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1/28/15 2:16 P

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Late night, so late arising today. With all the sleeping Bob is doing, I'm ready to do everything I can through the night and sleep during the day. Up at 12:30 last night because Bob decided he wanted Dinner, at Dinner he was not hungry, so I ate by myself. Needless to say I got back into bed and asleep by 2:30. Today I'm tired, nothing is going right, and I'm angry. Guess with this change in his behavior I'll be angry for months to come.

Stay Safe!

Michele - Northern Kentucky


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1/28/15 1:50 P

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emoticon Sounds like that move put you right into a Pandora's Box. Hope things are beginning to level off for you. Florida can be a heck of a respite from where you moved from.
Sorry to hear about your Dad passing. Hope your daughter is doing OK and returns home soon.

Happy your back, don't be a stranger! Michele

Michele - Northern Kentucky


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1/28/15 12:02 P

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Hi All...

The last 6 months have been some of the hardest months of my life. We left PA on August 8th and got to our new home in FL on August 10th. It was a zoo here, with friends and family moving me. Too many chiefs. Tons of boxes everywhere. CRAZY!!

Two weeks after we arrived, I fell in the parking lot of a convenience store and dislocated my left shoulder (that's my good one). A week later, my Dad, who turned 91 four days after we arrived, passed away. Then, my daughter started getting ill. I won't go into all of the details, but will say she's been in the hospital almost continuously since October. She's in rehab now and will be coming home as soon as she's strong enough to stand and pivot without help.

I've gained weight (nearly 25lbs.) because I've been eating anything that's around. I quit smoking the first of the year, and that's had an impact on my eating. But, I'm ready to get back on track and back to a healthy lifestyle. It's good to be back.

ReRe

They call me ReRe.....

The only way you fail.....
Is if you quit!

Life is too short not to be happy and have a good time!!



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1/25/15 9:04 P

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Laura, you hit that last paragraph on the nose. Men seem to never out grow the idea that women are only here for their needs. As hostess, cook, housekeeper and what every they need. Well he's thinking is not the way I was taught growing up. My Dad made it a point to instill in me that I was a person, that a relationship was not 75/25 but 50/50. Only now in the last 3 years, hRobert has been striving for the 75/25 and poorly at that.

The more you gather info on Centre Crest, the least of a problem you will have later.
Stay strong! Michele

Michele - Northern Kentucky


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1/25/15 7:42 P

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Hello, Michele...when I went around to Centre Crest earlier, they said there's no waiting list. I want to go over again and see what I have to do to get this thing happening. I'm really burning out and depressed.

And yes, we do forget about ourselves. I have no idea how girls are raised nowadays, but my mother (and teachers and counselors and everybody) told me that I was here to serve, that I was not supposed to think of myself, that the worst thing a girl could be is "selfish". I was put here to give and not receive. Only bad girls wanted something for themselves.

Intellectually I know better, but deep inside I hear those nagging voices telling me how bad I am for wanting something for myself.

And it's clear to me that Allan learned that men and boys are Entitled, while women and girls are obliged. He's not the only one. Lots of men think that way, and lots of women struggle with this. He's affectionate and loving, but his sense of entitlement and my sense of obligation are really toxic.

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1/25/15 2:39 P

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Do you even have Allan on a waiting list for Centre Crest? That length of time is what you need to know. If he is on their waiting list, that is to your advantage.
If he continues his picking and perhaps get those legs infected enough to warrant unexpected surgery, what is next. I realize that deep down you don't want Allan to go anywhere ( none of us do). We so have a tendency to forget about ourselves until its to late. Once we realize we can not change behavior, we need to think about ourselves. That's the hard one for us all.

Stay strong and remember yourself (which I knew you are doing). Michele

Michele - Northern Kentucky


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1/25/15 7:51 A

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Unfortunately if Allan wants to pick and scratch, he'll pick and scratch. I've taken sharp things away, but he just finds some other tool or thing. He mumbled that it was the cat who was giving him some sort of animal disease but I refused to accept it. We've been through this before when he blamed his sores on cat diseases, and I took the cats to the vet and had them examined for anything that could be transmitted to a person. And the cats came up clean. Which I already knew. I knew how Allan functions, and that he was in severe denial about what he does.

I only manged to break through the denial then because I had the vet's diagnosis that there was nothing wrong with the cats.

When you suggest to call the Squad, do you mean 911? I don't think they would take him to the Emergency Room. It's not an emergency, he isn't damaged enough. And the hospital isn't very good about telling the doctor that his patient is there.

They used to call the doctor. That made things difficult because the doctor would have to go over to the hospital. If Allan had an appointment that day and we were lucky, the doctor's office would call and tell me that Allan's appointment was cancelled because the doctor had to go over to the hospital. If we weren't lucky I'd bring Allan to his appointment, only to be told that the doctor wasn't there and the appointment was cancelled.

This happened a lot. We once got bumped five times in a row. The appointment got cancelled, we made another one, it got cancelled, made another....

Now they have hospitalists. Go to the ER, go into the hospital, the hospitalist does all the doctoring. What's good? It means we don't keep having doctor appointments suddenly cancelled. What's bad? Our doctor often doesn't know what's going on. And the hospitalist doesn't know us, and we have to always start from the beginning.

Wednesday is my day. I intend to talk with the doctor and do what I can to get this nursing home job done.

Allan can say No, of course. But I want to say No, too. No, I cannot take care of him. His needs are too much for one amateur person. He needs professional nurses and various doctors.

I'd rather not have to blindside him by taking him to the ER, and then telling him he can't come home. When he was in the hospital he kept talking about how much he missed the cat, and how he was looking forward to being home with her. If I secretly arrange for him to not be allowed to come home but sent to Centre Crest instead, it will be a disaster. He must not be blindsided.

He must be persuaded, and since the day he fell, he's been more open and cautiously willing to not fight the doctor and me about it.

How normal my situation is to me! I'm so used to a man who is like a not very bright five year old. I'm so used to the incompetence, the inability to have an adult conversation. I'm so used to the dysfunction. How odd it would be to be around a man who is a capable adult. I don't know what that is any more.

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1/24/15 11:22 P

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One I would lock those knifes somehow or the next time you find him bloody and dressings off - Call the Squad. You'll have the paper work to help with Nursing Home placement and his doctor will be called from the ER. The Doctor and Hospital could have started that move when he was in the Hospital.His admission to the Hospital should have been reason enough. However, Allan can still say NO.

Stay strong, you have one huge predicament. Michele

Michele - Northern Kentucky


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1/24/15 10:38 P

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What shall I do with this man??? Pick pick pick! He picks himself bloody. I can't stop him! This isn't new, it's old, old, old.

Years ago I took him to a hospital clinic in PIttsburgh, some three hours at least from here. They asked him if he picked, and he vigorously denied it. But I made faces at the doctors and made scratching motions. They caught on and bandaged him up so much that he couldn't pick and dig and scratch. And they told us to come back a week later. Surprise! These bloody wounds that he blamed on "contagious diseases from the cats" (and I had taken the cats to the vet to see if there was some contagious thing they were giving him, and the cats were innocent, no interspecies contamination going on) were gone. Eventually he had to agree that it wasn't the cats.

It was compulsive picking. But he denies it, even though I see him at it. And I found a pocket knife with blood on the blade, and I knew he was scraping at himself again.

Earlier he had this Delusional Parasitosis, and Michele, you may have had patients who insisted that they had bugs in their blood, coming up to their skin, Allan had earlier insisted that he had these bugs in his blood.

Another long drive to Pittsburgh. Another day totally spent in getting Allan to the doctor. But after a week with heavy bandaging, he couldn't pick. And guess what? The open wounds were healing up.

Now he's at it again. I did tell the head nurse at the Wound Clinic about the compulsive picking.

Once again he has a pocket knife. I found the knife open with bloodstains on it. This is old behavior. He'll scrape and scratch at a wound with a knife.

I'm going to make the knives go away. Disappear. But so what? He'll just come down to the kitchen and find a kitchen knife.

I've had enough! I can't stop him from mutilating himself! Enough! I see the doctor privately on Wednesday, and I take him to the doctor for his own appointment on Tuesday. When I get to see the doctor by myself I am going to ask what I have to do to get this nursing home thing happening.

I can't take proper care if this man! I can't manage his health or sanity! He won't stop picking and mutilating himself. This is not new. It's old, old old!

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1/23/15 12:14 P

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Sleep patterns with me change every night. Last night he was up at 12:30 and to the bathroom. Once back on his throne he stayed up till 1:00 tmen to sleep. Then I laid an tossed for awhile before I feel asleep and I was up this morning at seven. So far he fixed his own cereal but requested a sandwich to be made, so now he's back to sleep. So at present I'm 4 hours behind on what I was to accomplish for today. Another late night for me!


Laura...since Allan is a picker. Have you tried clipping his nails as close as you can? But, you would still have to which their length and trim them often. Just a suggestion. I really can't think of anything that would appear less permanent for this problem. The Peddie nurses use gloves or mittens with the kids. Yet I heard that those too are reapplied often during the shift. What does the wound clinic say about this?

Irene, glad to hear you have an avenue for assistance with M. Can find nothing similar in the Cincinnati area or even in Northern Kentucky. If what they offered and M goes and likes, you have a fantastic option.

Got to get going! Have a peaceful and safe day, Michele





Michele - Northern Kentucky


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1/23/15 8:46 A

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Still no Centre Crest. They sent him home. I am going to see the Patients' Relations/Customer Service and report the seriously sloppy and negligent care Allan got this time at the hospital.

I did tell one of the nurses that Allan is a Compulsive Picker and that he's in Denial about it. They wrapped his arms with gauze but that didn't stop him from messing up his upper arm.

After I got him home it was the same old stuff. Blood spots on his shirt. When I do his laundry I use stain lifter to get the blood out. He scratches his back with the head of his cane, which has sharp edges. He just won't quit.

It sure sounds as if Robert's sleeping is being disrupted. That sure is rough on you! Or are you able to leave him alone when you need to sleep? Having to watch someone all the time is horribly difficult. My grandmother was like that, had to be watched constantly.

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1/23/15 8:35 A

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Well Irene! I'm glad to hear the good news that you will be able to get some help! It's just too much to do alone. The "day respite sessions", is this Adult Day Care? I've heard tell that while some people grumble and fuss at first, eventually they come to like the Day Care because there are stimulating things to do, and things that make them feel better.

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1/23/15 8:32 A

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Well! That was a bust!

Ooooh, I got up and didn't have any breakfast. I fasted, and then headed out to the doctor building in the next town over to have my fasting blood test.

Whaddya think? The doctor forgot to put the order in. All that hustling for nothing. I'll have to fast all over again and try again on Monday. I'll call the blood test place later today and see if they were able to get an order.

What a nuisance! And it's grey and cold again today.

I came downstairs and found a container of food on the floor. I opened the refrigerator to put it back, and found the milk bottle open and the cap on the shelf beside the bottle. And one of the cabinet doors was standing open. Looks like that forgetful man was at it again.

Whatcha gonna do...?
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1/23/15 1:57 A

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Popping in to tell you a support worker from A .charity , came to see us yesterday. Such a nice man and so much info to take in, lots of things that can help. First I can claim 25 per cent off town taxes . That will help, he's sending me the firm to claim that. Also talked to M and made him want to try the day respite sessions . I have already asked for details of where and when,
He's givrn M an I.d card to fill in, saying he has A with memory loss, his name and contact details on, I am to have a carers .i.d too .i have details too of approved sitting service, yes I have to pay but sometimes it's worth it,
I feel someone is helping me to cope now.
Look after yourselves . Irene

Edited by: STITCHINGNAN at: 1/26/2015 (02:09)
Irene in Nottinghamshire UK
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1/22/15 11:00 P

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Yep, seen that more times then you can count on two hands and two feet. What used usually took them 24 hours to figure things out and we were back to square one. If wounds were on a hand or leg, I've seen casts put on ( type of cast or a brace type ) and sooner than later it was off. Years ago arms would be restrained, that worked only till the patient figure how to get them off or how the could get the area up to the hand. I'm not sure the procedure has been figured out completely as of yet. I thought you would post that Allan was transferred from the hospital to Centre Crest..... Did you mention that to the Social Service worker?

Robert started on his new chemo meds yesterday and boy!!!!! I'm about to flip my lid tonight.
He walked into the Center yesterday and left vis wheelchair to the car. At least the nurses and patients there witnessed his problems. Once home he sleep from noon to 8 that night.
He finally got to sleep again about 3 this morning and again slept from i this afternoon till 7 tonight. He has asked " what day is the" close to 15 times today. If have check all the side effects, as yet I have not found what he is doing on that list. So, I need to check the list received with a list from a few web sites. What I received from the center was provided by the Drug company.

I need to get a Budget started for this year!!!!! Once I get one going one of our drug co-pays suddenly has gone up.Both Brand and Generic plus Specialist co-pays.

I'm exhausted, mad with his family with their excuses as to why they do not visit or help with his care.... just want to have no contact with them what so ever. Need a support group locally here that is not 25 miles away. Just need, need and more needs.
Hear my pillow calling...........so night to all. Michele

Michele - Northern Kentucky


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1/22/15 9:03 P

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Hello,hello...yes, a busy week, and more busy-ness heading my way.

Grey and cold and snow, and I have to take my car in for servicing tomorrow, and I need to get a blood test (something for me?? how can that be??), and I need to check Allan and put bandages on his many wounds. He's a Compulsive Picker and won't leave himself alone. Michele, I'll bet you saw that sort of thing when you were nursing and had to deal with patients with lots and lots of nasty open sores. I've whispered to nurses that he's a Compulsive Picker, and that's why he has all those little open wounds.

Oh, and he's home from the hospital. Same ol' stuff, and same dementia that the doctor didn't really see. That's how dementia can work. The patient can perk up and rally at the doctor's office and look pretty normal, but then fall apart at home. The doctor doesn't get it.

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1/22/15 8:43 P

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Seems everyone has their hands full this week
Strong and keep in touch and Bless Us All!


Michele - Northern Kentucky


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1/21/15 10:07 P

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Hump Day ..... the start down hill for this week. If we all could only get a few breaks a week, it would be the start of something Grand. Tired tonight or should I say exhausted. All morning at Cancer Treatment Center with Bob and errands run once home. Today my day started at 5 a.m. and I'm sitting here with tearing eyes, ache muscles and joints and craving a Chocolate Sunday with whipped cream and a cherry on top. Tonight, it will be just a craving.

Hope all, had an uneventful day, yet have a better day on the morrow! Michele

Michele - Northern Kentucky


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1/18/15 9:51 P

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Another week ahead, another week to look for that Silver Lining. Hope next week is a much better week than the last! Michele

Michele - Northern Kentucky


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1/17/15 9:34 P

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Getting to your post, Irene, from two days ago. Allan likewise has swollen legs and feet and gets breathless.

In Allan's case it's heart failure and edema. I have to be really strict with his sodium.

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1/17/15 12:29 A

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I am doing a lot of thinking and planning , I decided to take a
Sparks break for now, I am ok just tired and have to work things out as M needs more care and attention, I will look at my personal mail as I can and be back with you later, look after yiurselves , Irene

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1/17/15 12:16 A

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It's easy to see that Life isn't getting any simpler for us, or our Love Ones. Just once I would love to get more than 3 hours of sleep and not stressed out.

Have a better day tomorrow.

Michele - Northern Kentucky


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1/16/15 9:30 P

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I think Allan misunderstood something with this amputation business. The nurses knew nothing about it, and I haven't been able to ask the doctor.

But someone is asleep at the switch! There was salt on his dinner tray, not sodium substitute. I asked the nurse, and she said that only carbs were being monitored, not sodium.

Hey! That's why he's in the hospital! Complications of edema and heart failure! He is supposed to be on a low sodium diet! He's always been on a low sodium diet before. What's happening now?

The nurse couldn't do anything. Neither could the woman from the kitchen. It has to be the doctor, but the doctor wasn't there. I asked the nurses to please tell the doctor.

Tomorrow I'll go and visit and see if anything has changed.

Now I'm tired. Good night.
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1/16/15 3:28 P

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A lot of thinking going on today. The situations swing from ome thing to another.
Thurday I had good news of an extra allowance.
Friday at the doctors , we get told M has heart failure ! His heart is struggling to cope.
His lungs get congested and his legs are swollen. He is on extra water pills to move more water from his body, he's to stay home and keep warm . Now on a round of blood tests and ecg to come . Then when all results are in we get a new prognosis , I am still taking in it, it seems to have gone in and right out again with him. Irene

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1/16/15 9:05 A

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Too much to think about first thing in the morning! I slept late, and when I woke up I had a luxurious feeling, I didn't have to hustle and deal with medicine and food and another person's neediness. A mini-vacation for me when Allan is in the hospital.

I called him and said Good Morning, and that I Love You, and the usual morning sweetnesses. I said I'll be coming out to the hospital in a while, right now I'm starting to have my coffee.

The usual things.

And then Allan said, "They're talking about amputating my leg."

Whoof! Ooof! I haven't even gotten halfway into my cup of coffee yet, and SPLAT! This piece of news dumped on me first thing in the morning.

I want to talk with the doctor and not rely on Allan to explain things to me.

I don't know that I will be surprised if this news is relatively accurate. I already told you about this nice new young doctor who examined Allan and said that Allan's leg and health are so bad that although there are all sorts of neat things he can do, he can't do them for Allan.

And if amputation really does happen, that means that Allan will absolutely have to go to Centre Crest. They can't just lop of his leg and dump him back on my doorstep.

Okay. I've finished my coffee. I don't know that I want to sit here in leisurely fashion, have a second cup of coffee and read for a while. I want to get moving. One of my two book clubs is today and I value that. I am going to still have my book club. Umm, unless the doctor is supposed to come in at book club time....I had plans yesterday, and the doctor came in just as I was about to leave, and I was late.

I just want to have an idea of what's going on. If it's not amputation and Allan is getting things all mixed up, well, okay. And if there is amputation talk, well, does the doctor mean right now, or later if other measures don't help? I just want to know what degree of bad news it is, and not be guessing.

Onward and downward, as Susan used to say.

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1/15/15 10:58 P

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What I was preambling towards is that we saw the primary doc, and Allan's infection took priority. I did manage to shoehorn in the information that Allan took that bad fall and is realizing that it is Nursing Home time. But we didn't get a chance to really talk about Centre Crest. Still I did get a chance to tell the doctor that Centre Crest is now a real option, and the doctor said he'd tell the social worker. And then I hustled Allan over to the hospital to deal with the infection.

When I got home I e-mailed my daughter to tell her what was going on. She phoned me to ask if we were going to get Allan in the nursing home now.

I don't know! Too much confusion and too much to do. I do know my daughter loves me and is concerned about the intense stress I'm under, and wants Allan safely in Centre Crest. I know she wants to help and wants me to be healthy and happy. But sometimes she pushes me when it's not time to push. I had no answer. I had to get Allan to the hospital, make phone calls to cancel the appointments, and reschedule the Wound Clinic appointment. I'll call the dentist on Monday and reschedule.

My daughter is sometimes so much like my mother. They say it skips a generation. My mother was a Champion Nagger, and my daughter can nag me, too. Please don't nag! I'm hurrying as fast as I can!

Back in the late '80's or early '90's there was a "Cathy" cartoon that addressed this very thing. Middle-aged women were talking about being horribly nagged and scolded, and in the last panel one of the women was saying, "It's not our mothers, it's our daughters," and I knew exactly what the cartoon was about. And around the same time there was an article in the Ithaca Journal about a man who was an old hippie, a man around my age, and how different his son was from him, and how his son was more like his parents, more like an older generation. I could identify.

My daughter is so much like her Grammy. She's like Grammy because she was so close to Grammy. Even though I hear that same nagging and grit my teeth, I'm so glad that she had that wonderful relationship with Grammy. She's the first grandchild, but Grammy got breast cancer. My sister's children never got to have the relationship with Grammy that Meri did. And besides, we lived right around the corner from Grammy. My sister was first on Long Island, then in California, and then in Ithaca NY

And Grampa. Meri is the only grandchild who knew Grampa. He died at age 54. He had lung cancer, and mercifully died of complications from an operation and was spared the horror show of death by terminal lung cancer. (A few months ago I told you about our dear friend Jerry who had heavy-duty lung cancer and died mercifully of a heart attack in the middle of the night, and was likewise spared hideous suffering.) My sister's kids never met their Grampa.

Okay, okay! My daughter nags at me and tries to hurry me along. I'm going as fast as I can! I hope she never has to go through this with her husband. (We love Pete to pieces and hope nothing bad ever happens to him.) I hope she never has to make tough decisions and has to wait for other people to catch up, and for conditions and circumstances to be right, and for agencies and social workers and government funding to do their job. I hope she never has to tiptoe carefully and time things right to persuade a recalcitrant and difficult man to cooperate.

Now the day is over! I want to go to bed! Allan is safe in the hospital! Goodnight!
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1/15/15 10:23 P

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Laura ....... If your're still thinking of Centre Crest, Homes do put admissions from an acute hospitals as a priority over those not presently in the hospital. Talk to his primary about this.
If his legs are infected once again, can you really handle him at home. Just a suggsuggestion.
Michele

Michele - Northern Kentucky


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1/15/15 10:09 P

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Same ol' same ol'...so what's new? Nyaaah! The more it changes, the more it stays the same. Allan is in the hospital once again. Once again he has infection in his legs, and once again he'll spend the next couple/few days on intravenous antibiotics. And then they will send him home. Same ol' same ol'.

We went to the doctor today. This was supposed to be Triple Doctor Day. First Allan to the primary doctor. Then me to physical therapy (well, that's not a doctor, nor Allan's, but it was still three medical appointments in one day), and then I'd take Allan to the Dentist, who is a mouth doctor and therefore a doctor who makes doctor appointments.

The primary doc looked at Allan's legs and sent him to the Emergency Room. I had to make the phone calls to cancel the other two appointments. And when they said they were going to admit Allan, I had to call and cancel Allan's Wound Clinic appointment tomorrow.

We go to the doctor! That's what we do! We go to the doctor. Going to the doctor is our primary occupation.

I want to go to bed now. Tomorrow I will hustle out to the hospital because they don't have one of the medicines Allan takes, and I am to bring it to him.

I'm tired now. Enough for one day.

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1/15/15 11:20 A

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Hope tomorrow's medical goes well for M. Does sound like there is a problem, If it is ... hope it's one you can handle with M's help.

Bob wanted to do the Laundry today, so I helped him get all he needed to the Laundry Room. However, turned around and he was gone. Called for him and he answered that he was in the Bathroom. I new then I had just got suckered into doing the Laundry. So I got things going and laughed until all laundry was in and started. Now I'm listening to " are the washers still going?"

Seems today is going to be my day and another day for him to sleep. Stay safe and smile alot... Michele emoticon

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1/15/15 9:18 A

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It has been an up and down week so far, Alzheimers is a strange animal. M always has been stubborn , now even more so, he will do as he wants or die in the attempt. I can't make him do things or not do them.
He has a physical medical tomorrow. I can't put everything down to A. Surely that wouldn't make him breathless when he walks ? Or have swollen legs and feet? Who knows. I learn as I go along .
One bit of good news is I heard today I am entitled to Attendance Allowance. A weekly sum paid by social services for me services as a full time carer. It's a lot less than they would have to pay if I got him on a home, but it will help and will pay for professional carers if I need them. I am ok now but who knows what the future holds. I got back pay too from my claim in October, it will help, caring is enough to cope with without financial worries too. I will let you know how medical goes tomorrow , Irene

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1/14/15 9:21 P

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Laura take advantage of that sun coming your way and with somewhat warmer temps. Take a walk, sit in the part and think. Even if Allan goes to Centre Crest will you continue to wait on him and do as he wants? Can you take advantage of not having his to dos and "My way or the Highway". That time should be yours to get yourself back together. .......... Listen to me the blind giving advise when I'm still not taking advantage of the time Bob does and can do for himself. Is it commitment on our part?

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1/14/15 9:02 P

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My situation is perhaps different. While I am with Allan for the duration, I don't know that I'm doing him a favor by keeping him at home.

If I keep him at home simply because he wants me to I don't do either of us a favor. I'm watching his health deteriorate under my care. He needs real nurses, and more than just one, not a tired play nurse and make-believe doctor who is burning out and depressed. He needs professionals who know what to do and can do it. I'm trying to do the job of a whole team of professionals, and I'm only one amateur.

Does he have the right to demand that I ruin my own health? This is something I haven't said out loud because I know Allan, and I know he'd not be able to handle this idea. But by expecting me to be his sole caregiver, he's also asking that I stress myself into bad health and a shorter and more miserable life (and maybe die of a stroke or heart attack, leaving him alive with no caregiver).

Do I owe him this? Am I expendable? Are women worth nothing, that we are supposed to work till we drop dead to please a man?

Even if it would shorten his life, he'd rather stay home. Yes, he did agree to go to Centre Crest, but now he's forgotten much of what he said. But my health is being compromised by this caregiving. And Allan does not understand this.

This is not due to his dementia. Allan has always been unable to comprehend other people's rights, other people's needs. He has never understood the impact he has on other people when he expects them to do things for him that damage them. He has never been good at negotiating and compromising. My Way or the Highway.

I don't want to have to submit to letting him drag me down with him. I don't know that putting him in Centre Crest where he will get much better health care is the wrong thing to do. I won't be abandoning him. I'll be there for him every day.

Don't mind me, I'm tired, and it's been just too cold and dreary.

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1/14/15 6:23 P

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Set down last night and figured out what my pay over the last threes years would have been using my pay rate from my last job. Basted it on 12 hours. 7 days a week for 50 weeks. I could pay a car out-right for cash. That didn't make me happy at all.

However, it is what it is. For me a commitment. " I'm here for the duration." Decided to go back to my night shift hours. Up with house work from 4 till about 10 then run errands and have me some "Me Time" then off to bed. Now, just have to see how that turns out. Know from experience that Bob does alot on his own during the night and now is sleeping all day.
I can play games as well. ..... Michele

Edited by: MICHELE142 at: 1/14/2015 (18:24)
Michele - Northern Kentucky


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1/14/15 4:21 P

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Am I ever grouchy and grumpy today! And I suspect you both will understand.

I/we care care care and give give give and hustle around doing doing doing. But our loved ones just get worse and worse. Allan doesn't get better. We try and try, but they don't get better.

I'm cold and frustrated and burned out. I can never do enough.

Warmer temperatures and sunshine, please. But it isn't time yet. It's still winter. Tomorrow is Triple Doctor Day. I'll be running and running all day.

What a crabby and foul-tempered old lady I am today!
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1/13/15 9:20 P

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I totally manage Allan's pills. I have them in those days-of-the-week boxes, and I keep the boxes. I wouldn't think of having Allan try to manage the pills. "What day is today?" it would be, and he'd forget what day it is and take too many pills from too many days.

I come in with his pills and his milk (to prevent stomach discomfort from the potassium supplements he needs) and give him his inhaled medicine and then his pills. I have to do it this way. There's no way this man can remember what he should and should not take.

Oh boy, we see the doctor on Thursday, and we're going to start to talk about Centre Crest. I will tell the doctor about that bad fall and that we've decided it's time. And we can at least start to talk about the pain medication issue and make it clear to the doctor that the pain must be managed properly. Bit by bit things are slowly starting to move in what I hope is the right direction.

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1/12/15 1:23 P

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I'm noticing developing problems with Bob's pill taking within the last three weeks. Previously it was an infrequent happening, now more so. I can fill his pill box for the week on Monday and by Thursday or Friday he says it's empty. Also I can go to fill his box for the week and find numerous days that have not been taken. Bob seems to have a theory that if he feels fine he doesn't need them or if he feels bad, if one works two or more does him better. So guess its time to start playing "Sarg" with him.

Temps are moving once again toward freezing, light rain and ice are visible. Got errands run yesterday before all this started. The news this noon had rain an ice in the forecast till Wednesday. Guess it will be Spring before I begin to thaw out from this Winter, then that depends just how far off Spring will be.

Have a great week and Be Safe!

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1/12/15 3:47 A

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Hello on Monday I think the cold weather has a lot to do with how we are feeling, seems no end to our problems at times. Yes we are getting older too and we can feel our own health declining too. No real answers from me! Just saying how it is ,
M had been pretty good on looking after his own needs but iam needed now to help more, i put his pills in a dispenser box and open the lid at the right time like morning pills, I just checked and Sunday nights pills had not been taken , it is now Monday morning.
Really I should have kept quiet as he immediately took them with his morning pills saying that's ok. now. I just hope that is ok and no bad reaction on the pill mixture, I shall have to take over that job now, but I do try to give him some independence which he needs, I feel a bad day looming! Irene

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1/11/15 9:55 P

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Blizzard perhaps. Frankly I vote for Spring emoticon .

Michele - Northern Kentucky


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1/11/15 9:48 P

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The weather forecast is for icky weather tomorrow. Sleet and freezing rain and all that crummy stuff, right when I have to get Allan to the Wound Clinic, and then take me myself to the orthopedic doc to follow up about my tendonitis, and then on to physical therapy. I can't say I'm thrilled...ugh, what next?

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1/11/15 9:38 P

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Don't know what PA has for weather right now but, NKY has freezing rain straight through till Monday, late afternoon. I can hear the salt trucks outside doing their job. Thankfully I should not have to go out till Thursday. Bob's Chemo has stopped for this week and last as he has become immune to the drugs he was getting. So on the 21st of this month they will be starting two new drugs that they hope will work better. Beginning to wonder if any drug will work as Bob is not willing to help the Docs to help him.

So I continue my Catch 22! ........ Michele



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1/10/15 9:40 P

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This horrible cold weather is driving me nuts. But then I scold myself and tell myself to remember back this time in 1963, when we (first husband) arrived in northern Maine at Loring Air Force Base (not quite the northernmost part of Maine, but almost) with temperatures 20 below (minus 28 or 29 Celsius) and snow, so much snow, that was a very snowy year and the snow almost totally covered the downstairs window. I still have snapshots somewhere in this house of corridors of snow, higher than we stood.

And I lived with that, with a tiny new baby, just born in November of 1962 (a wonderful middle-aged woman now, best daughter anybody could ask for). I put on my coat and went out and shoveled snow while the baby slept, shoveled the snow and threw it high, high, those corridors of snow must have been a good eight or nine feet high or more. Maine is north, north, north. But not as north as Canada or Alaska. But still plenty cold and north.

So we lived there, and then we came back on leave to visit home in Pennsylvania - and I was actually colder in Pennsylvania than in Maine. The cold in Maine was dry, really dry, and we'd put on warm coats. But the cold in Pennsylvania, 32 or 33 Fahrenheit, 0 to 1 Celsius, and it was humid! That damp cold was much harder to bear than that very dry cold farther in the north. That dampness really penetrates and chills. Dry cold is another matter.

I feel cold inside. I'm complaining and grumbling. But then I go outside and I'm okay. Then I get in the car and I'm complaining again. Then I get out and I remember being in Maine, and that I did pretty well. Hey! Stop grumbling! Remember that I lived in Northern Maine, almost but not quite the northernmost spot in the US! I can deal with really cold weather.

I'm depressed with caregiving, that's what's happening. Allan needs so much, the denial is breaking down, I have a very sick man here. As I've said before, I think, I always thought of nursing homes as where you put the old person when Alzheimer's has advanced so far that you can't deal any more, like my grandmother. Because of my grandmother I always thought of nursing homes as dementia homes.

But no. That's only one thing they do.

I have to keep repeating, have to keep telling myself over and over.

And because I live with Allan and cope with him day after day, I can't quite see just how sick this man is. He deteriorates, but I don't quite see, since I'm here and it's so normal, it's what we live with, and it's normal. Every little loss is normal. He does less and less, and somehow it's normal.

It's so easy to not look. But when I do look and compare Allan with normal people I am shocked and horrified. This is a sick man and we're in a sick house, and I'm so used to a sick person, I don't realize how far from health and normality we've fallen!

And then I look at Me, and I see just how far I've fallen down. I'm on the way out. I'm in bad shape, in severe depression, and struggling to maintain my own health, which could go to bits if I didn't struggle. As I've just pointed out, since Allan's dementia is still in the earlier stages I tend to forget physical health, and Allan's is totally horrible.

He's turned into his mother. No, he isn't blind, and he's not on dialysis, he still has his kidneys, but in other ways he's an invalid like his mother. Wake up and smell the coffee! This is a sick man here! He needs to go to Centre Crest as soon as possible.

It's the pain management that could be the problem. I don't want to borrow trouble, but at the same time I don't want to just assume that everything will be all right and then find it's not all right, and Allan can't get in and there I am, still trying to take care of someone who needs far more than I can give. I don't know what to do or how long I can live like this. I don't want to borrow trouble, but I need to really discuss all this with the doctor and take care of business.

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1/9/15 12:04 P

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You should be feeling good as well once Allan gets to Centre Crest. I hope that will not be a long wait to accomplish. Once that Sun starts being out each day we all will be feeling better. I know I will. Now all I need is to have this weather really warm up. I'm tired of being cold and having enough clothes on just to go out. Makes it hard to be comfortable driving let alone walking. Yet it's Winter but it does seem that our Winter's are getting colder and longer. It seems at times that we are colder than Alaska. This has been two Winters in a row of extreme cold here in the lower States. Do wish 2015-1016 will be warmer.

Seems that in the end we all have to do what is the best for two people. It may feel as an easy decision but it is not and never will be. Only God knows the reason and that reason is ours to find and follow through with. Michele



Edited by: MICHELE142 at: 1/9/2015 (12:06)
Michele - Northern Kentucky


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1/9/15 2:05 A

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Hi on Friday. Of course Alan needs more care than you or any one person can give ,It is acceptance time , it may cone to us all. M is ok so far at home , he is having a restless morning , her can not settle to anything. My day goes by what he is doing.
I had an eye test yesterday new spectacles needed and there is a cataract forming on my right eye, not ready for removal yet.
Have a calm weekend . Irene

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1/8/15 10:41 P

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We've already done the help at home thing, and it didn't work. It would be best for Allan to be in Centre Crest. He needs more care than he can get from a burned out amateur and once in a while nurses stopping by. He needs multiple things that have to be done in one place, rather than professionals coming in from time to time and expecting me to keep things going between visits.

Today was a better day. The depression was not as bad as yesterday. And tomorrow is book club, which is good.

And another good thing, well, good and bad. We saw a new doctor at the Wound Clinic today. The good part is that we were both very impressed with this doctor.

He has a good bedside manner, and while a good bedside manner does not trump real medical capability, we'd rather have a doctor who knows how to interact and work with patients than one who doesn't.

And the really good thing is that this likeable young doctor really really took the time and effort to READ Allan's chart and medical history. Too often we go to a new doctor, and he/she doesn't have a clue why Allan is there or what he needs. But this energetic and bright young cardiovascular guy came into the room already knowing about Allan's medical history and his big fat clot in his aorta and his multiple clotting factor problems and venous insufficiency and all the problems that have been going on all along. He'd done the homework and knew what was going on with his new patient. And he's a team with Allan's (and my) cardiologist who is another really good doctor. I felt really good about this doctor.

The bad news is that there's nothing this hot-shot doctor can do. All this medical ability, all this skill at dealing with those nasty problematic veins in Allan's legs, so many alternatives, so many things this really capable and competent young doctor can do, but it's Allan!! It's Allan!! He's too stinkin' sick! Too many things are wrong with him. It is not certain that he could survive the operation, and even if he did, things would fall apart and fail.

So what's left is palliative care. Relieve pain, and keep on keeping on, patching things up.

And walking, and physical therapy, which he can get at Centre Crest, and attention to the diabetes, and cognitive therapy, and wound care, and a dietician providing the right nutrition and all the things I am struggling to do and failing.

It's clear to me that I am an amateur play nurse and make-believe doctor trying to take care of a person who needs far more than I can provide. Allan will feel better and do better if he can get genuine professional care.

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1/8/15 3:24 P

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Are you sure you can not get some type of help for you both at home. My girls keep pushing it for me but I'm just not sure what they are coming up with?

As with always time will tell!

Edited by: MICHELE142 at: 1/8/2015 (15:24)
Michele - Northern Kentucky


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1/8/15 8:04 A

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Yesterday was a severe depression day. The fact that it is so horribly cold made things worse. But I know from experience that depression fluctuates. Even though it is even colder today, perhaps the depression won't be so intolerable today.

It didn't help that Allan was having a bit of a dementia day. He microwaved a sandwich steak on a lunch plate instead of a microwave plate - and then lost it. I came into the kitchen and found him with a sandwich bun slathered with mayonnaise, and looking around trying to find the meat. All confused. Nowhere to be seen. Not in the microwave. Not in the toaster oven. Not in the convection oven.

I found it in the freezer. He'd cooked the steak and then gone and stuck it in the freezer. Don't ask me why, and don't ask him why. He doesn't know.

His walking is deteriorating. And I can't stop him from just standing and standing, which is when he has those awful falls.

But once again the good news is that he has become willing to go to Centre Crest.

I still have to solve the doctor problem. No, he can't continue to have his regular doctor. He has to have one of the Nursing Home doctors. I must confer with our doctor and with Centre Crest and be sure that Allan will be able to get the pain control he needs. Pain management has *always* been an issue, and the doctor we have now has been so good, finally, as I've said already, we've been able to make things work.

Inability to deal with pain management would be the deal-breaker that keeps Allan at home, and me stressed through the roof.

I don't know how much longer I can go on trying to take care of a really sick man. He needs a team of professionals, not one lone burned out, depressed, handicapped, stressed amateur caregiver who cannot meet all his needs.

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1/7/15 11:21 P

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Got the results of Bob's Scan today and it was not very promising. He has 2 weeks of from Chemo and on the 21st will start Chemo was again with 2 different drugs. Right now he is bundled up in his recliner napping. Hope though he turns that nap into a good sleep tonight.

But tonight to bed and have a better day tomorrow. Michele

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1/6/15 10:03 P

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Irene....Today with Bob has been a day of I'm sorry and thanks for not being mad yesterday!
It's hard for me to remember just when things happen. So we spent the day talking about whatever he wanted to. Tonight, seems it never happened.

The Big A is getting blamed for a lot that doctors just don't want to handle just as if they can not figure out a pain or ache, its the Flu! That seems to be the reason some doctors do not patients or family to know more than they do!

Have a great week....Stay Warm and Safe TRavels. ........Michele

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1/6/15 9:16 P

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Check with his primary and he if he will see Allan there and check with the facility to see if that is possible. those facilities have Hippa as well. That is Federal not State imposed/

I don't envy you at all. Good Luck, hope they do not have a long waiting list!

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1/6/15 8:23 P

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We went to the cardiologist today, and the subject of the nursing home came up. Now it's out in the open. Which means now it's time for me to get busy and see what is involved in actually getting the job done. I need to go back to Centre Crest and ask more questions. It will be the doctor who does much of the actual work.

And I will have to do some problem solving. Allan will be treated by the doctor at the Nursing Home, not the primary care doctor we have now. That does create a difficulty that we're going to have to figure out how to deal with. Allan does not want this new doctor. And I can sure understand why. I would prefer if he could still have the doctor he has now. There was a difficulty with that doctor back in 2002 - he didn't like to prescribe pain medication. (When our own doctor, the one we had then, left, we got stuck this other doctor.) Allan remembers that. So do I. I am going to have to make sure that Allan's pain will be managed in Centre Crest, and that some doctor won't leave him without adequate pain management because he doesn't like to deal with pain management.

Now I have lots of things to do to do my part in getting this thing underway.

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1/6/15 7:55 P

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Hello, Irene...there are articles on the Alzheimer's Reading Room about this. Here's one:

www.alzheimersreadingroom.com/2013/1
0/
dementia-patients-want-to-go-home-orR>-do.html


I hope this article will give you a good idea of a way to deal with it when Maurice wants to go home. Something that will quiet and satisfy him and not leave you stressed and drained.

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1/6/15 3:51 A

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Sad about Bob it's a cruel illness that changes personalities. Do you have any help or advice , I feel I can't cope alone any more. I am contacting medical services first to se if there's any physical reason for recent changes. It's so easy to blame Alzhemiers for everything,. Then if they can't find anything physically wrong I am contacting A society about a support worker visiting and having a good chat to see what else we can do.
Yesterday my husband was determined he was going back to his home town like NOW . I tried being patient and pointing just why it was not going to happen.
That didn't work so I looked up train times and told him he needed to get himself to the station in the City, i wanst going.
It was a long journey with two changes of train en route .
He would have to ask someone to tell him when it came the the change over station he can't see well enough to make out signs . It would be dark when he got there , so he had better go to a hotel for the night and look round the next day. Bearing in mind he hardly walks anywhere and can not see much.
NO I wasn't going too, should I pack him a bag? Bit cruel maybe but he thought it over and decided to leave it till better weather, He did say sorry later but it is all so draining of mental and physical strength . Have a calm day Irene

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1/5/15 11:11 P

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Here I'm having a problem with Bob's laps of memories from last year, to the point that he is lashing out at me. Then minutes later he is apologizing that he forgot and hopes his hasn't caused a problem. Then tonight he doesn't understand why he has no energy and demanding to know why. So after explaining why, he wants to know what he needs to do to change his problem. Now he's sleeping but he will be up around 3 for at least an hour. So trying now to finish up on what was left undone today.

Have a Safe Week! Michele

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1/5/15 3:03 A

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There's only three is us as regulars now and I am not in as much as I would like to be. There is so much news from Laura , so sorry about Helga, she will be missed . So sad she was kept alive beyond her wishes, I must admit I have not given much thought to what I would want at such a time
Sad too about Alan and his falls and ill health. But it has dawned ion him he needs more help, and care, so the procedure has started, I don't really know of financial side of Homes ,either here or USA ,
I don't have to look at them yet but maybe some help to keep Maurice at hour. Really he is no bother either sleeping , or watching tv . He is in stage 5 to 6 now of the ten stages of A. But can't realky be left alone.
I am ok just tired, I am awake 3 each night then so tired by day, I do have a doctors appointment but not till middle of January, I also have an eye test this week for me, I have a problem with my right eye. We plod on. My priority now is get some sleep then I can focus better. Take care . Irene

Edited by: STITCHINGNAN at: 1/5/2015 (03:11)
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1/4/15 9:06 P

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We had a kinda baddish day/very good day situation here.

The kinda baddish thing is that I came home and found Allan flat on his back on the floor next to his bedroom door. No, he wasn't dead (which I always fear when I come up and see him lying still and silent on the floor). I called out, "ALLAN!!", and he opened his eyes and came to. (How long was he lying there? He didn't know...)

Okay, so once again he fell down went boom. [sigh] So what's new?

His arm is bruised, but there were no real injuries this time, no broken bones, no sprains.

That's the baddish news. Allan fell down went boom once again.

So what's very good here?

Allan finally got really scared and broke through the denial and reluctance.

Although there was no real injury, other than the bruise, he hit his head, or maybe his shoulder, I wasn't here, I don't know, on the bedroom door and broke it. This is one of those doors you see more in tropical places, doors with slats rather than solid doors, and the slats were broken. When I went to close the door, I discovered that the doorknob had been jammed right through the drywall. There's a hole, and I will have to ask my son-in-law (such a handy guy) for suggestions on how to fill the hole up. He must have fallen into that door pretty hard when he fell down went boom.

That damage woke him up. Yes. He falls down goes boom. And yes, it's serious. Even though that broken wrist, that broken foot and sprained ankle happened as a result of falls a year and a half ago, was it?, he wasn't ready yet, and damage to himself wasn't enough to persuade him. You get ready when you're ready. Not before.

But somehow this time was enough to wake him up. He realized now that his health is Really That Bad. He's One Sick Guy.

He himself volunteered the information that maybe it's time for him to go to Centre Crest!!

We've been talking about it. And I've been reassuring him that I'll be THERE for him, less than five minutes away, that I'll be there as much as I'm there when I'm here. After all, he stays up in his room while I'm downstairs or out doing errands or twice a week going to my book clubs, or working out at Curves or Jazzercise. We're now talking about it. I'll be his advocate if there's a problem with a doctor or nurse, like I've always done. I'll be looking after him like I've always done. I'll be there.

And he said that if I wanted to put him in Centre Crest he won't resist. I said we'd talk with the doctors. We see the cardiologist on Tuesday and the primary doctor the week after. I may call our primary doctor. He's out of town, but Allan asked me to please call the doctor, now he's scared. I can talk with the Nurse and explain the situation. This nurse and I already talked about what it would take to get Allan to be willing to go to Centre Crest. And the cardiologist already asked me, "Isn't it time for Allan to be in Centre Crest?" The primary doctor already said to me that Allan should have been there a year ago.

So the Big Fat Good News here is that finally, at last, we've had An Incident that broke through the denial and refusal.

Now we get down to the nuts and bolts. I've changed his Medicaid insurance to what I'm told is a better company. We'll talk with the cardiologist, and I will talk with the primary doctor's nurse, and sometime in this year we'll finally get somewhere.

Or so I hope. I can't carry all this responsibility. Allan's health is so bad, and he has so many health problems I can't take care of all of them. This man needs a team of nurses and specialists. His refusal and stubbornness have made things worse and worse. Yes, he has Vascular Dementia and possibly the beginnings of Alzheiimer's (and he's driving me crazy because he can't remember that the locking mechanism in the back door is broken, no, it's not fixed yet!!!...), but it won't be his dementia that finally gets him into Centre Crest. It's all these health problems! He's turning into his mother, and there's still a window of time to deal with the diabetes and the sodium problem and who knows what else. He'll never Get Well Again, he'll never be that young guy again, but the way I see it, with proper medical care he can get somewhat better. Life can be improved.

But he needs Real Nurses, not this exhausted, uneducated Play Nurse and Make-Believe Doctor (with help from the internet and Nice Doctor Google) who is struggling and failing to provide what he needs.

But finally he's become willing and says he won't oppose me or the doctors.

That's a Big Deal here. That's Major Good News here. I will have work to do and things to deal with. But finally, finally, at last it looks as if I can get Allan into the nursing home without having him go ballistic. It will take some more time, but it will happen this year at last.

So Allan fell down went boom. But maybe, finally, there's light at the end of the tunnel.

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1/4/15 7:39 P

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Enjoying this 1st Sunday of 2015. Quiet day, football winding down and Bob's taking his long Winter's, Sunday nap. Only challenge is tonight, getting Bob to take his first dose of contrast for tomorrow's Scan.

Temps. are dropping outside and the winds are picking up. So put in a DVD, fixed some Hot Chocolate, snuggled in a heavy throw and will watch Angels and Demons. Then hope for an early to bed for me.

Have a great week and stay Warm and Dry! Michele

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Hope everyone has had a very Happy time of New Years. Our's was a quiet one, did watch that Ball drop in New York. Robert awoke on Friday, thinking it was Monday as many businesses were closed the day before. However, that cleared once his Favorite soap opera came on the TV.

Lately Bob has been basing what he wants as he finds out just how his Chemo is working on his Cancer. He's scheduled for a Scan Monday. This will tell us if the Chemo has continued to shrink the cancer or perhaps its time to try radiation. One thing for sure his Bone Marrow is not producing his blood cells as it should and the last 2 shots he has received are just not stimulating the Bone Marrow.

Have a better day tomorrow. ........... Michele

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1/3/15 8:04 P

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Oh, Irene! It sounds to me as if the Alzheimer's is progressing! I've heard that Alzheimer's does eventually lead to difficulty and inability in eating.

And I sure hope that your local Alzheimer's group can give you some help. This is only a brief post, but don't let the brevity give you the impression that I don't care or that I take your situation lightly. I've been there, dealing with the local Office of the Aging and trying to find out what there is to help. I sure hope they have some real help for you and Maurice.

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1/3/15 7:12 P

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Slow responding...life support...

It happened here. My Favorite Family Member's partner Helga went to the hospital to have a stent put in. She was confident that there would be no trouble, so she didn't bring along her Living Will and Advance Directive.

Her wishes were Do Not Resuscitate.

Well, uh-oh, something sure did go wrong!! Helga went into cardiac arrest. She died there on the operating table. Since the doctors did not know that Helga had wishes or a Directive, they resuscitated. It went on for almost an hour before they got Helga's heart to beat again. And by that time it was too late. Her brain was fried. They put her on Life Support, but Helga was gone. It was too late. The life support was keeping her still alive, but there was nobody home. Helga was gone. The talented artist was gone. The family matriarch was gone. There was this body on the bed with artificial respiration keeping the lungs breathing, and I don't know what all else keeping a brainless body alive, all kinds of needles and tubes stuck in her, and once on life support it's not that easy to get her off.

Her son and my Favorite Family Member (who had her Power of Attorney), together with the rest of the family, had to meet with the doctor in charge and all agree that Helga did not want to go on and on and on when there was nothing left of her.

Now what happened? I believe they kept her breathing, but removed the feeding. Did they remove hydration? I don't remember. Helga died just under a week later, either on New Year's Day or close to it, I forget now.

Since they say hearing is the last sense to go, and since newer information gets lost while earlier learning lasts longer, those of us who speak German, including me, spoke simple and loving things to her, in case there was any cognition of any sort in there. Helga came to America unable to speak English. But the doctors were of the opinion that her brain was toast, and only some simple brain stem functions remained.

As for your question, when to cut the life support off, have you and Robert talked about this?

Allan does not want to be like Helga, and neither do I.

First rule, if we go to a hospital for an operation, we have that Advanced Directive and Power of Attorney paper in our hot little hand.

We be clear about what we want, and we don't just assume that everything will be all right.

We both say to try to resuscitate for five or so minutes, while the brain still has a chance. But don't go on and on for almost an hour, by which time the brain has been trashed.

I know I don't want to just go on and on and on as a vegetable, and neither does Allan. My family knows this.

Oh, and I also am a lifetime member of Compassion and Choices (formerly the Hemlock Society), and I support Death With Dignity.

And we want to donate our bodies to Science. My Favorite Family Member has already done the paperwork, and this is something I need to get done (to-do list) for us.

But as for your question as to when, I'd guess that you and Robert have to discuss this and decide what you both want, and when life is no longer worth it.

(Helga was so talented. She made beautiful things out of clay. She gave me four of her pieces, one of which is a truly lovely dish. She couldn't believe her things were beautiful. I felt so bad for her that she'd put herself down and think her art wasn't that good. My daughter and went to the Art Museum on the Penn State campus, and we saw a ceramic dish on display. I said, "Helga's dish is every bit as good as this one, if not better. They could put Helga's dish in here." I've always felt to sad that Helga could never have the self-esteem to realize just how fine her clay art work was.)

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12/31/14 3:03 A

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Hi on last day if the year,
There is our famous national health sytem. Free to us as seniors, heioital, surgery, meducations everything, but it's over used now. People come hete from other countries to have difficult births and surgery. Doctors seldom make house calls,
I can ring the ned centre at. 8 30 am. I can ask then for a doctor to call me back. Then I tell them my concerns by phone and they say do this or do that, or come and see me at such a time on that day .
It will be emergencies only today , is this one? He is eating a bit of soft food and is probably part of A, he's drinking and as I say eating a little.
On the plus side I contacted local A group about him in general. They say they are there to help and want to discuss it all with me and see what help they can give me . I am taking that up, but right now it's basic staff only everywhere till New Year, Best wishes Irene

Irene in Nottinghamshire UK
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12/30/14 11:05 P

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Irene ..... doesn't England have some type of Home Health Agency? Do doctors still make house calls over there? Here there are still some Physician practices that do make House Call, with the Doctor or a Physician's Assistant pr Nurse Practitioner, thus being able to see the patient in there own home setting. For some they will not act as the do at the Office. At this particular time the Insurances Companies here feel it is less expensive for them to keep a person in their home and not go for placement. How ever that line of thinking tends to change every 10 to 20 years with the Insurance Companies. Yet, it still is a decision that is not easy.

Another decision...............when does one cut off life support?

Have a great and Better 2015! Michele

Michele - Northern Kentucky


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12/30/14 9:37 P

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Good day and difficult day today. Things went pear shaped and I didn't get things done the way I had intended, and now I'm done for the day.

On the other hand, today is a happy day. I got a new/old/two former owners car.

The last time my car broke down at a crucial time did it for me. I was on the way to the doctor's office when the car broke down. It was the coldest day so far of the year, and I was wearing sandals and a light jacket, not anticipating this problem. I'm glad it was my appointment, not Allan's. But this had happened before, and I missed out on important things because I had no way to get there.

So since then I've been planning to get another car. New cars are so expensive, though! I was shocked to death when I saw the prices on the new cars. The last time I got a car was in 2004 and it was a 2003 model the dealer wanted to get off the car lot, and I got a good deal. But now new cars are so horribly expensive!

So I bought a used car. I will feel better with a back-up car. I absolutely MUST be able to get Allan to the doctor. We go to the doctor, that's what we do. We go to the doctor, and sometimes we go to the Emergency Room, and sometimes we end up in the Hospital. I must be able to get there.

So New Car. Well, old car, but new to me.

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12/30/14 9:26 P

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Oh, Irene! Is there no help? Is your doctor not really helpful? It sounds as though Maurice is rapidly deteriorating.

Yes, I've learned that difficulty eating is a symptom of Alzheimer's.

Is it time for a Care Home/Nursing Home?

That's a difficult decision to have to make. It feels as if we're giving up. It's such a painful thing to have to think about. And it's so horrible to have to persuade our loved one that this has to happen (I'm going through that now)

In Allan's case the dementia is nowhere as advanced as with Maurice, and likely Bob. He does have dementia and does need care, but it's his awful physical health that is the issue. Irene, my heart goes out to you.

I don't know what the differences are between assistance here and in England. For me, it's learning as I go.

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12/30/14 9:18 P

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Hello, Michele..So Bob is getting confused about what happened when?

How long ago was it? Two and a half years? Three and a half? Can't remember now. Allan lost all sense of what happened when, and was thinking that things that happened teens and twenties of years ago were happening now. And it was paranoia because the things he was thinking of were bad things, that that awful woman was coming to get him and get our (my, actually) money, and he was anxiously looking out of the window, expecting a car to come along and come up to our (my, actually) house.

I suggested to both Allan and the doctor to try Prozac, since it had worked in the past. And like magic, the Prozac did the job and got rid of the paranoid time warp.

But apart from paranoia of the type Allan had, I learned from the book, "Let's Talk Dementia," that this happens. This happens, and if it's dementia that is happening, there's no point in trying to convince the loved one that it's turning 2015, it's not 1995 or 1965. Just go along with it.

Allan went stone paranoid before I read that book, and the paranoia, so I think, wasn't dementia in his case. He really went stone paranoid and believed that that woman was on her way to our house.

I did try to tell him that these things happened teens of years ago, and I showed him that we were safe now. I did reassure him.

But when it's dementia that causes the time confusion, well, I do hear that it's normal and to be expected.

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12/30/14 1:56 A

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Hi on 30th . Not a lot of snow but it's so cold ifs frozen over and there's icy patches in places, dangerous to walk when you are not steady on your feet,
I haven't been out since 25th , we have to walk to places, no car, it's just not safe to do so, I have a big food delivery being delivered today, that should keep us going for a while,
M is worsening with good days becoming fewer. Since the choking he had while eating chicken now he doesn't want to eat as feels it could happen again., I hope to get him to eat soups and soft food today, I am having to do more for him now, dressing and undressing now an issue. He slept all night fully dressed , yet denied he was dressed when I told him about it. He misses taking his pills unless I stand over him and supervise. His breath was smelling which is unusal ,I asked was he cleaning his teeth lately ? Oh no. So now I am having to guide him though everything , I am quite depressed about it and wondering what next and how do I get help.

Irene in Nottinghamshire UK
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12/29/14 11:28 P

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Evening, Irene, how much snow did you get? We had flurries here Sunday that did not stay around long at all. Tonights news forecasted snow flurries again for this coming weekend but then again it could also stay all rain. .... Does M have days when he's fine and Days when he stays confused? Here Bob is starting to have things that happened 2 years ago as happening 1-2 weeks ago! Which at present I can understand as his bone marrow is not produce those blood cells to carry oxygen to his brain or the other organs. They have tagged it as Chemo induced anemia which is added to another diagnosis of post-op anemia. An I wonder why I'm tired and so darn depressed.

Always heared that when the going got tough, the tough got going ( went shopping ). So I did just that, while groceries shopping I picked-up a Waffle Maker and from there went to the Office store ( which to me is a toy store ) and picked -up a few things I needed and were on sale. and then went to Starbucks and got a coffee cup as they were having a sale. Now, need to think of what to get myself for my Birthday this month. Bob enjoyed the peace and quiet while I was gone. All in all it was a good day.

Have a better day tomorrow and a peaceful week. Michele

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12/29/14 2:08 A

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Hi on Monday' I like your thinking on Laura , it shouldn't be stressful but but is, we have enough stress going on in our lives. M is a lot more confused now. I mentioned a granddaughter Emily and he told me he first met het when he was a teenager,
I don't argue , maybe he did know an Emily, but not this one. There were more incidents.
Then last night he started choking over his food, it's happened before and can be a feature of A when the brain isn't sending the chew your food message. It's alarming when it happens of course . He recivered later but was exhausted. I shall have to make sure he had all very soft easy to swallow food.
The snow that fell is still a around and is frozen so is dangerous to go out, we will stay home for a while. Stay well friends. Irene

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12/28/14 8:47 P

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I dumped Christmas a long time ago. My inlaws (first husband) totally ruined it for me, and once I was divorced I refused to have anything to do with that stinkin' holiday.

And then Allan came along - with that December 25th birthday! I can't get away from that holiday!

Now I'm slowly reclaiming that holiday. I do not participate in the rituals. I do not scramble around stressing over what presents to buy for people. We don't give presents. I don't do things out of obligation. I give people things throughout the year because I think this thing would be really nice for so-and-so, not because it happens to be December 25th. And we celebrate Allanmas, and that is enough!

I hope we all find a way to cope with the stresses that come up this year, and that next Christmas is more relaxed.

Do we have to go shopping? Is it really necessary to stress over what to buy for various people? Isn't it good enough that we have each other. Can't we just have a simple dinner together?

I do know that I refuse to stress over food the way I did this year. If Allan is not in the nursing home, or if he is and they send him to me for Christmas/Allanmas day, I will not drive myself nuts with all that elaborate food preparation. It will be in one pot. Something simple in one pot, none of this trying to have everything be ready at the same time and getting myself all worked up over it. Just dump everything in the crock pot and that's that.

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12/28/14 8:16 P

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Know yee that I did not have my usual Christmas Spirit this year and glad that its over with. Yet. sad to see it go! In someways I think Bob's diagnosis is behind that thinking and no real interest in gift giving this year as I usually do! Hoping 2015 leaves me with less depression and a continued frame of mind for Bob's Care and much more activity interest for him. Right now I can't forget 2014 but, do intend to learn from it. So in the next 3 days I hope to adjust my resolutions to include him as well!

Have a great week and Stay Strong and Healthy!

Michele - Northern Kentucky


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12/27/14 3:23 P

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I can't really say that I or even Bob had the Spirit of Christmas this year. Still am not interest in shopping or even a gathering of any kind. I'm tired and just plain wore-out. Hope the coming year allows me to shake this wacky depression under the rug. Lifes just to short! ! ! !

Have a Blessed tomorrow............. Michele

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12/27/14 12:44 A

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Looks like the spirit of Christmas stayed away this year, with occasional look ins. Christmas Day wasn't good, I had a weepy poor me session in the morning. We went to one sons for dinner. As I expected far too much going on and too noisy for M so we didn't stay long. Then the rich food he had eaten went straight through him. Oh dear. Whata job for Christmas evening cleaning up a bathroom . On 26th I made it s plain food day and put all unsuitable gifts adide to give away. Such shame but if people don't ask what they can buy I can't give them ideas, I would have loved more plain white tee shirts for M not several boxes of chocolates he can't eat. We have snow now but not a lot . Happy new year . Irene

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12/25/14 10:05 P

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May the Spirit of Christmas be with us all through the coming Year! Gods Blessings to each and everyone!

Michele emoticon emoticon

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12/25/14 9:03 P

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It's time for me to go upstairs now. Christmas is over, together with Allanmas.

It sounds like Christmas wasn't all that good this year. And I'm not surprised. It's so hard to be a caregiver to someone who is going downhill.

As for me, it was a mixture. For me the stress was thermonuclear. I have real issues with cooking, and there I was, trying to cook an entire dinner and have everything be ready at the same time, and I simply couldn't deal with it! And then our Favorite Family Member came over with his double boiler ready to help deal with these already cooked lobsters that Allan had wanted...what do I do with these things???!!! and we got in each other's way trying to get these things prepared...I HATE COOKING!!! I always did, and things haven't changed!!

The stress over cooking really trashed me.

But somehow we got some food on the table. And instead of singing "Happy Birthday" to Allan I pushed the buttons on the CD player and played the Beatles "When I'm 64" which Allan is and never expected to live this long. He's outlived his mother, and in another three years he'll outlive his dad, if he lives so long.

In spite of all the stress we did have a nice birthday dinner for Allan.

But as I was gritting my teeth and freaking out and swearing and cursing and struggling with cooking. I was swearing like a drunken sailor. I swore that I will never do this again. Maybe Allan will be in Centre Crest and I won't have to struggle with cooking next year. And even if he's still here, well, I am NOT going to struggle like I did this year. Sorry 'bout that. It will be something VERY SIMPLE in the crock pot.

Allan has been repeating, over and over, the same things, "Thanks for such a nice birthday," and "Thanks for the good food," and "How nice of Joe to help with the lobster," and "How nice that Meri was here, too bad that Pete couldn't make it," and "Such a nice birthday, the best ever." Same things, over and over, repetition, over and over, and every time he says it, I say, "I'm so glad you had a nice time, HoneyMan!"

I'm glad he had a good time. That's something to be happy about. And I'm glad all that stressful cooking is over with.

And I tried to keep the sodium down, but he may have still had too much, even though things weren't salty. This sodium issue is too much for me to deal with.

I'm whipped now, really tired. Going to bed now.
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12/25/14 2:13 P

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Nope this year does mot represent Christmases past. Strange, in July I was looking forward to this Season but, some how that all was shot down. Perhaps the downer here was his Diagnoses.

However, that doesn't stop me from Wishing Everyone a Merry Cherry Christmas and a Very Happy New Year! Michele

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12/25/14 2:42 A

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I do not feel festive this year but as I say we are still here even if a bit worse for wear.
I hope you all have a good day,
We are asked to our sons today but so many there including 7 excited children, I said we will go just for dinner .
No M hasn't a walker , i don't know if he would, he is a stubborn old man!
Find some calm today. Irene

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12/24/14 8:46 P

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Oh my, it's Christmas eve now. I'm going to go to bed soon and not worry about the kitchen until tomorrow morning. Tomorrow is Christmas and Allanmas, and I'll play the Beatles song when Allan comes down, and then I'll hustle and get busy and finish cleaning the kitchen and getting the food ready. But now I'm tired.

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12/23/14 11:53 A

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Morning or what is left of the A.M. Much better night, Bob, even though he slept most of the day, did sleep until around 5 this morning. Also seems in a much better mood today......Has M ever used a walker? The walker would help with his balance, just by using it outside with small walks at first, he may get the hang of that and want to walk more. Just a thought. I have noticed that for the last 4 months Bob has been using his walker at times instead of his cane inside the house, as he says he feels more steady. With his low blood counts I can see why he would be using it...... Tomorrow he should have his Chemo, that is as long as his blood work shows an improvement over last week.

Have a Blessed Day! Michele

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12/23/14 3:00 A

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Hi on Tuesday I was just reading . Sparks article about being hard on ourselves . Don't expect perfection etc, I don't, just a little progress is enough. The article reminded us we are all work in progress, I use that term in sewing . I have a lot if WIPs with few finishes lately , I start things then get bored and move on to something else . I think that must be linked with our caring life , that's WIP and we have set backs with little progress at times I took M out yesterday but it wasn't a success, he struggled to walk had frequent rests ,then I struggled to get him home, he was leaning on me. So I think that's his last walking done . He is happy at home with tv, on I shall accept that now. Really he's little bother, quiet, happy with himself and doesn't expect much, only me to be around all the time ! Best wishes at this busy time, irene

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12/23/14 12:22 A

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Depression, is no stranger around this abode. Bob is even showing signs of depression since they stopped his chemo two weeks ago. He actually has no blood cells for his Chemo to work on. The shots to stimulate his bone marrow to produce new blood cells has not caught on as yet. He is scheduled for Chemo this Wednesday. Hope we can find a little Christmas Magic this year!

My visit with my Cardiologist last Friday, showed me that I have totally let myself go, and it needs to stop. Now all I need is to get myself together prior to when all this started 8 months ago. So this Tuesday is my starting point for another year, with a lot more motivation, support and encouragement for the both of us. My Mantra for the coming year: " just Do It! "

Have a Blessed Week! Michele



Michele - Northern Kentucky


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12/22/14 7:45 P

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How is today? I don't know. Yes and no, I think. Not enough sunshine, and just more of the same ol' same ol'. Mild depression today, feeling like we just go on and on and things never get better, only gradually worse.

But now it's evening here on the Right Coast of the States, and you in England have probably gone to bed by now and should be asleep. Before long I will get my bath and then watch a video for a while with Allan and our cat, and then sleep, merciful sleep.
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12/22/14 2:31 A

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Hi on Monday . What ever works for us is good, even Sparks points ! Why not?
It's the run up to Christmas now but just another week really, , I had hoped to get M out for a local walk and buy bread and milk . But it's very windy out , he dosnt like cold or rain so will see later what he wants to do. Usually it's tv all day for him. I accot tht but he gets tv and reality mixed at times. Look after yourself . Irene

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12/21/14 8:25 A

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I'm laughing at myself today. I can get motivated by the silliest and most trivial things. But I'll take it! Anything that keeps me moving along, I'll take it.

Now it's Spark Points. I had reached the maximum some time ago, and I no longer felt any pressure to rack up lots of points each day. And now Spark People has added new levels, up to 350,000 points.

Once more I can have fun feeling that urge to do better and rack up points. Which is good. I had simply stopped tracking my food and have been sloppy and not watching calories. And I've been getting sloppy about doing all my exercises and tracking.

Even if it's silly to track points and do all that stuff, if anything can motivate me, I'll be glad to take it. My exercise has been falling off, and I gained weight this week.

I absolutely cannot afford to let my health go! (None of us can!) This is really non-negotiable. I do NOT want diabetes! I do NOT want heart trouble! I do NOT want to end up like Allan and his mother! This is really urgent. I'm 73 now, but it's still not too late to take care of my health. It's just too easy to fall into deep depression and just eat eat eat carelessly and sit on my fat butt.

Patience! Sooner or later we will put Allan in Centre Crest. The sooner the better, actually. He's deteriorating before my eyes, spending more and more time just lying around or sitting around, and as he sits, his muscles atrophy and his health fizzles. I have to get the doctor moving and making some decisions and getting some things done.

Onward and downward! as Susan used to say. I miss Susan and the other people on this team. I hope they are doing well.

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12/21/14 2:45 A

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Hi on Sunday. I am sure we think alike in many things , getting stressed unable to deal with ut, frustrated, so it goes . Yesterday our son Mike visited with his daughter Amy. Who's grown up. They were quite shocked to see changes in M. he's bent over he shuffles round legs slightly apart, doctor says that to retain balance , he doesn't say much but was happy to see them, They had done food shopping for me so we put it away had a coffee and talked a lot. M just watches and listens I do tell him at times, we are talking of so and so to help him feel included, he can not keep up with conversations ,
We went out for lunch to the next town, I asked Mike is take his dad to the restaurant. Amy and i would join them later, I wanted to get toiletries and moisteriser for myself, Amy helped me choose some. The we joined the men and ordered lunch .Mike had helped his dad chose his meal. He can not read menus now. We enjoyed the meal and chat. M went to the men's room , soon after he needed to go again and asked Mike where is it? He had forgotten in a few minutes.
Home again M looking worn out so they left some could have a nap. They willbe back after Christmas . Good.
Then others see changes in a patient I think we then look and say oh yes I see what they mean. We are in 24 hits a day duty ,basically often too tired to take in much.
I am trying to avoid stress in other ways, the caring is stress enough . But we will carry in doing ut and grateful for any breaks, have a calm day. Ree

Edited by: STITCHINGNAN at: 12/21/2014 (02:47)
Irene in Nottinghamshire UK
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12/20/14 8:25 P

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Oh Michele...it sounds as if you're health is suffering with all the stress. This stress is no joke. And the whole caregiving thing is so tiring.

I've been looking at how my life is going, and taking care of Allan trumps everything, and it has affected how I feel, how I see myself, what my life is, everything.

Today started off, well, uh, well. I got up early early, because I had a 7 AM physical therapy appointment. And I remembered how back in the old days I'd get up early early early, and my best hours were in the morning. I like being a morning person.

But nowadays I sleep till 6:30 and sometimes 7, and occasionally even 7:30, and as soon as I wake up I feel crushed by an avalanche of problems to solve, things to clean up, medicine to give, food to cook, doctor appointments to take Allan to, one thing after another. My life is not my own any more.

Oh, grump grump grump. I felt kind of good for a while this morning. Now I'm depressed and tired and ready for the day to end.
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12/19/14 9:51 P

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Cardiologist was not happy with me today. Got my scolding and lecture and asked " What's up with you". When I told him, he replied that just will not do. so we set out a plan. He doubled one of my meds for blood pressure and wants a weekly and month chart on my weight and exercise. No problem I told him and there will not be any. He did say he would see me in a year if not before. So now all I need is to look for is that STRESS FREE ENVIRONMENT! lol

Have a stress free weekend! Michele emoticon

Michele - Northern Kentucky


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12/19/14 7:53 A

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Hello, Michele...congratulations on getting a good night's sleep! Sleep is so very important! We need the rest, and for a while we are forgetting our troubles.

I took Allan to the doctor, the primary care doctor, that is - it's been doctor doctor doctor as usual lately - and nothing was said about a nursing home. The subject didn't come up, and it seemed to me that if I were to bring it up, I would only cause stress and trouble. There wasn't enough time to really talk about it or deal with the issue.

I will just have to write a letter for the doctor and ask just when we intend to bring the subject up and deal with all the problems. We could just drift on and on for months while Allan gets worse and worse and I get even more stressed and sick.

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12/19/14 7:43 A

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Hello, Irene...I've heard that this is something that eventually happens. He can't remember the word for something, so he substitutes a different word. For Maurice it's "pill" instead of "case". Allan once said (and I reported it on this forum) that he'd dropped the "stone". I forget now what it was that he'd actually dropped.

Please forgive yourself for snapping at Maurice. It's so hard to be totally calm and pleasant all the time. We get tired, so tired, and there's no end to the situation.

I'm glad to hear you found a good eye care place that treated Maurice well - and gave you a bit of time to yourself to get things done.
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12/19/14 3:04 A

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I try not to get angry but when I am tired I do. Yesterday he woke me from a needed nap saying my he had mislaid one of his pills, oh I duggrster places then asked what pill is it.?
He held up his spectacles saying the one for my glasses,
You havnt a pill for your glasses,
The one I put my glasses in.
Oh the spectacles case?
Yes.
I fiund it but was tired and did say angrily you woke me Up to ask about something that could wait, it was not a pill , he used the wrong word . I was sorry later of course .
I took him for an eye test yesterday I rejected major chain places which are noisy, I chose a small place run by one couple, I talked to them before hand and felt assured they were the right ones. I was most impressed . At all time they treated M with respect and care,. A standard eye test took an hour . Then he needed drops in with more checks, so I was told I could go somewhere else if I liked for half an hour as the drops dilated his eyes. I nipped home as I had to see and pay my house cleaner before she left, then I went back and with him for further test, in all we were there two hours,
Not a lot can be done with his eyes, one was damaged by a stroke , he can't see much form that eye, the itehr is clouding over. He may have laser treatment at the eye hospital but it won't be yet, so I realised how bad his sight is and it explains a lot. He likes going out in his own just to local places but I now think I can not let him cross roads etc on his own now. . I had to guide him home and hold in to him after the eye tests his eyes were not good,
He sleot a lot the rest of the day, a quiet day today I think, take care Irene

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12/18/14 12:00 P

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Morning, nice night last night finally got a restful nights sleep. Snuggled up and sound to sleep. Cut the heavy caffeine off early and shut the PC down early, and addressed Christmas Cards and finished by listening to the news and off to bed I went. Planning on a quiet day, Got some cookies to bake and Christmas Cards to finish. I have my last visit with the Cardiologist tomorrow so want those vitals signs to be well within in the normal range for a change.

Have a great and Safe Day! emoticon

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12/17/14 4:30 P

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I am angry at the Cancer and now the Chemo not Robert. For years I have been asking him to quit smoking, walk more, and allow people to do thins the way they want to and not his way. Well now he is telling the Professionals that what they are tell him I've told him over the years and now. He knows that what he wants me to do about Christmas and the oldest Daughter 50th Birthday...I will not leave him unless some one would be here 24/7 here and not a phone call away, Now from his blood work from today. He has no blood so his chemo has been canceled or delayed until he once again can handle the Chemo. The Ono and his PCP wants him kept at home for as long as possible.

No I'm not angry at Robert, just a little put out. Michele

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12/17/14 9:00 A

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Hello, Michele...I should tell you what a counselor told me years and years ago.

This was back in the Bad Old Days, back in the 1980's. Allan was awful, and I was going to the Alcoholism Council in Ithaca as the partner of an alcoholic. I'd also been going to Al-Anon.

In Al-Anon I learned I was not supposed to be angry at an alcoholic. The "One Day At A Time" book told me, and I paraphrase here, "You wouldn't be angry at a cancer patient, now would you? So how can you possibly be angry at an alcoholic?"

The idea was that neither the cancer patient nor the alcoholic can help what is happening, and it's wrong for us to be angry.

I will be forever grateful to this counselor. He said, "Why shouldn't you be angry at a cancer patient?"

Well, wow...I'd been hearing over and over for years that we must never be angry. If we feel angry we should look at ourselves and see if we're at fault.

The counselor said, "Of course you can be angry at a cancer patient! If the patient refuses to take the necessary medicine, if the patient doesn't cooperate, if the patient is rude to you, of course you can be angry. And you can be angry at an alcoholic, too."

I get the impression that Robert is sometimes pretty rude to you, and demands that you do things that he could jolly well do himself. Back in the Bad Old Days Allan would be nasty and mean even while I was going out of my way to do things for him and take him to doctors at my own expense.

From things you've said here I get the impression that you have plenty of good reasons to be feeling angry about your situation.

Back in the Bad Old Days I didn't yell back at Allan or be abusive back to him. But I didn't blame myself for feeling angry and disgusted at his bad behavior.

You don't have to yell at Robert if he does or says something rude or boorish. But you can certainly validate yourself and not blame yourself if you feel disgusted and angry about it.


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12/17/14 2:42 A

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Hi on Wednesday , it's crunch time for Laura , you know you are not helping yourself or Alan by keeping him home . Yiu did try your hardest, don't feel guilty at all.
I never thought if seasonal depression but when I put in myfacebook status how I felt so many reponded saying they did too. This is quite a dark apartment . I just try getting out more.
Next morning Maurice had forgotten his rant about moving to his old house so I never mentioned it.
He is almost normal some times others he's a different person. I am going to seek help in new year, I have an appointment with my doctor re my own health but will ask about day care . He doesn't need help with washing dressing medications etc yet he's ok on those with remiders at times . But he hates being on his own, I have asked for family help once a month so I can go to book club, he's ok during day time if I go out for a short while. I am meeting a friend this afternoon for a good chat. I am ok at home with craft work and my internet chats but we all need to get out and just talk and have normal conversationd and a laugh .. Keep well yourselves, Irene

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12/16/14 10:55 P

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emoticon Laura, then with his next doctors appointment, why don't you get the ball going while you still can. We all have enough on our plates to draw depression our way. Except mine at present is slowly turning to anger and I shouldn't feel this way but, I do.

For the season I'll keep that false cheer and smile. Then I should know whether I'm fooling everyone or just myself.

Have a great week. Michele

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12/16/14 10:31 P

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I get that seasonal depression has to do with light. We're indoors and don't get enough light. I used to go stir-crazy in the winter, but when I moved into this house I looked at my kitchen door and said, "Either I will go totally crazy, all closed in with cabin fever, or I am going to get a new storm door.

I got an all-glass storm door, and I can open the door and leave the storm door closed, and I can see light. I can see out. I can see the street. I can see the outdoors. And that makes ALL the difference. It's a sanity-saver. I can feel the difference.

My depression is due to feeling disempowered and invalidated. Yes, Allan is loving, and that dear lovey-heart affection he gives me is the carrot on the stick that keeps this tired little donkey going. But this donkey is tired, really tired. His health is so bad. The dementia is a problem, but not anywhere as much a problem as our dear Maurice's Alzheimer's is. It's his health.

I'm not doing Allan a favor keeping him at home. No. I'm only a play nurse, a make-believe doctor, and I can't take care of the really serious health problems he has.

I can see the effects of sodium. If he indulges in salt, we see it by the next day. He swells up like a water balloon and his legs seep and drip and I have to change bandages like changing a baby's diaper.

But I don't see the effects of diabetes. I'm so tired, I'm so exhausted and burned out trying to keep the sodium out of his food, I can't manage carbs for him. And I do so much else, I don't manage blood sugar. I'm too tired. This is bad. He needs diabetes management. His diabetes is still in early enough stages that with diet and exercise he might be able to postpone problems and medication and all the stuff that goes with diabetes.

But I can't make that man lose weight! I can't make him exercise! I'm struggling to manage his sodium, and it's hurting my mental health and physical health. I can't manage carbs in addition. I can't manage calories for weight loss in addition. I can't make him walk daily and do physical therapy. And I don't have the authority! I agree with my friend whose husband had cancer. The nurses and doctors and institutions have an Authority we don't have, and can get compliance when we can't.

(I accidentally pushed a button before I was ready to send this message. So I clicked on edit".)

I've been aware of this for a long time. I cannot get Allan to do what he needs to do. But when the doctor or nurse or physical therapist says, "Time now for your physical therapy, time for your walk," or, "Here's your dinner.," he will most likely do it. But when I say, "Let's do the exercises," he says, "Oh not now. Later maybe, but I'm not ready now. But he's never ready when it's me.

It's nursing home time now. It's a matter of health for both of us. Allan doesn't see it, and I can understand. We love each other, and we have such lovey times together, and our dear grey cat joins in. Lovey love is wonderful, but while we're together petting our cat and being lovey, Allan's health gets worse and I get more and more stressed. His awful health and my stress are just no good.

The longer I allow him to stay in my house (and this is really MY house which I bought with the intention of living ALONE) and take the limited care I can, the more I allow his health to deteriorate. He needs not only his sodium, but his diabetes/carbs managed. He needs real exercise and weight loss. Never mind his Leiden Factor V and all the other factors. Never mind that he has a large clot in his aorta. We have a seriously sick man here, with dementia as well ("What day is it?" for the umpteenth time today, and I tell him over and over what doctor we're seeing), and as long as I keep him here, he's not getting the nursing care he needs.

He doesn't get care, and I get sick.

It's so hard, isn't it, to reach the point where we realize our loved one should be in a care home (if we're in England), a nursing home (if we're in the Colonies) (oh, and speaking of the Colonies, I was at a website [Jacquie Lawson e-cards] where she spoke of us as "The Most Troublesome Colony", explaining why there are such lovely cards for the Fourth of July for England's American Cousins; and I feel like a cousin, being of English, Scotch Irish, Welsh ancestry, as well as a hefty dose of German, and 1/16th French [not counting the Norman French who came over with William the Conqueror], Irene, I feel like you and Maurice are distant relatives.

Oh, look at the time! I should have been in bed by now!
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Edited by: LAURANCE at: 12/16/2014 (23:15)
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12/15/14 9:36 P

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Medical people may call it Seasonal Depression or Clinical Depression. For the last three years in my cases it's Clinical Depression and frankly I'm tired of it but, don't know how to stop it. So guess for a while I'm in for the long run! At onetime for me it was Season Depression as Mom passed during the Holidays. This was her happiest Time of The Year. In some ways I have Seasonal Depression added to the Clinical Depression and one will end in January and the other will continue. Yet we do what we do out of caring and Love.

Have a better week than the last! Michele

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