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MICHELE142's Photo MICHELE142 SparkPoints: (134,279)
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5/28/15 9:20 P

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Hospice was here today and found all vitals and his behavior complaint. emoticon Both the nurse and Bob were laughing, I WAS NOT BY A LONG SHOT!!!! Ever since last Sunday, Bob has asked for all three meals plus 2 snacks a day. Yet he only eats 1 to 2 bits and he is done. He reminds me of the 3 Bears, its eith to cold or to warm. The longer this goes on the more frustrated and emotional pain I seem to be experiencing. Its getting harder and harder to keep a civil tongue let along my hair.

Any suggestions?
Michele

Edited by: MICHELE142 at: 5/28/2015 (21:28)
Michele - Northern Kentucky


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5/28/15 8:46 P

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Oh, Michele! Yes! Sometimes it's these small things, these little changes, that are finally the thing that is just too much.

And these things sure are draining and exhausting! The straw that broke my back is having to prepare these low-sodium meals three times a day. That is the thing I cannot do, and it's breaking me down. People don't understand. I was tired, but I was functioning. Then that one thing changed, and now I can barely go on.

People who don't get it might not comprehend what happened when Bob started using the TV clicker to make a phone call, and the phone to change channels. But something happened for you. One more thing. Just one more thing that made it too much.
emoticon emoticon
I was sitting outside reading a book, and I fell asleep. This is the first time I've done this. But there I was sitting on my bench reading, and I fell asleep. I think I'd better call it a day now.

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5/27/15 9:53 P

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Tiredness.........believe you're not by yourself. My back could use some one to walk on it. I'm not used to lifting dead weight by myself, I always could push the intercom and get help. Now I have no help and no intercon to get that help for a lift. What is draining me more is that Bob does not know left from right and he is using the TV remote to make a call and the phone to change TV channels. This is a new behavior I'm dealing with 24/7 this could be my straw that breaks the camel's back.

Stay strong and Be Safe!!! Michele

Michele - Northern Kentucky


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5/27/15 9:11 P

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Oh, am I falling through the cracks? I'm so tired right now! I want to participate on this team, but somehow I'm just so burned out right now.

I did see my therapist, and I did talk with him about that miserable incident with the so-called "support" group.

Yet right now I hardly have anything to say. Just very tired...

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5/25/15 11:12 P

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Have stocked on incontinent supplies as well as dressing for when Bob, hits the floor and opens up a few skin tears. Since we had nothing planned for today, we just relaxed and watched the Tube in between eating and napping. Even though all be up late that extra sleep felt good today. That 3 day weekend was great yet, not long enough. I have noticed that my motivation to get up and handle the little things around here is greatly lacking at times. Seems as though every three months for the last several years a 3 day weekend picks up more energy for me to simply go on. This time though I 'm looking to schedule two days for myself. :" I've always heard that when the times get tough, the tough going shopping!"

Have a great week! Michele

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5/25/15 2:39 A

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Hi Irene, planning ahead buying supplies is a good idea. Sorry to hear how he getting less independent. I have a dear friend whose husband, about sixty, has Lewy Body disease and she is going thru similar things as you. She also has a 34 yr old severely disabled son in her home, he goes to dayhab three days a week. Son can't speak, do anything but walk and has seizures. So getting both of them up and cleaned up is weighing on her.

News: No liver biopsy but the lung one is on for Tues looking to see if cancer or midwest ailment many get. Medications will be started to try to turn liver around. More draining needed. I visit tomorrow. They think ninety percent of liver is shot. Just taking it one day at a time now. Reading up on things educates me. Only thing one can do besides praying.

Karen
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STITCHINGNAN's Photo STITCHINGNAN Posts: 11,373
5/25/15 1:47 A

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H,ello on Monday M has always been an early riser but lately he has been sleeping in longer. Which suits me as I love this quiet time early mornings on my own. Yet I do find he is more confused when he's had a lot of sleep. I have to guide him round his morning routine then.
He is deteriating in small ways, he's always prepared his own breakfast which is cereal with fruit in then toast with marmalade , I found him looking in the fridge for a plate , so now I am preparing it all with a glass of cranberry juice too now,
He was playing pool yesterday with our son. Grandson J was watching and told me grandad keeps forgetting which balls to play. I said it doesn't matter he's enjoying it.
I have bought pads and pull up disposable pants also bed protective pads, not needed yet but I think will be soon,
Glad you get to Church , Karen. Maurice doesn't like me going out leaving him alone. Even if our son is here he keeps asking when will I be back?
Have a good week,. Irene

Irene in Nottinghamshire UK
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5/23/15 10:11 P

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Oh lovely. When I am stressed, I get an odd, itchy, oozy patch on my left lower back. This started after I got chicken pox at age thirty five. I used to break out around my neck with blood red splotches but now it is this, unseen place. Better? It is a sign to rest and take good care of myself. And NOT to scratch it, put cool washcloth on it and no more. I am getting a ride to church in the morning as hubby wants me to go, but honestly I wish I could sleep in until ten. So will go to bed early and I know it will be good for me to see my church family. Husband is stable and able to walk around. Just can't enjoy food. But with them responsible for him, it gives me time to rebuild myself. Got to visit for several hours and walk with him. He rarely walked so it is great he is expected to walk four times a day there. Tuesday is the big day of biopsies. Monday is a holiday. Few work on that day.

Karen
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5/23/15 8:45 P

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Good gracious, Pixie! You sure do have SO MUCH to do!

All I know how to do is empathize with you and listen to you. And I can identify with running around from one doctor appointment to another.
emoticon emoticon emoticon

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5/23/15 4:41 P

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Pixie, you have so much on your plate. I do hope the chiro will help your Mom, if they are gentle, it can help. I have spine issues & a good chiropractor keeps me going much more comfortably. Been thinking about you all.

Karen
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MICHELE142's Photo MICHELE142 SparkPoints: (134,279)
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5/23/15 10:16 A

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Pixie, I know very well what you are going through. Around here things will happen in threes and lately I'm looking over my shoulder for what is next. I have had 4 good days and so has Bob however, I did notice over night that he is beginning to have balance problems. Thursday, I had asked Hospice to bring a Gait Belt out so now will be the time to familiarize him with its use. Just hope he can adjust to it as my back can use the rest. Here you have a 5'1" person lifting a 5' 5' person.

Hope everyone can enjoy this 3 day Holiday Weekend. Please, remember those lost fighting for our Freedoms. emoticon

Michele

Michele - Northern Kentucky


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5/23/15 9:01 A

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Hi everyone, I have been super busy the past few weeks and also not feeling well myself. But I have been reading posts. My husband was finally released from wearing the ortho boot for his broken ankle yesterday. He is so happy! But getting him to his appointments is such a hassle. I took him for blood work last week. We started getting him up at 6:30 in the morning. He is so slow it was 8:30 before I got him in the car. Then I took him out for a bite to eat. It was 11:30 before I could go to work. This week I had to take time off twice to take him to doctor's appts. His family doctor did prescribe an anti-anxiety medicine for him in addition to his anti-depressant and his Alzheimer's medication. He tells me nearly every day that he hopes he can die soon. I can really see a change in him. He looks more disheveled now. And he forgets what he is doing more. Yesterday he spent almost 40 min. in the bathroom. I think he kept forgetting what he was there for. By the time he finished putzing around he only had 20 min. to eat before we had to leave for the doctor. Mom hasn't been doing so well either. Her left shoulder has been hurting her a lot lately. I talked with the pharmacist to see if there is anything over the counter he could recommend. But she has a history of ulcers so there isn't much she can take. I got some heat wraps that last for 8 hours. It helped but they are expensive. Yesterday my daughter took her to a chiropractor while I had Dick at his doctor. It turns out she has a dislocated shoulder. She has such severe osteoporosis I am concerned about chiropractic, but he felt that he could help her. She breaks bones really easy and has had compression fractures in her spine, broken ribs, and a broken arm. I have been feeling a bit overwhelmed with all the medical appointments, and I have a co-worker who is working on having a mental breakdown I think. Everything is just kind o draining at times.

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5/22/15 11:14 P

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Irene, both Cranberry and Apple Juice is suggested at times with M's problem you posted about.

Karen, hope all those tests results all early and not later, waiting is no picnic! Get that " Me Time " as you can.

Laura, don't put your problem off to line. No one knows what tomorrow brings.

Have a great 3 day weekend and be Safe! Michele

Michele - Northern Kentucky


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5/22/15 9:01 P

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I seem to be developing my own sensitive bladder so I could relate a little to M's problems. I do like to drink water and hope he will have a change of heart and make caring for him easier. I just bought a washable pad for my bed if I ever get worse. I will go to doctor when we stabilize hubby. Now in hosp. for liver tests and a lung mri as well as nodules were seen on ct scan earlier. Specialist wanted him there to keep eye on. They took another 7 liters fluid off today. Oh my. But he can drink calories so now it is their turn to wait on him so I get time off. Will get a ride up there to visit and Sunday home alone to rest.

We have tiny place and only one bed, no sofa even. So time off to rest is good for me. And yes a bit of weight off him is good for him but very serious liver thing or lung, we don't know yet. Scary not knowing. But maybe next week we will know more about his troubles.

Karen
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STITCHINGNAN's Photo STITCHINGNAN Posts: 11,373
5/22/15 1:57 A

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Morning friends ,Friday chat, I am sorry some of yiu aren't receiving help and receive unhelpful comments , it's most frustrating,
I haven't really investigated official help yet, M isn't too bad, I am coping ,it's a great help my son living here part time.
We do get medical help. Yesterday I took M to a special clinic re the subjects not talked of much. Urine issues in his case, a very nice nurse was so good with him, asking him the questions. M then looked to me for answers but he was treated with respect.,. Tests show there's no medical problem just he has a sensitive bladder, , lots of advice and suggestions, I had kept an input and output diary which was given to me earlier,
Basically he doesn't drink enough, what he does drink isn't ideal tea and coffee mainly, I am to look at de caffeine versions, no fizzy drinks, more cranberry juice , and drinks with barley in,
Looking at washable underwear with built in pads and advised to get bed protection now .
I want to investigate those items on line now. Have a calm weekend, Irene

Irene in Nottinghamshire UK
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5/21/15 11:08 P

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Ooooh, Karen...maybe the loss of appetite is a small blessing in disguise. It sounds as if your guy is pretty hefty and needs to lose some weight. Sleep Apnea is no joke, my old geezer has it, but he refused to use the BPAP and oxygen.

And another person snoring and honking and wheezing next to you in bed is no joke. Yes, you need sleep seriously. Allan and I have separate bedrooms. I simply cannot sleep with another human. Our cat is another thing. But no people, please! I need my sleep and I cannot take care of another persons emotions and needs in the night. Sleep is just too important here.

So right now your fellow is losing weight, which is good. But it sounds to me as if you still have to deal with this loss of appetite due to loss of taste.

It is and it isn't. Five years ago I had my right knee replaced. The opioid medication for the pain removed my appetite. I couldn't eat. I COULD NOT EAT. Even though I should, I could not eat. I can identify with your hubby. I lost 17 pounds, which was great. Then I got off the pain medication and my appetite came back. Now I have weight to lose. Too much stress eating. Yes, it was great to lose weight. No, it was not a good thing since the weight loss was artificial and pain medicine related.

Keep us posted. My hope is that your hubby will lose weight to get him in the healthy range, and then you'll find something he can eat that doesn't taste awful so that he can maintain a healthy weight.

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5/21/15 10:56 P

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Hello, Karen...I'm an old lady, and back in the day, music meant listening to AM radio, or going to the record store and buying a record. Oh, those 1950's 45 records with the big hole.

The internet is magic for me (although now that it's full of advertising it isn't the magic it was when the Dreaded Computer came into the house and dragged me into the end of the 20th century), and Youtube is a source of more music than I could have ever imagined. Boy, am I glad for Youtube!

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5/21/15 10:49 P

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Laura, If I'm running in to similar problems as you are with Agencies....there is no chose.............

Michele - Northern Kentucky


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5/21/15 10:45 P

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Oh yeah. Can't youtube be quite a blessing!!! It is my main source of unusual entertainment and music.

Karen
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5/21/15 10:42 P

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Right now my DH is obsessing with not being able to eat much, and drinking Boost. He only lost ten lbs in the month, and is still 295 lbs, so I am not worried but he is stressing about it. We are waiting to see what the specialist says, and not sure what is done on first visit so can't comfort him much. I am just glad he can breathe now. One good thing losing the ten lbs is that his sleep apnea is gone. I wake up a lot in the night listening and praying. I am getting proper rest most nights which is so important. Waiting for answers is maddening. Then I read others stories here and realize there is a whole lot of suffering in this world most people aren't aware of. Hopefully by this suffering, I will learn how to comfort someone else in their time of need.

Karen
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5/21/15 10:41 P

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Hello, Michele...when I went to the Office of the Aging I learned that we are not eligible and do not qualify for an ombudsman. I do appreciate your urging, and you're a nurse and you know stuff. But right now I feel burned out and totally discouraged with agencies.

This is so familiar! We went through similar stuff in NY State! All this is old stuff! I heard this junk back in the mid '70's!

You're right, Michele. This woman is not with me 24/7, but more important, she doesn't know my reality. She doesn't understand a very different way of looking at things. She's a Radical Individualist. You choose. It's all Your Choice. As if people are radical individuals and are not a product of everything around them. Her experience and view are totally opposite mine.

If I found myself sitting opposite a woman in my position, I would not come on with that toxic "you choose" stuff. Rather, as I told Karen privately, I would say, "Hey, it appears to me that you're seriously conflicted here, so conflicted that you're paralyzed and can't act. Want to talk about it and brainstorm and see if we can sort out what's going on and relieve some of the conflict so that you can do more?"

Anyway I'm really super tired and burned out now. It was a really bad day. But I'm ending it with Youtube. Allan was asking me about a Charlie Daniels song, and one tune led to another. Right now I'm drinking homemade ginger beer and listening to Charlie Daniels "Orange Blossom Special":

https://www.youtube.com/watch?v=i2fi
h2
p4HMY


Thank you, Charlie Daniels.

Oh my, and now look what I've clicked on! Totally different music entirely. Debussy "Mandoline"

https://www.youtube.com/watch?v=fe10
sx
FSz_I


Thank you, music. Crummy day, but it's over now. I'll get over this. Next week I'll see my therapist/emotional hospice go-to guy and I'll process this junk.

But now I'm ending the day and going upstairs with my favorite emoticons:
emoticon emoticon

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5/21/15 2:58 P

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If what she said about a bed being available at Centre Crest is true. You need to talk to Centre Crest. If it is true and she knew from someone working there, both the home and the women...
broke a few Federal Laws. This is when the Ombudsman can be of help.

Laura, don't obsess on negative words of others, their not with you 24/7 when you are caring for Allan. I never did care for naysayers. Stay strong and let unknowing words roll right off your back. Michele

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5/21/15 2:03 P

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emoticon Karen, You can find someone here in the Chat Room at all hours so join us and Lets chat away. Caregiving a loved one. relative or friend is not easy and in some cases involves 24/7 care and supervision. Let us know just how we can be of help or if you need just to vent after a hard day, we are here to listen. Stay strong and remember to take time for yourself. Michele

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5/21/15 12:32 P

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Right now I'm feeling totally awful. My head is in a turmoil and I don't know that I can think very well at this moment.

I went to what was left of that dwindling face-to-face support group and came away feeling like a bad person who deserves to fail. I felt torn down rather than supported.

I got blamed for the fact that Allan isn't in Centre Crest. I got told that I have a bad reputation and that nobody wants to help me. I got told that the woman scolding me has suffered far, far more than I ever could and that I should not say anything. It's my fault.

Competitive suffering. Since somebody else has suffered worse than I did, I don't count...

It's all my fault because I won't throw Allan out. It's all my fault for choosing. There was disgust and contempt in the woman's voice. She told me that there was a bed for Allan in Centre Crest, but it was my fault that Allan isn't in it. I said that nobody had told me there was a bed available. I said I was told that Allan doesn't qualify because they think he isn't sick enough.

Never mind. It's my fault.

Right now I feel like dirt. Yes, it's true that I can't just reject Allan and abandon him at this time. I know that putting him in Centre Crest isn't abandoning him. But if I just toss him out it sure will feel like abandonment, and he is likely to go in with a bad attitude, which would be counterproductive. Better, I think, to have the primary doc and the cardiologist help me make it clear to Allan what he needs, and that he's being cared for, not abandoned.

Instead of tearing me down, I think it would have been more helpful to look at what I need to be able to do things differently.

Tearing people to shreds and making them feel like trash doesn't make people do better. It never made me be a better person to be told how bad I am.

Now it's time to take Allan to the doctor. I feel dreadful right now. I want to cry, but I must not. I want to be a better person, but right now I feel totally worthless.

I know that time will pass and later I may feel better. But right now I feel awful.

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5/21/15 12:11 P

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Hello, Karen...and I hope we can give you the encouragement and support you need.

I've found the people here to be understanding and comforting.

I've heard that certain diseases and certain medications can make food taste bad, which makes it hard for people to eat. It sounds as if you're needing to find what foods, if any, taste decent enough for him to be able to eat.
emoticon emoticon

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5/21/15 10:05 A

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I joined as hubby is home full time, he is 73, and ongoing tests as liver is failing. Finally narrowed down and going to specialist on Friday. His appetite is little and food tastes bad so trying to get him to eat now is a challenge. Using Boost but can't get calories to a normal level yet. Stressful but I don't feel like over eating. New to this care giver/ super encouraging role, so joined you all, hoping for support if I need it.

Karen
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5/20/15 11:14 P

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When someone does what they can do for someone else at the end of the day. That person is not selfish. When attempts to give care to someone that does not want that care. That is not neglect. When shelter, nourishment, clothing, assistance, and care are given that is not abandonment.

Those are my feelings in line with Caregiving and are only the basic of what is needed. What I did not post are what a caregiver needs. They would be different for all of us yet, the basic needs are the same. The End Of The Day is what counts and if we have done are best...that is what counts.

Have a better day tomorrow. Michele

Edited by: MICHELE142 at: 5/20/2015 (23:15)
Michele - Northern Kentucky


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5/20/15 10:24 P

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It's been a cool day here too. But I have problems with humid heat as well as horrible cold winter, and today was not at all bad.

Awwww....without being asked our neighbor came over and mowed my grass. But he also mowed my strawberry plants that were in the process of putting out a lovely crop of fresh home grown strawberries. But I can't blame him. Because I've been so totally depressed I've been unable to go up and pull the weeds (and I've been too depressed to mow the grass anyway). It didn't look like a garden. I don't blame my neighbor. Even as I survey the damage I give thanks that we have kind neighbors who care about us at a time when my life is horribly difficult and depression is crippling me.

Oh man, depression really stinks! I'm thoroughly disabled by depression. (And yes, I've looked into medication of the kind they have nowadays, and back in the '70's I was on antidepressants for five years, and all I got were side effects, no relief from the depression. I need genuine help, not medicine while life goes on, business as usual. Why do the shrinks not understand this? No shrink has ever, ever asked about my life and what's happening. Give a pill and turn away, and if the pill doesn't work, blame the patient.

Too many double binds. I'm dammed if I do, dammed if I don't. I can't do the right thing no matter what. The situation has me unable to deal.

I'm responsible for keeping Allan healthy. I can't keep Allan healthy. I'm also not *legally* responsible. Both responsible but not responsible. But Allan is incompetent and can't take real care of himself or make good decisions. Legally Allan is still considered competent. Allan needs more care than I can give. But I will have to pay. Unless I refuse.

I saved my money. I never lived above my means. Whenever money came into the house, I skimmed something off the top and saved it. And I lived on what was left. If there was something I couldn't afford, well, I couldn't have it. No maxing out of credit cards to get something I couldn't pay for. I lived below what other people might live above. I had less than other people might have.

But now I have a savings account and I own my house, no mortgage. Not a purse full of maxed-out credit cards.

Must I spend my savings and reverse-mortgage my house to support a man I'm not married to (for good reasons)? Must I blow all my money on this man, and then when I'm really really old and in need, there's nothing left for me?

I'm back in the 1940's and early '50's. I'm hearing my mother tell me that I'm here to serve, and I must not be selfish. I must give to others and not think of myself. Others are entitled. I'm obliged.

But then I hear people telling me to take care of myself.

But I can't abandon a sick man whom I love, even if he's a disabled and dirty unbathed old geezer.

Double binds everywhere. Can't win for losing.
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5/20/15 4:47 P

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Afternoon, temps today are twenty degrees lower than yesterday but, another good day is here again. Even though these good days are showing up I'm beginning to realize " the quiet before the storm. " Hoping to be ready for a hospital bed by the first full week of June. However seems I will have little help for downsizing before then.

Have a good night and a better day on the morrow. Michele


Michele - Northern Kentucky


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5/19/15 10:49 P

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Bedtime now...
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but I want to check in with dear people first...

My daughter and I are having conversations and discussions about the sorts of things that can happen. I'm so glad for this. My mother and I never talked about things. Silence was somehow better in those days. I'm so glad that Meri can be honest about Allan and the problems that surround him. And I'm glad that we can talk about difficult things.

I have so much to think about. I have so much to think about what I am willing to do. How much can I give, and how much am I willing to damage and hurt myself to keep Allan happy and let him have what he wants? Am I allowed to think of myself at all? Or am I supposed to give and keep giving no matter what? Can I finally say "No, You are taking just too much"? Can I have a life? Or was my mother right? Am I here for no more than to Serve Others?

Tired now. Time to end the day.

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It has been a beautiful Day in the Neighborhood. Ran errands this morning, partial bath for Bob with his help. He has been more alert and helping himself when he could today. Yet, tomorrow may well be another story. Found me some me time for this Friday, hospice is send a volunteer giving me 3 - 4 hours for myself. Only problem, not sure just what to do with myself, after all it has been 18 months since I have been able to have time for myself.

Have a good night and a better day on the morrow. Michele

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5/19/15 8:08 A

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Thanks to All for your thoughts and prayers. I'm doing OK. This is the first team I found and joined when I became a Spark member, back in the middle ages.....LOL. Someday, maybe I'll actually get this healthy lifestyle thing figured out. emoticon

Hope you all have a blessed day, and remeber....this too shall pass. Things change in a heartbeat.....

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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5/19/15 1:41 A

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Re re, oh I am so sorry about your daughter. you will miss her so. There's little anyone can say to help ,but you know we care and share our friends highs and lows. You must look after yourself ,

We are ok plodding on, my birthday was spread over a few days with different family members, We ate at a Japanese restaurant on my birthday, I was impressed by the care they gave to Maurice He needs frequent visits to the toilets. Mike our son went the first time as there were 4 steps without a handrail, then each time he went afterward a staff member was there to help him up and down the steps. Of course they should have a disabled access place but didn't. The staff took good care of him. Take care of yourselves , Irene

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5/18/15 10:32 P

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Oh ReRe! I am gobstopped by this news! Your dear daughter Dee, and earlier, your Dad! And the poor cat was an omen and a sign.

They are out of suffering now. No more pain, no more misery Let the wretchedness and suffering end!! Let these loved ones be enjoying eternal rest and peace now.

And yes, ReRe, people here love you and care about you. Even though this is a very small team, the feeling are huge. Please check in!

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5/18/15 9:21 P

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ReRe! I'm so glad to see you! Oh? You gained weight? Join the club! I've got some thermonuclear compulsive stress eating going on now, and I've gained real weight. No, I'm not happy about this, but the stress is that bad now.

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Oh Irene...I missed your birthday! It came sailing through this computer, but my attention was elsewhere (more blood on Allan's bedroom floor, what happened now???) I hope it was happy and that you got to celebrate.
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5/18/15 6:38 P

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May God's BLessings be with you Always. emoticon No matter what we are facing, God will see us through.

We have the beginning of a new week and we need to make the best week that we can.
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Michele - Northern Kentucky


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P.S. I know I've gained a bunch. I've been eating like crazy, but that will stop soon and I'll start over, AGAIN!! LOL

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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Hello Everyone,

This is the first time I've had the time and the desire to stop by. It's been a hell of a ride for me these past few months. My daughter, Dee, has gone on to be with the Lord. She left the earthly plane and entered into Paradise on May 6, almost exactly 8 months to the day when my Dad left. He passed on Sept. 5. How quickly my life has changed again. The last of my family went home this afternoon. How quiet my house seems now.

While my son was here, he mentioned that Dee's cat was looking much thinner. I hadn't noticed, but she was very thin. Over the last few days I kept a closer eye on her and realized she wasn't eating, but was still drinking. I took her to the vet this morning. They didn't have an open appointment, but told me I could bring her in between 7 - 8 am, and leave her. The vet would check her out at sometime today. The vet called me around 11 am to tell me the cat, who is 14 years old, is in severe kidney failure. The treatment for her would be expensive, not pleasant for her, and might extend her life a year or two, maybe. So, I've decided to let go and let her go to be with her "mom". I'm going to the vet's at 6pm, to be with her as she crosses the rainbow bridge to be with Dee in Paradise. The irony of this situation is obvious. My daughter suffered with End Stage Renal Disease and was on hemodialysis.....

Praise God! He is walking me through all of this. If not for the love of my Lord, Jesus Christ, I know I would not be able to handle all of this....

I will continue to drop in to see how all of you are doing. God bless each of you....

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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5/16/15 9:02 P

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I'm still checking in to see how everyone is doing. I'm awfully sleepy now, even though it's only 9 PM. I do care about the people here, and I'll check in tomorrow.
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Finally able to get some uninterrupted sleep last night but not able today to run errands. Bob is confused but, not as serve as the last three days. Monday I'll contact Hospice an see about getting a volunteer to stay with him so all errands can be run without fear of him falling while I'm gone. Still can not decide where to put that bed or what furniture needs to go out the door. This week it is a must to start on that project, Now sooner than later.

Have a great weekend! Michele

Michele - Northern Kentucky


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Irene, Hope M enjoyed the family gathering for your Birthday. The cake looked delicious.

Confusion raised its nasty head today. Bob had a partial bath twice today with two changes of clothes. Looks like Laundry is priority for this weekend. Hoping to make it to my hair appointment and grocery shopping along with the Pharmacy, in between those pesky rain drops. But if confusion happens, I won't be able to leave him alone.

Enjoy the weekend and don't forget to do something for yourself!! emoticon

Michele - Northern Kentucky


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5/14/15 10:04 P

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emoticon Irene, hope you've had an emoticon Day! emoticon emoticon

Second quiet day around here, Bob in good spirits, Hospice here today along with his oldest son. Today though he was awake more and hoping he sleeps through the night, No scheduled visits tomorrow just rain. Need to get to the grocery store and stock up for the weekend.

Have a good night and a better day tomorrow. Michele emoticon

Edited by: MICHELE142 at: 5/14/2015 (22:05)
Michele - Northern Kentucky


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I could pay for carers to come to the house but M wouldn't know them , he doesn't even know some of the family now. Our son Mike is a godsend and sounds as much time here as he can. ,I had a hair do booked this morning. I nearly didn't go as M was very confused and having to be steered round to do everything. Mike insisted I went for my hair do, he ran me there to ebe sure I would go .then looked after his dad,
it's my birthday tomorrow. With a family gathering tonight. And another tomorrow I haven't yet told M we are going out. He will only worry and keep asking what time are we going and who will be there. I want him to rest this afternoon them hope he copes ok later , incidental I did enjoy my hairdo and me time. Warm wishes to all who care, Ree

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5/13/15 11:32 P

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Lawrence, do you have theability to hire someone to sit with Allen for your day trip? Where I live there is a local college with nursing students that may be able to find someone to stay with him for the day. You might find someone through a temp agency too.

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Laura .. I find PA out of sink with the rest of the States. Hard to believe that a State wealthier than KY is less attuned to their populaces. Guess that ole expression " fell between the cracks fits". It is my understand that to talk or write to the Ombudsman, there is no criteria to meet. Your talking about the State neglecting Allen's needed care. Someone on your Medical Team needs to inform the Agency of Aging why you are in need of help and why with your condition your health is at risk. Remember the squeaky wheel! Michele

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5/13/15 8:22 P

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I went over to the Office of the Aging - AGAIN - how dumb am I to keep doing the same thing over and over and nothing ever happens or changes!

Most likely we do not qualify for respite care. First there would be this intake. Then we'd wait and eventually somebody would come over to do an assessment. Most likely we'd be turned down. Since Allan can walk and can get dressed we wouldn't qualify as needing care.

As for home delivered lunches, Allan can rummage in the refrigerator and nuke something, and he has me to cook, so we don't qualify.

As for an Ombudsman, we do not qualify for help from such a person either.

I want to go to Ithaca for one day - not overnight even - to see my friends, but there's no way I can possibly get the Office of the Aging to do anything, especially by June 3, which is when the birthday party is. And since it's weekday and my daughter has to work, help from her is out.

So I'm not going anywhere.

I feel ashamed after asking for help. I feel as if I'm being selfish, wanting someone to help me. Asking for help and being told I don't qualify has me feeling like I don't deserve anything and am being unreasonable and thoughtless, wanting someone to help me, instead of accepting that it's my job to be the helper.

This situation has me in a pretty bad head. This is not good mental health.

I'm tired now. Allan went and had himself a hemorrhage, um, was it Monday early morning still in the night, before daybreak? This has happened once before. That time he was picking, and picked open a tiny blood vessel in his skin, and bled so much it looked like a murder scene. He and I stopped the bleeding and I didn't have to take him to the hospital. Or is my memory wrong? There was one time when I packed towels around him and took him to the Emergency Room...my memory isn't working well right now, and that was some time ago.

This time that idiot did NOT yell for me. I was asleep and had no idea that anything was happening. He made a mess, once again it looked like a violent crime scene.

When I woke up and saw the mess I asked him what happened. "Uhh...I dunno..."

"Allan, there's blood all over the place!" "I dunno, I guess I was bleeding maybe..."

I found big wads of toilet paper all soaked with blood in the wastebaskets. I looked on him to see where the wound was, but there simply wasn't much of anything. Yes, he's a compulsive picker, and he gets bloodstains on his shirts, but not hemorrhaging. This was something else. The most I could find was a spot on his little toe. These hemorrhages - and I'm glad they're so rare - are weird, because there's hardly any wound, but so awfully much blood.

I've ordered him to call for me if this happens again, and to ring the bell. I had put a loud bell by his bed quite some time ago and told him to ring the bell when he needs something. Did he ring the bell when he started bleeding? No. He did not. I don't know how to get this man to cooperate...
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5/13/15 7:56 P

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Hello, Michele...does Bob have the power to veto various helpers in your house? Yes, I'd sure agree that it's a problem if all of a sudden somebody can't handle drinking from a bottle of soda.

Are things deteriorating noticeably?

It sounds as if it's been as difficult for you as it's been around here.

I sure hope things are better in Kentucky than here in Pennsylvania.
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5/13/15 5:35 P

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Sorry for my MIA status the post days. Things have been somewhat topsy turvy around here and per usual it has been just me. This will be Hospice's second week here. Over the past three days I have seriously been thinking about what help I can get that Bob would allow in the Home. One begins to worry when a person all of a sudden can not drink from a bottle of soda.

Have a good night and a better day on the morrow! Michele

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5/12/15 11:47 P

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Hello all, I haven't had much time to post lately, but I have been checking on everyone. Hope you all had a nice mother's day. It' late, and I worked a 12 1/2 hour day today so I am tired, and I think I pinched a nerve in my hip yesterday. But I still got my 120 squats in today. Good night all.

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Hello on Sunday, I have read your posts , we all know caregivers need help but there is no easy way of finding it.
I know some of you are struggling . I am fortunate really My husband just sits watching TV and sleeping all day. He eats well and generally is manageable . One problem is he doesn't like me going out of his sight, which makes it hard to have. own time and see friends,
Have a good day and look after yourself as much as possible . Warm wishes to all carers and cared for people . Ree

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This day is just about over and nothing was accomplished today. Literally spent the day watching Bob sleep and being thankful for the time I have left with him. I did get a 4 hour nap in from around 5 to 9 tonight. Hopefully tonight will not be a long night.

emoticon to the Moms everywhere. Hope tomorrow well be emoticon Michele

Michele - Northern Kentucky


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5/9/15 10:05 P

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My daughter Meri and I had Mothers' Day (2/3 of it) today rather than tomorrow. We went to lunch and each had a $5 salad. Meri joked that I'm a Cheap Date, but we both know that this particular salad at this particular restaurant in this particular tiny town in the boonies of Pennsylvania can't be beat.

No vinegar. It's an oil dressing with wonderful garlic. And the lettuce is iceberg. Yes, we know, there are no vitamins in iceberg lettuce, but healthy romaine wouldn't be the same, wouldn't do it.

And then we went to a store in a little town that has strong Amish influence. I was able to walk in barefoot (I'm a serious barefooter) without hassle, and I found hardware things I have not been able to find around here.

Then we went to a lovely woodsy sculpture garden:

www.rhoneymeade-usa.org/

(Photos below the maps.)

Next Saturday we'll do the third third of Mothers' Day (the visit to the store was unplanned). We'll go and sit in the Salt Cave:

www.simplyhealth-calm.com/index.php

My friend gave me a coupon, and I went once. I don't believe in the claims they make, but it is 45 minutes to sit peacefully and know that there's Nothing I Have To Do. Meri hasn't been there yet and wants to try it.

In the midst of all the stuff that comes down and all the problems and stress there are these bits of nice stuff. And I'm grateful for any good thing that happens.

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5/9/15 9:46 P

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Michele, I did read your post about Bob, and that things do not look good. And I do hear you that death happens in Nursing, but then it comes home and you have to deal with it.

I don't know that I have anything useful to say here, other than I know that here I am in Pennsylvania and there you are in Kentucky, and you and Bob are for real, and I do care.

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5/9/15 9:43 P

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Well, yes, Michele...caregivers do need support. I know that intellectually, but emotionally I kneejerk back to when I was a kid and my mother was scolding me about how girls must never be selfish, must never think of ourselves. We exist to serve and to obey.

I struggle with this.

I had this fantasy that some time in June I might be able to go for just one day, just one day to Ithaca NY to see my friends and celebrate the birthday of one of them. Had they planned the birthday for a Saturday or Sunday my daughter would have been able to help out and check in on Allan a couple of times and give him his medicine.

But the birthday celebration is on a Monday when daughter Meri has to work all day and Allan has his Wound Clinic appointment.

The only way I could go is if I could change his appointment and have a respite caregiver come in. But I don't know that I can get a respite caregiver in only one month. Nor do I know if the caregiver can give him his medicine. Nor do I know if I would be entitled to nine hours. I might be able to get five, but that's not enough.

It's nice of Tom Brokaw to acknowledge that caregivers need respite and that we are actually people who actually exist and are actually human and actually have needs ourselves and are not bad selfish people for having needs. But here in my world I'm invisible and invalid and expendable as toilet paper.

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5/9/15 9:31 P

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Hello, Bee...oh wow, I wish I could hand you caregiver assistance on a silver platter! I wish I could get some assistance for myself on a silver platter...

Please keep posting here. There are days when that's the best thing there is. I know it sure helps me to know that Michele and Irene and Pixie are here, and now you're here, too. There isn't always an answer, there isn't often an answer, but we can know we aren't crazy, we aren't wrong, we aren't alone.

Sometimes you can get help from an agency. The quality and availability of agencies varies from place to place. My daughter got better medical care in New Hampshire than here in central Pennsylvania. And a nurse told me it varies from county to county. Here on this side of the county line there's hardly any real help. But a mile away, over the county line, in that county there you can get good services.

How are the services where you live?

Here the services are poor.

Please keep posting and checking in! Even though this support group is very small, it's very very important to me. I read and I care about what happens to each person here, as if you lived next door to me. The little cafe where our real life "support" group met is being sold and will eventually change hands, and I don't know what is going to happen, and besides, that group consisted of one other person, and me, and sometimes another person. This team here is the best support I have.

Let's keep checking up on each other and letting each other know we aren't alone.

I read your post. I read and felt and thought how it would feel to be where you are and the things you deal with. I have no advice or helpful hints today, but I want you to know that I did hear you, and I do care that these things are happening.

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MICHELE142's Photo MICHELE142 SparkPoints: (134,279)
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5/8/15 2:19 P

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Yes, fraid you will find that all Caregivers at one time or another share all that is posted within this thread. Last night on NBC Tom Brokaw ( ? ) shared his journey with Cancer and at the end he mentioned Caregivers and their need for support, assistance, and care for themselves. He stated that Caregivers must take care of themselves before they can take care of others. If families only felt the same way, half of our problem would be taken care of for Us. However, families that really care are in the minority.

For info: Check the Websites of the American Cancer Society, Your Health Insurance, Hospice in your area for Support Groups. Perhaps other Team Members will also have suggestion.

One suggestion " Never give up for assistance, answers and where you can take time for yourself. "

Michele

Michele - Northern Kentucky


Warriors In Pink~~Administrator
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Caregivers Support ~~ Administrator


" Finish each day and be done with it. You have done what you could."
~Ralpd Waldo Emerson



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5/8/15 12:20 P

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WOW I have finally found people that are going through the same thing I am at this point in my life and my past. My husband just found out he has cancer and has 4 chemo treatments he is verbally abusive, bullheaded, stubborn and just I am on disability for mental issues and the doctors don't seem to think there is anything wrong well with my husbands head even though he had closed head injury back in the 80's and has never been the same man I married since he has had that accident I am old and sore and have all kinds of aches and pains and brain spinning all the time I am tired and worn out and one child doesn't give a crap or wont help with a lot that he could the other is trying his best but he is now having a hard time trying to make his life better but at least he calls more than I can say for the other one. If anyone can help me please let me know I need all the info on care givers I can get. My kids told me dad went through all those years with your problems so suck it up. Well I am not him obviously. I read the whole board and I feel and can relate to everything that was said. emoticon

Face my Fears, and learn from them.

Ask for what I need.

If I don't know how to do something learn anyway I can


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5/7/15 9:12 P

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I'm just stopping by to say Goodnight. Too tired now to talk. I'll check in tomorrow.
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