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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

Irene in Nottinghamshire UK
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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

Michele - Northern Kentucky


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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

Michele - Northern Kentucky


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STITCHINGNAN's Photo STITCHINGNAN Posts: 11,066
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

Irene in Nottinghamshire UK
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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

Michele - Northern Kentucky


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STITCHINGNAN's Photo STITCHINGNAN Posts: 11,066
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

Irene in Nottinghamshire UK
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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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STITCHINGNAN's Photo STITCHINGNAN Posts: 11,066
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

Irene in Nottinghamshire UK
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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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STITCHINGNAN's Photo STITCHINGNAN Posts: 11,066
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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MICHELE142's Photo MICHELE142 SparkPoints: (116,354)
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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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STITCHINGNAN's Photo STITCHINGNAN Posts: 11,066
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

Irene in Nottinghamshire UK
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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

Michele - Northern Kentucky


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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

Michele - Northern Kentucky


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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

Michele - Northern Kentucky


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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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12/15/14 8:57 P

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Oh Irene, it sounds as if Maurice is deteriorating. I've read that people with severe dementia will go back to earlier times and think it is actually that time. There's no point in arguing about it with them.

I can sure understand that you would not feel festive this year. I don't know that Christmas will be all that great for any of us here.

Allan will turn 64 on Christmas day. He always hated being a "Christmas Baby". I will do my best to make it a happy day for him, with the Beatles "When I'm 64" song and food without sodium as well as I can do. He wanted to go to a restaurant, (Red Lobster), but I looked at the nutrition information on the website, and it is so high in sodium, he'd be in awful shape if he ate anything there. Well, with his birthday being Christmas, most places are closed, and we'd have to have family celebration on another day, but there's a really good buffet just off I-80 that's open on Christmas. But too much sodium...so I'll stay home and cook.

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12/15/14 8:47 P

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Are we all depressed here right now? It sure seems as if things are particularly hard now. I really have to deal with the idea of Allan going to the nursing home. Neither one of us is doing all right.

He isn't getting the nursing care he needs. I'm only a play nurse, an imaginary doctor. I can't do it all and can't fix it all. He needs more than I can give.

And I am so depressed, my own health is in bad shape. I'm exhausted with all the care, all the doctor appointments. I'm burned out.

We see the doctor on Thursday. If we don't deal with the nursing home issue, I will have to write the doctor a letter. Neither Allan nor I am are okay any more.

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Around here depression seems to be in the atmosphere. First we are putting up a tree, then we are not. We're sending Christmas Cards then we're not. Not hungry for Dinner but hungry at 3 in the morning. We're buying gifts, now we are not buying gifts Am I livings with a Scrooge or a Grinch?

I know one thing what he doesn't know, " It won't hurt him ". Have a good one. Michele

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12/15/14 2:33 A

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Laura what a thing to happen quite alarming I agree, he's probably forgotten all about it now while you worry for ages.
I can't feel festive at all this year, it doesn't feel like Christmas .
I feel I can't leave M either now.
We had a good day yesterday but by evening he was rambling trying to tell me something .i got a word here and there and tried to make sense of it? He kept on about the town he was born in and left as a child, yet now he wants us to move there. Telling me he won't be happy till he's there and wants the very house he lived in too. No chance , I hope he's forgotten it today . I can't make plans just not even day by day but hour by hour. Irene

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12/14/14 1:36 P

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What shall I do with this man??!! What shall I do?? What shall I do??

I came home from the supermarket and came upstairs. There he was, of all places, in the bathroom, fully dressed, one foot in, one foot out of the tub, with the shelves next to the tub knocked over and stuff all over the place.

He said, "I've been standing here half an hour."

What happened? He couldn't tell me. Made some noise about slipping on the bath mat, but the bathmat was not on the floor. It was folded in half and laid across the edge of the tub. What was he doing stepping into the bathtub fully dressed anyway?? If he hadn't lost his balance and steadied himself by pulling the shelving into the tub, would he have turned the water on? Would I have come home to find water all over the place and him all wet and cold in his clothes??

Why didn't he push his alarm button? He was wearing it, I am glad to say, but if he doesn't use it, what good is it?

Now I'm anxious about going out. Is it time for me to stay home all the time? And must I stay upstairs in his room with him? He can have a weird accident as easily with me downstairs in the kitchen as out at the store.

We see the doctor this week. Allan doesn't take this seriously, but I do. He says he's fine, but I don't think so.
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12/14/14 3:02 A

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I have booked an eye test for M .usually we go to a busy place But I did inverted a small local place run by an older couple, very quiet and calm, I went i to talk to them. They understand Alzeimers patients need calmness, I was impressed by them so am taking M there next week .
He needs calmness and quiet talk now not a frantic busy atmosphere, Have a good day. Irene

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12/11/14 11:52 A

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Sounds like M is seeing what they call floaters, which are usually black tiny spots that just float out of the blue. Both Bob and I had cataracts removed from both eyes years ago.
Hope things turn out for M. Have that quiet day you are looking for! Michele

Edited by: MICHELE142 at: 12/11/2014 (11:52)
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12/11/14 1:08 A

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That was a surprise Laura re Alan accepting the facts as they are,.i hope it leads to something positive, I got Maurice to the doctor yesterday, he examined his eye and said right away wow there's a strong looking cataract on one side , that will be affecting Ms sight. He suggested going to an eye specialist as they have the capacity to see beyond the cataract to check behind it. Now have to arrange that,
Maurice can see insects or something in the air now they float around he says ,I suspect they are in his eye not in the air.
I woke this morning to the sounds of him trying to open an unused door , he thought it was the bathroom door. I guided him to the bathroom , he got back in bed afterwards, I was awake then so got up, I love a quiet hour in a morning , I need a quiet hour. ..so what will today bring ! Irenr

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12/10/14 9:45 P

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Michele - Northern Kentucky


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12/10/14 4:10 P

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Some good news for a change. We were on the way to the doctor (where else would we be going?) and Allan said, "Uh, my health is pretty bad, isn't it..."

I said yes, you do have really serious health problems.

"I could drop dead, couldn't I?"

I said, "If you were lucky, you'd drop dead. More likely you'll just go on and on, lingering and getting worse and worse."

And then he asked me about the nursing home. He brought the subject up and opened the door for me to reassure him I wouldn't be abandoning him in a snake pit, but that he'd be getting the care he needs. I reassured him that I'd be close by and that I'd still be in the position to advocate for him, as I've been doing since 1993.

So at least for today he was getting used to the idea instead of threatening to run away. And he brought the subject up, not me or a doctor.

Something good for a change.
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12/10/14 2:07 P

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Good Luck Irene!

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12/10/14 2:50 A

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Things just happen do they and plans go awry. I have to ring medical centre as soon as they are open , M told me he has a blank patch in ine eye, it maybe nothing ,it may be a clot I am thinking. I don't know so have to seek medical advice now,, will tell you later, Irene

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12/9/14 8:47 A

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Me Time ..... from now until the first of the year for me will be a problem even squeezing that one in. Taxes are coming up, the budget I had worked on is out dated as medical Co-pays have increased as well as food coming from the drought areas. The only good happenings are the low price of gas and hoping that all health insurance payments will go back to day one at the 1st of the year. Yet, we still do not know what goodies the New Years Baby has in mind for us all. Have a good day and a better dy on the morrow. Michele

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12/9/14 7:47 A

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I'm not trapped in the house yet. I can still go out for a good period of time. Not enough time to be away all day visiting my friends in NY State, but enough that I can go to my book clubs and go shopping.

What takes a lot of time and ties me down is taking Allan to all these doctor appointments. We go to the doctor over and over. Going to the doctor is the main thing we do. If he were in the nursing home he'd be having that medical care, or so I believe.

Today is one of my book clubs. The weather is cold and miserable, but I see cars going by. The roads are good enough, so I am going to go out.

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12/9/14 7:25 A

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I agree, Michele...the older I get the harder it is for me to deal with extremes of temperature. I've never liked cold, but when I was younger I used to do better at going out in it.

When I was a kid I loved summer. Now I find summer as hard to deal with as winter. It's that humid heat that gets me. Dry heat is pleasant, but when it's hot and muggy I get so enervated and drained.

I've had to learn to not punish myself in the summer when I become unable to do things I can do in spring or fall. This past year I finally got air conditioning for myself. Allan has an air conditioner in his room, but I did not, nor did I have anything downstairs that would serve the kitchen and front room. It made all the difference!

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12/9/14 2:59 A

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Yesterday I did get M to stay home telling him how cold it was outdoors, he was ok for an hour which gave me little break. Yes I have someone who will look after him but not just any time, it has to be planned , I am using this to have my hair cut and styled on Thursday morning.
I hope you all find some Me time ., Irene

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12/8/14 10:22 P

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I do believe that below certain temps and also above certain temps there are certain classes of people should stay indoors. For Health and Safety! Yet if we are in that class of people we do have to traverse out! You could look further into why M does not want you to leave him alone. I thought you had someone that could give you a few hours away from home. ........ I have heard various speakers talk on how some people Will say " Don't go" or "I don't want to be alone" for a reason their not aware of at the time.

Hope we all have a warmer and drier week than the last. Michele

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12/8/14 8:58 P

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Oh Irene! I hope you do get to your craft group! We do need time out, and time with people who do not have dementia. Yes, we do love our loved ones. Needing time out is not a sign of lack of love!

Tomorrow morning is one of my two book clubs. I do so want to see the people!

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12/8/14 2:56 A

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Hi on Monday I hope to get to craft group this afternoon, it's getting difficult to go anywhere now as Maurice, tells me he doesn't what to be left alone . I can ignore that or take him with me which is what he wants , he walks slowly and it's cold now. We don't have a car , the group isn't far it's in a local coffee shop. Buy I hope he choses to stay home and watch TV , I won't stay long but need to pop in some time before Chriistmas, they meet on Monday afternoons.
Enjoy your week ., Irene

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12/7/14 7:29 A

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Thanks, Michele...I'll try that again. I did that before, and while the computer did recognize the phone, it just messed the pictures up in the phone. Nothing would come into the computer. But I'll try again.

I also have a little digital camera that I've had for some time. I haven't used it in a long time. It's too complicated. I forget if the software is on this computer or was on the old computer that broke down.

I miss my old original simple camera. It worked so well and got such really good pictures. I have pictures on old floppy disks, but all that is obsolete now.

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12/6/14 9:16 P

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Laura, your phone should have a cable that you use to charge your phone. Take that cable ( apart if you have to ) put one end into the phone and open up where you have your pictures. take the other end of the cable an put it into a USB port. Open up where you keep you pictures on your PC and try to download them using that software's procedure. With some computers you may have to click on your start button for your computer and click on My Computer when that opens it should show that it has recognized your cell phone. Either way combine the two and your pictures should be loaded into your software for pictures. Works with mine! Michele

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12/6/14 7:48 P

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We got your rain, Michele...it's been a dreary wet chilly day. I've had a particularly unhappy episode of depression, very heavy depression today, but now it's evening and I'm moving out of it for the most part. Caregiving is depressing and onerous these days, but I know to be patient because things eventually change.

Irene, I was delighted with the picture of Maurice with his toy dog. Unfortunately I am camera-challenged. I used to have a very simple digital camera and a very simple computer, and I could take wonderful pictures, put them on the computer and then put them places. Then the camera died, just died. It was an early digital camera, very simple. Now the technology is too much for me. I have a cellphone with a camera, but I don't have a clue how to get the pictures out of the phone and into the computer and from there into some other thing.

I want to take pictures of Allan with his "stuffed toy", who happens to be our grey cat who loves to snuggle up against him. We have our time together every evening in front of Allan's TV set (an old-fashioned cathode ray tube Real TV, not one of these infuriating electronic things that is really a computer in disguise) and the DVD player, watching old episodes of that 60's gothic soap opera Dark Shadows. I was working at that time and totally missed out on Dark Shadows when it was happening on TV. I'm in the chair, and Allan is on his bed, and Cuddles the grey cat is snuggled in the crook of his arm.

I'm a Cat Person. Allan is a Dog Person. He learned to love my cats, and I got into dogs (to a great extent by working in a boarding kennel when we were living in New York State). We had a wonderful dog, The Best Dog In The World (like other people who have The Best Dog In The World), but now our dear beloved Susie Dawg is gone. We both miss Susie Dawg terribly. Cuddles is busy filling in for Susie, but of course she isn't a dog. Still she has won her Daddy's heart.

If I don't forget, I'll take my phone upstairs and see if I can get a picture. Then I'll have to figure out what on earth to do with it. And figure out how to put pictures on my Spark Page. I don't have a clue. And I don't have any profile pictures of any sort for Spark Page or Facebook or anywhere.

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12/6/14 4:38 P

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Afternoon, Its nice and cold, rain judt left and moving on to PA, Supposedly we have no more rain in the forecast, .......... Robert had his chemo yesterday, and with a higher dose so he has slept the last 36 hours, Eaten lunch and back to sleep, so my day is actually my day. Now all I need to do is get it together. Have a great Saturday and a better Sunday. Michele

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12/6/14 1:09 A

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Hi early Saturday , I heard M get up at 4 am and assumed bathroom, later went looking and he was wandering round looking vague, so guided him back to bed. He soon fell asleep and still is but I was wide awake so got up.
I can't leave him for long now, yesterday I was helping at a sales table at the school Christmas fair. M not at all happy about being left but I went, I enjoyed my time there, Megan our grand daughter was at the fair, she offered to go and stay with him till I got back,
I bought him a soft cuddly toy dog, he loves dogs but we can't have a real one, he loved the toy one and calls it Alfie . It's on the back of his chair and he talks to it, so I hope Alfie will keep him company when I go out,
Have a good weekend, Irene

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12/5/14 10:36 P

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Evening, on this rainy, cold and foggy night. Hope all are doing well.
Have a great weekend, stay Warm and Dry. Michele

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12/4/14 12:01 P

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Irene your days with M, even with Al beginning around, M does seem to cooperate with you. Then between Laura and I have the stubborn ones to contend with. I just spent 15 - 20 minutes explaining to Robert why his doctor order Physical Therapy for him. Which went in one ear and out the other. Which I ended up telling him that I would do or help him with anything I felt he could not do and that his doctor is only trying to help me with you. If you remember he told you that if I where not around Nursing Home Placement would be your only choice. So what does he say, "Put this cup in the kitchen for me and get me my Coke out of the Frig."
Realizing what we had talked about, he got the Coke himself. Today, will not be a D-Day for me! Hope everyone has a better Day! Michele

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12/4/14 2:04 A

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Hello onThursday Stubborn is the word for Alan I think but who will look after him when you are not around ? I don't know what the answer is but I am so sorry you are having such a hard time.
Mental issues make predictions harder, with Alzheimers there are 7 stages. No one tells me things but iam in groups on line and a lot of helpful stuff is published .
I reckon M is on stage 5 now. It involves sleeping a lot and needing more reminders on routine things , I had to just remind him he wears eye glasses so put them in, oh ? Yes,
I have to guide him round to do regular things now , one thing in essential , a sense of humour. He still has one and laughs at himself, it's laugh or cry at times.
I hope to get out and post mail this morning while me weekly cleaner is here he likes her and she's hapoy to keep an eye on him while she's here, I shall give her something extra at Christmas in her pay packet . Irene

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12/3/14 11:13 P

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That seems to be the story of many and in every State of the Union. Tomorrow we have Physical Therapy coming to work with Robert on strength and core balance. The therapist is one we have had the last 3 years. Bt the same thing will happen once she discharges him from the service. Its recliner time and get me and I want.

What would you want from In Home Agencies?

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12/3/14 7:50 P

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I had my flu shot. Neverthe less I did get the flu, but because I'd had the shot, it was a milder version of the flu. But still no fun.

I'm depressed today. I took Allan to the cardiologist, actually the Physician's Assistant, and the subject of the nursing home came up. Allan freaked out and I was not able to fix it. I'm too burned out myself. I couldn't fix it. Allan had a mini-meltdown. NO! He won't go! And that's that!

The PA suggested that I see if I can find agencies that can help. I've been taking care of Allan since summer of 1993, and we've jumped through hoops with agencies and maybe we get a bandaid which doesn't help anything. And Allan has been in and out of Mental Health so often they should put a revolving door on the place, but nothing helpful ever came out of it.

So it's just the same ol' same ol'. See the doctor, but nothing happens. I don't like it when doctors suggest calling agencies. It tells me the doctors really don't know or understand what is going on, and don't get it that some people can get some help from these agencies, but in the case of people like Allan, there really isn't anything available that helps.

I'm very tired now, and I want the day to end.

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12/3/14 4:39 P

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I took a Flu Shot a week ago last Monday and since this Monday I feel and act like I have the Flu. Robert would not go for his Chemo this morning as I could not go. Had made arrangements for his oldest Son to take him but, NO he would not go! So he is rescheduled for this Friday, just hope I feel better by then. He kept telling me that he knows he should go but, there would be no one here with me. Nice that he feels that way......He seems to be enjoying his 3 hour Nap!

Enjoy the rest of the week, Stay Warm and Safe! Michele

Michele - Northern Kentucky


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12/2/14 2:17 A

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Murphy is a world traveller he visits here sometime.
Yesterday was ok but I did notice how M had forgotten things like family names and he asked was our son married .
Daughter in law visited and she can look after him on two dates this month so I can go out to events.
I did go to book club last night.M assured me he was fine with that, but when I got near home I saw torchlight and realized he was out looking for me . Though he told mr he just needed to stitch his legs and get some air that's whyhe was out. Yeah Right! So it makes it difficult now for me to leave him for long.
Do what ever has to be done, nothing stays the same for ever and we don't last for ever, Irene

Edited by: STITCHINGNAN at: 12/2/2014 (02:20)
Irene in Nottinghamshire UK
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12/1/14 10:07 P

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Laura, your right, that type of dressing doesn't fall off by its self. That would be similar to a leg cast falling off by its self. So glad that you like Center Crest. When you visited did you ask them if they have a waiting list and how long it was? That would give you an idea of their available bed turn over.

As far as Murphy is concerned, I need to get it together and make things uncomfortable for Murphy to come around. In other words I need together!

Have a better day tomorrow. Michele

Michele - Northern Kentucky


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12/1/14 9:41 P

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Well, Michele...so Murphy is visiting you this week I had Murphy pestering me a week or two ago. One thing after another went wrong.

Yeah, Allan did pull his bandage off, and then said to me, "Uh, I dunno, maybe it fell off..."

Fell off, yeah sure...he had to pull it off to get that tubigrip over his ankles. As a nurse, did you have to put layers of tubigrip over patients' legs, especially patients whose legs were painful? Tubigrip doesn't just drop off...not that stuff.

I did go back to Centre Crest today to ask questions. Once again I came away feeling better. Once again I saw a clean, bright space without that awful sick smell I used to smell when I was volunteering with the pet therapy program in Ithaca NY. Seeing Centre Crest helped me to feel better today.

So Murphy came to you and smacked you right in the face. Murphy likes to hang around here, too.

Yes, Allan needs to be there to get his health needs met. The reality is that no matter how much I love Allan, I can't fix it. I'm not Superman. I'm not Wonder Woman. The vascular dementia (and we don't know for sure yet if it's early Alzheimer's as well) is the lesser of the problems. Allan's health is AWFUL, and he needs genuine professional care, not an overworked burned out play nurse who can't cope with it all.

So far I've been focusing on the dementia (which has him acting like a 5-ear-old going on 4) and have not looked at the horrible health problems.

Maybe this is because we were looking at my grandmother's awful dementia and not seeing any real health problems. Grandma's brains were shot, but she was still chugging along. Somehow I got it in my head that you go to the nursing home because you went senile, not because of horrible health problems.

But Allan's health is dreadful, and his bad habits are making things worse. I do not have the authority to persuade him to do things he needs to do. But I've noticed that a professional can persuade him to do physical therapy where I can't, and other such things. I think the people at Centre Crest could get him exercising and walking (and doing cognitive therapy, I hope, to get his brains working better).

Here he comes, he's coming down to go out on the porch and have a smoke. Patience. Things will change. Time will pass, and things will get done...

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12/1/14 8:52 P

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Spent my Thanksgiving with none other the Murphy from "Murphy's Law". I am thankful for the last four days to be over. It was like turning a corner and walking smack into a brick wall. So now this week is getting out of that brick wall.

Have a great week!

Michele - Northern Kentucky


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12/1/14 9:20 A

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What a way to start the day. What a way to start the month.
emoticon
I was all set to go to Jazzercise, and then I discovered that Allan had taken his bandages off his leg, as well as the tubigrip on both legs.

I had to spend time cleaning his legs up and bandaging him again. I hope this was a one-off incident. I hope I'm not going to find him pulling his bandages off over and over.

And now it's too late for Jazzercise.

Right now I feel depressed and weepy. I can't take care of this man!

This day and week have gotten off to a bad start. Luckily I have a therapist appointment at 11:00 today. I'm going to try to restore my mood



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12/1/14 2:46 A

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Incredible it's December , will it be much different for you and yours?
I am seeing my daughter in law Maggie today, hoping to book a few sitters so I can have my hair done and do a few festive things,
Have a good day, Irene

Irene in Nottinghamshire UK
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11/30/14 3:36 A

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I am a nap person too. Never long but just a few minutes helps .
I know what's meant by what is a normal person like. Yesterday my son came to see us He did grocery shopping en route. Her showed me what he had bought then put it all away. He then took the trash out while I made us coffee. Later we had lunch out. It was good to see people studying menus and ordering for themselves. I choose Maurices meal before my own?
A quiet day today is needed, enjoy yours. Irene

Irene in Nottinghamshire UK
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11/29/14 8:10 P

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Michele, I take naps. This is something I've done for years and years. But my naps tend to be short, like ten minutes to half an hour. It's rare that I sleep longer, and when I do I feel groggy when I get up, too.

I'd heard about the "caffeine nap". I do believe that there was an article about this on Spark People just the other day. I'd heard about this before, and what I do is have my "Adderall nap".

I take Adderall for my ADD/ADHD. When I heard about the "caffeine nap" I decided to try an "Adderall nap".

I take my Adderall and then lie down for my nap. When I get up some 15-30 minutes later the Adderall has had time to kick in. Yesterday I had my Adderall and a very small cup of instant coffee and went straight up for my nap. When I woke up some 20 minutes later I was alert. I meant to do that again today, but I just went up and had my Adderall nap. Tomorrow I'll have a four ounce cup of instant coffee, too. That combination seems to work well for me.

I don't need a long nap. The shortest nap I've had was three minutes. What is essential for me is that I get out of that waking consciousness. It's like rebooting a computer that's getting all jammed up. Turn off, then right back on again. I'm rebooting my brain. I don't have to be out long, I just have to get OUT of waking consciousness. Just shut things down and then let things start up again.

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11/29/14 7:54 P

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Today I went over to my daughter's and son-in-law's house. Meri and I wanted to play Backgammon. Pete was there rummaging around, doing some chores and getting some things together.

It was so good to be around Adults Who Can Talk And Behave Like Adults. I'm so used to Allan now that it's totally normal for me to be around someone who is helpless and needy and unable to do much of anything. I'm used to the repetitive questions and simple childish stuff. I'm used to a man who can't take care of himself. I felt amazed at Pete who is a Normal Adult. A man who can actually do something. A man who actually has interests and does things and holds a job and has a life. A man who can actually have a conversation with an adult woman.

I'm so used to Allan I think all his stuff is normal. Seeing how other people live is important for me. It tells me just how badly off we are. I'm so used to being a burned-out caregiver I forget that there are other ways to live.

And it means that Allan and I do need help. How we live is NOT okay.

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11/29/14 7:44 P

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After running errands this morning i got a 3 hour nap in, then once up I felt groggy for a while.
Now the day is progressing as a normal day around here. Hope everyone has a great week! Michele

Michele - Northern Kentucky


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11/29/14 2:21 A

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Hi on Satuday
Today my son Mike is visiting with his daughter and a granddaughter, ! Little Jess loves magic grandad (Maurice) her name for him and he dotes on her, so it should be a good day today, we usually go out for lunch, I enjoy some conversation so am looking forward to that,
Oh it seems nothing unusual showed in M s blood and water samples, I haven't seen the doctor but she had said earlier it looks like his tiredness and lack of energy is part of the big A progression,. Enjoy your weekend , Irene

Irene in Nottinghamshire UK
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11/27/14 5:14 P

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We both were tired yesterday, so once we got to sleep last night we woke up round today.
Actually I woke up at 2 this afternoon. Shortly afterwards his oldest son arrived with Thanksgiving for us. His wife put together a mean dinner for two. One plate will provide for two thus leaving another meal for tomorrow, Yep nice day! Enjoy the harvest bounty and the gatherings with friend and family. Happy thanksgiving!

Edited by: MICHELE142 at: 11/27/2014 (17:15)
Michele - Northern Kentucky


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11/27/14 5:07 P

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Today was pleasant. We had a nice holiday and good food. Nothing much to report. No problem with weather, no problem with illnesses or crises. I'm looking forward to a quiet evening and early bed.

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11/27/14 2:49 A

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I can share in the I don't need syndrome , they do not see themselves as we do. It sounds selfish but if one of us had to have these problems I am glad it's him not me. He couldn't look after me the way I look after him. Few men could ,
Yes he loves tv and I am afraid i use it at times to keep him occupied, but he is getting tv and real life confused often now.
I was going to the local store yesterday, he told me not to go near the edges and be Careful? Of what? I looked at tv and it was high cliffs and stormy seas, I assured him I would take care , we live in the middle of the country.! I did my bit of shopping , as I came back I found him just setting out to look for me . I hadn't been very long , making it hard now to get out even locally,
Enjoy your thanks giving today and everyday, Irene

Irene in Nottinghamshire UK
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11/27/14 12:37 A

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Robert's visit went well this afternoon, with his PCP. Infact he raised more question then the doctor did. So, he is willing to have physical therapy and someone to help him with a bath. Several times a week. That will help me just a little. What I need is someone to help with down sizing this place. Guess that will have to be a big wish before I would get that help. The I would spend all my time doing the downsizing before my help would come in. Makes sense Huh!!!

Have a great thursday. Michele

Michele - Northern Kentucky


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11/26/14 7:21 P

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Gee whiz, Michele, once again, are we sharing the same man?

"No, I don't need, etc..."

Yup, there it is. No, I don't need it. Laura does fine, better than any nurse.

And the same, he does not see that he needs assistance or that it will make a difference...same as you are reporting. And as long as he has Patient Rights he can say No and say that I should continue doing what I am doing.

I'm so tired now...

We did have snow today, but it didn't amount to all that much. Tomorrow we're going over to my daughter's house for Thanksgiving, which will also be a belated birthday for her. No turkey for us. It will be pot roast.
emoticon emoticon emoticon

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11/26/14 1:23 P

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Physical Therapy popped in this morning to open up his case for strength training and balance and to inquire about other services he made need. So that means "NO I don1t need, etc.......
he still has his appointment this afternoon with his PCP. I'm drastically in need of SLEEP! He does not see that he needs assistances or that it will make a difference because the damage is already done.

Have a great day. Be Safe! Michele

Michele - Northern Kentucky


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11/26/14 6:59 A

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When my grandmother had such bad dementia my dad didn't get her a TV to entertain her. He said TV frightened her because she didn't know what was going on. It wouldn't keep her occupied or calm, it would only terrify her and make things worse.

It sounds like Maurice gets reality and make-believe confused now, but can he still benefit from TV? Can it keep him occupied?

Our little town was featured on a TV show not too long ago. There's a show in which they come in and make over a restaurant. We have an Italian restaurant - actually we have eight Italian restaurants in a town with a population of a little over 6,000 people, maybe 6,500 if you count the neighborhoods outside the borough limits. There's this one restaurant that was struggling, and the brother of the owner opened a competing restaurant right across the street. There was a family feud going on, and it made for some drama. I haven't taken Allan to the restaurant in a long, long time. It's hard to take him places now, and what with the sodium restriction there really isn't much in the way of restaurant food he can eat.

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11/26/14 2:18 A

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If anyone deserves a rant you do Laura, you must wear a halo to put up with all that,
I have a calm life compared with you,
M is getting real life and tv confused now. He started pulling at his sweat shirt last night and asked me to help take it off,
why are you hot?
No but I need to get hanged before they come here,
Who!
Those people , and pointed at tv people who were doing up a house for someone.
I told him i would like a make over but they are not coming here . and you look fine as you are,
Oh alright, .
Have a calm day .irene .


Irene in Nottinghamshire UK
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11/25/14 8:02 P

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Michele, are we caring for the same man?? Is there just one man and we're all passing him around and sharing him??

Allan is short of breath, and his COPD is really awful. He hacks and spews and spits into the wastebasket (I don't want to look in there - it's gross) and he has trouble talking, he sounds awful. He walks so slowly and has trouble going up and down the stairs.

(No! No! I do NOT want to move him downstairs into my studio! He took over my room where I had my records and record player - now the record player is in storage, unused. His his drums are in my front room where I trip over them if I want to go in and look out the window. They used to be downstairs in my parlor, making that room unavailable to me. He makes a mess in the kitchen. He does smoke his stinkin' cigarettes out on the back porch, but he's left cigarette burns in the carpet I have out there, I'm glad it was a cheap rug from a discount house. I bought this house because I intended to live here BY MYSELF - we aren't married - but now he's just taken over and I feel like a live-in housekeeper in someone else's house. No! I do not want to have to give up my studio space next. And then what? When he could still drive he took over my truck and trashed it with his nasty cigarettes, stinking it up and burning holes in the car seats. No! No! The patient has Patient Rights. Does the Caregiver have any rights at all? Or will I be punished for Elder Neglect if I don't just lie down like a doormat?)

Wow...that was some rant, wasn't it...

Yeah, I'm stressed. This man is really sick, and I can't manage it all by myself. Diabetes, sodium intolerance, chronic pain, venous insufficiency, not only Leiden factor V but other clotting factors at the same time, and a list of 29 different ailments...we have a really sick man here and a burned out Play Nurse who isn't up to this much care.

And never mind that his dementia leaves him a sweet but uncooperative five-year-old. Five going on four.

So it sounds as if Robert will only listen to the doctor and will only comply with the doctor, and you need the doctor to explain just what caregiving is doing to you.

Allan claims that I'm doing fine. He says I'm better than any nurse. And it's true that I give *loving* care that no nurse can give. But I can't hold up these health problems! Allan says that I'm doing just fine, just fine, and he's satisfied with my care and doesn't need anything more from anyone else - and no nurses sent here to the house! He doesn't want any stinkin' nurses up in here, Laura does better than they do, and we don't want them here! So he says. (And yes, the home nurses didn't solve any problems but merely added to the stress.) And indeed having someone come in here once a week or even once a day doesn't solve the problem. And having a physical therapist come in here once or twice a week doesn't fix things.

Allan is non-compliant here at home. He does better when he's in a facility of some sort. A hospital or physical therapy place of some sort can get him to do what he needs to do. As my friend (whose husband had cancer) said, "They have Authority that we don't."

Rant! Rant! Rant! Tomorrow we have (a) a threat of bad weather, a big snow storm to clog up the roads and make travel difficult, and (b) an appointment at the Wound Clinic. I did get my car fixed, and I have new all-weather tires (is it "tyres" in England? I do love the Queen's English, I have to confess that I'm an Anglophile) and even if I don't get to Jazzercise I will get Allan to his Wound Clinic appointment.

Tired now! My day is over! Where's that little sleeping emoticon?
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