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    • CommentAuthorRona
    • CommentTimeSep 8th 2017
    Care conference yesterday it was a hard one for me. A lot of it was around how to make her more comfortable she is very anxious and afraid again. So looking again at adjusting meds. Also complains of pain in legs and back she walks crooked at times like back out. She walks all the time and they feel she is just tired and exhausted. I don't really buy that she has always been very active. Going to switch from Tylenol to an opioid. Asked maybe we should be looking at what is causing the pain. Asked them to check her bed, hospital bed and have asked before think the buttons can get pushed it can get out of whack maybe that is giving back pain. Also when she walks now she will just stop and slouch down or try and sit down. I have heard others mention this prior to not being able to walk. I am getting fairly regular calls now that she has fallen maybe 4-5 of them over last few weeks.

    Although she has put on weight she is not eating much even things she use to like she says she doesn't like. She will eat sweets, fruit etc. But that is even diminishing. Starting to try and give her boost but really hard to get much of anything into her. Also when i feed her it is like she forgets what to do , open her mouth, close her mouth chew etc.

    The conference really dealt with what we can do to make things better for her from following others journeys here bottom line I think her body is just shutting down. We talked about that and I think they agreed. We reviewed the dnr and what they would and would not do. Also head nurse asked if I had thought of arrangements for the end.

    When she was able she would tell me when the time gets close I am just going to take pills and end it. Also would say to me at times I just want to die. She would not want to live like this it is not living. However she still recognizes me, she still responds to my touch she is still in there. I fear we are getting close to a more rapid slide as her body shuts down. What an awful time. My heart goes out to you lindylou as I see you are just up ahead on this journey and I fear I am not far behind.
    • CommentTimeSep 8th 2017
    It sounds to me ike you are taking everything into consideration to make your wife comfortable, and that's all you can really do. It's been a long haul for you — you must be tired. Yes, it does seem that her body is shutting down, but I'm heartened to read how the care facility is working with you. I hope you will do everything you can to take care of yourself,whatever will give you rest and peace of mind and strength.
    • CommentAuthorLindylou
    • CommentTimeSep 8th 2017
    Rona, if she has fallen as much as you say, she could have injured her back or hip so that they are paining her. And pain can make her anxious and frightened and unhappy. My partner's doctor spoke of the "in-between stage" of walking and not walking. I'll add to that there is another additional stage of not remembering that you cannot walk or at least cannot walk by yourself. A difficult period of time to say the least. Then her doctor talked about the "in between stage" of being able to swallow food and not being able to swallow food. Being on constant guard to prevent falling was hard. Eating and not eating is even harder because instead of hyper-vigilence, with food its dealing with the guilt that tries to convince you that you are not doing enough for your spouse.

    Don't know if you read the Rumi poem call "The Guest House" that I posted a while back. I'll post it again on this page if you wish. I finally had to say "Welcome, Guilt, to my house. Meet my other friends Panic, Fear, Exhaustion, Worry, Joy, Sadness, and Laughter. You are all welcome guests."

    Make your wife as comfortable as possible, Rona. Know she won't be 100% comfortable, but that what you are doing for her is the best that you can do for her. And that has to be enough. Not easy.

    Prayers and thoughts go out to you.
    • CommentAuthorRona
    • CommentTimeSep 8th 2017
    Yes I did read the poem Lindylou. To both you and Mary yes I know I am doing my best and I hope I have given guilt it's appropriate seat in the guest house. She hurt her back about a month ago while walking she started pushing furniture around and that did it. Right now just not sure what is causing it can be as simple as sleeping wrong but trying to address it.

    One interesting thing she has started to say again that she needs to go home and today told me she is dying. These just come out of the blue. Lunch today wouldn't eat then aid made her a pb and j she eat it then some yogurt then some fruit and small glass of boost. So she will eat if she likes it. But others like the egg salad on coissoint today with soup and salad wouldn't touch. She will let me put it in her mouth then just spits it out? Also didn't eat anything but dessert last night. Lindylou yes sounds like we are at that in between stage with eating swallowing and walking.

    Mary thanks for the concern I feel I am taking care of myself I am developing a life outside of Alzheimer's this is what Lisa wanted for me and if the situation were reversed what I would have wanted for her. I no longer go to see her everyday but 3-4 times a week. I also have hired companions who are there for an hour or two most days I am fortunate to be able to do that as it gives me peace of mind and is important for Lisa she does best with one on one. The facility as well are very good they try and give her as much one on one time as they can. Companions coming now more around meal time to help her eat and rather than taking her out may take out for 1/2 hour then just read to her or sit with her to help her be calm. I feel like I am doing everything that I can while still trying to keep my sanity. As you know it is just so hard to watch your spouse slowly deteriorate. I am a strong Person but I also Get emotional I tend to wear my emotions on my sleeve that is why that meeting yesterday was hard on me. I will survive there will be a life after Alzheimer's.
    You are doing a great job Rona. She is very lucky to have you. It is so hard to watch them go downhill. And I remember all too well that "in between" stage where he was really not ambulating safely but could still walk well enough that you couldn't always stop him or supervise him--and there were a lot of falls. It does get easier in a way when they can't walk at all. Not that anybody would wish that on them, but it's just the Alzheimers progression. Sigh.
    • CommentAuthorbobbie
    • CommentTimeSep 15th 2017
    I just got back here . I haven't read the poem, The guest house. My husband is starting his 3rd year in LTC and has just stepped down a notch. He is very unhappy and blames me. I thought guilt had left for awhile, but it was just hiding. The staff tell me is fine when I'm not there and then when I get there, he is so mad. I'm trying not to go so often, I usually go every day or even twice a day. Yours letter makes my guilt lessen as it seems more normal.

    I know I can't bring him home, I can't physically take care of him. But after listening awhile, I get to think "maybe I could", does that sound normal

    He hates the America's got talent t.v. show and I've discovered I like watching it and trying to relearn to crochet. Magic circle is beyond me.
    • CommentAuthorLindylou
    • CommentTimeSep 15th 2017
    Bobbie, Here is the poem I referenced. The line I like best is "meet them at the door laughing"

    The Guest House
    This being human is a guest house.
    Every morning a new arrival.
    A joy, a depression, a meanness,
    some momentary awareness comes
    as an unexpected visitor.
    Welcome and entertain them all!
    Even if they are a crowd of sorrows,
    who violently sweep your house
    empty of its furniture,
    still, treat each guest honorably.
    He may be clearing you out
    for some new delight.
    The dark thought, the shame, the malice.
    meet them at the door laughing and invite them in.
    Be grateful for whatever comes.
    because each has been sent
    as a guide from beyond.
    — Jellaludin Rumi,
    translation by Coleman Barks
    • CommentTimeSep 15th 2017
    From all I have read posted from others, yes it is normal thinking "maybe you can' but the reality is you can't. Yes, some have successfully brought their spouse back home once they are bedridden. It is also not uncommon for them to say one thing to you or react one way when you are there and then be all pleasant when you are not. I think it is Paul (maybe Wolf) whose wife would tell him one thing but reality was it was totally different. There are others that also have experienced the same situations where their spouse is fine when they are not there but totally different with them.

    Glad you are letting go of guilt - stop trying to take it back.

    I agree about TV. There are so many shows I like but don't watch with him home or when he is awake cause he doesn't like them or too complicated for him. BBC America is running the 3 Star Trek series and when he is not home I watch them or will go into the bedroom to watch. He won't go in there to watch TV but it is OK for me!
    • CommentAuthorbobbie
    • CommentTimeSep 15th 2017
    Thanks for reprinting the poem. I know I should shut the door on guilt, and depression. But they just weazle in. This morning he was a bear, later today he was a bunny rabbit. I wish I could just be glad for the good times.

    He keeps asking when I stopped loving him, and why I don't love him anymore. The next time he starts, I'm going to say,"I'll never stop loving you----but I sure don't like you now.".
    • CommentAuthorbhv
    • CommentTimeSep 16th 2017
    Bobbie, I googled the magic circle for crochet. First one had pictures didn't match the instructions. But check this one out! I hadn't heard of it before. Thanks. I think we can follow this one.
    • CommentAuthorbobbie
    • CommentTimeSep 16th 2017
    I am willing to try. I haven't crocheted in so long, mostly knit.

    To care center this morning, and met a new man. Seemed happy to see me and not so angry about being there instead of home. I was there about 2 hours, stayed thru lunch. He thanked me for coming, and said he didn't know what he would do without me. I hope this one stays.
    • CommentAuthorRodstar43
    • CommentTime1 day ago
    Rona, I am behind you in time, how much I do not know. Watching someone you love decline is one of life's toughest test. Especially for a man who wants to fix things. Like you, I feel that I'm tough. I have had to be with my own medical problems for the past 49 years. We both thought it would be me,in this situation. Never over estimate your steely resolve to persevere. Depression can strike when you least expect it. At least I have experienced it. Thanks for sharing.