Medical Forum / Diseases and Disorders / Alzheimer's / March 2006
hard times
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meg - 03 Mar 2006 01:41 GMT My poor Mom is really having a tough time and it's so hard to see her so unhappy. Just a year ago my Mom was living independently. Last March following a string of events my Mom couldn't be left alone anymore. We stayed with her in her house until we were able to move her to assisted living last May. We had to move her from assisted living to memory care in November because she got lost 3 different times from assisted living. She has hated memory care from the moment we moved her because all of the other residents in her wing are so much more disabled than she. The food is awful, and some of the basic housekeeping chores she should be receiving fall through the cracks because she is so independent and doesn't need assistance with dressing, bathing, or managing her incontinence (we're working on these issues with administration). Unfortunately she doesn't have the skills to understand or have compasion for her fellow residents and they just frustrate her to no end. She was furious the other day because a visitor wouldn't let her exit the front door (rightly so). "I'm being held captive." she said and she is, even if it's for her own safety. From her perspective that must be very scary.
Until last month my family was wondering if we had done the right thing by moving her to such a restrictive setting. But two weeks ago when she had a sinus infection and her dementia worsened the staff responded wonderfully, in a way I knew assisted living facilities wouldn't be able to. During this most recent illness she started to request to "go home". When I tell her she has to stay where she is for a while she sounds so defeated.
She has always been appreciative of her kids for helping her, but I think she's beginning to think we're abondoning her and she's beginning to get angry at us. She continues to have an awareness of her diminishing skills and misses being able to cook and clean. She's very aware that she's lost her ability read novels and knit, two activities that always provided comfort for her. She can still read the newspaper and enjoys that. What a way to spend your final years, in such emotional torment, and we prolong it with all sorts of drugs.
My only hope is that spring is comming and the grounds of the memory care facility are wonderful with walking paths and lots of opportunities to garden, one of her favorite activities. I hope it helps my Mother feel better.
Lee - 03 Mar 2006 03:40 GMT one suggestion... why tell her that she has to stay where she is? Maybe you can find an approach that she can perceive as positive... i.e. yes, that will be wonderful - when you're all better.... and then distract. YOU know she's not going to get 'all better' ... but IMO there is nothing at all to be gained by telling her that ... if talking about going home and focussing on making plans for what she's going to do when... brings her comfort, I'd say go for it
> My poor Mom is really having a tough time and it's so hard to see her > so unhappy. Just a year ago my Mom was living independently. Last [quoted text clipped - 36 lines] > opportunities to garden, one of her favorite activities. I hope it > helps my Mother feel better. meg - 03 Mar 2006 04:14 GMT For the most part, my mother's is not yet at the stage where we can "fool" her with untruths. Also, although her dementia became much worse when she had a sinus infection and she started to ask to go home, most of the time she is oriented to time and place and knows that her home is sold. During the times when her dementia is worse, It seems better to be vague i.e. "You have stay for now.". To pacify her, I had been telling her we'd start looking for another place. At first the prospect of moving again was enough of a deterrent for her. But now she is starting to perseverate on that idea. My mother can be like a dog with a bone when it comes to highly emotionally charged thoughts, she is not really distractable. It didn't take to long for the aids in her memory care unit to realize that. The more you try to distract her from what's on her mind, the more frustrated and perseverative she becomes. it's better to sympathize with her. That is what is so horrifying about this disease for her. She is maintaining an awareness of her loss of independence and skills. She's not forgeting what she used to be like. But she is losing the ability to cope with the loses.
> one suggestion... why tell her that she has to stay where she is? Maybe you > can find an approach that she can perceive as positive... i.e. yes, that [quoted text clipped - 44 lines] > > opportunities to garden, one of her favorite activities. I hope it > > helps my Mother feel better. tvengineering - 03 Mar 2006 12:35 GMT my moms doctors and nurses told us to be truthful. This is your new home... etc....
if you make statements like "when you get well, you can go home", after a while the AD patient will get pissed off at the doctors for not being able to diagose the fact that they are well. It makes the Dr. or nurses out to be bad guys.
be honest. After all, it is the best policy.
> For the most part, my mother's is not yet at the stage where we can > "fool" her with untruths. Also, although her dementia became much [quoted text clipped - 67 lines] >> > opportunities to garden, one of her favorite activities. I hope it >> > helps my Mother feel better. Tumbleweed - 03 Mar 2006 16:19 GMT > my moms doctors and nurses told us to be truthful. This is your new > home... etc.... > > if you make statements like "when you get well, you can go home", after a > while the AD patient will get pissed off at the doctors for not being able > to diagose the fact that they are well. No they wont, because they'll forget you ever said that before. Thats the *point* and until you get that telling them the truth will be most unlikely to be the right thing to do.
> It makes the Dr. or nurses out to be bad guys. In my *direct* experieince, the Drs and Nurses were the 'bad guys' when they told my dad the truth, that he was in a ward because he couldnt look after himself and it was too much of a strain on his wife. He had to be forcibly restrained and sedated.
> be honest. After all, it is the best policy. I'd like to see you try that with my father when he was first placed in a home. After you'd had your black eye treated a few times, you'd probably try saying something else other than 'you are in a home because you cant look after yourself' because to him, that simply wasnt true, of course he could. AFAICS from others here, its exactly the same with their LOs.
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Dennis P. Harris - 04 Mar 2006 04:35 GMT > if you make statements like "when you get well, you can go home", after a > while the AD patient will get pissed off at the doctors for not being able > to diagose the fact that they are well. It makes the Dr. or nurses out to > be bad guys. once you've had more experience with this you will tell the folks that told you that this was best that they are wrong, wrong, wrong. it's best to redirect attention, and if that's not possible, to simply agree with them if agreement is not harmful. they may not remember what they were upset about, but they will connect the upset with folks who are telling them things that they "know" are "wrong".
> be honest. After all, it is the best policy. no, loving deception is often the best policy. it does no good, for instance, to tell them in advance about appointments in the early stages of the disease because they will obsess about it ("why aren't we going to my doctor appointment now?" over and over, for example). it's best to "remind" them of it just as it's time to get ready to go.
if they are having delusions, or think their son is their long dead husband, it does no good to try to convince them otherwise. in fact it can be quite harmful to get them upset by doing so. it's better to simply agree, divert their attention (or get them some meds to get delusions under control).
it's not kindness to get them upset for no real reason. far better to use loving deception to calm them down.
Evelyn Ruut - 03 Mar 2006 13:19 GMT > My poor Mom is really having a tough time and it's so hard to see her > so unhappy. Just a year ago my Mom was living independently. Last [quoted text clipped - 36 lines] > opportunities to garden, one of her favorite activities. I hope it > helps my Mother feel better. Hi Meg,
I have always said that these earlier stages are the worst, when the person is still able to care for themself a bit, but certainly not able to care for themself completely. You keep trying to placate her, but there is absolutely nothing that could possibly placate her, and some frustration and maybe even anger is normal, and to be expected.
Your mom is still able to recognize that she is in a facility, and knows it is not the way she wants to live, yet it is the way she must live at this time. She is able to have aspirations to go places, but not the ability to go to them. She recognizes that her roommates and other patients are in terrible shape, but she herself is not that bad yet, but how can you tell her that she will someday get sick like they are, too?
Ultimately I am sorry to tell you that it WILL get easier but that will only be when her own cognizance begins to wane even more.
I recall very vividly when my mother in law lived with us, and we sent her to a daycare center during the day. She was incredulous at the state of the other people in daycare and would come home and tell us they were all "crazy" and that she herself was not "crazy". She had no idea how "crazy" she actually was or was not, or that her illness was a progressive one, in which she would continue to lose ground until one day we would be forced to put her in an alzheimer ward when we could no longer take care of her ourselves. We could never tell her that, we just sidestepped the issue to preserve her dignity for as long as we could.
She too, complained of being detained against her will, and wanted to go "home." She would try to bribe the daycare bus driver with her jewelry, or with promises of money, to take her "home"...... to a home that she could never go to again, unfortunately. It was heartbreaking, and it is a terrible dilemma that every caregiver suffers through with their loved one..... a time when they are too sick to be alone, and not sick enough to realize their own deficits.
We felt just as you feel, like we were doing the best we could for her, yet there was no answer that we could give her, that she would accept. The only place I got any comfort was here on this newsgroup, and in our local alzheimer support group.
I am sorry to tell you that there is no answer to this dilemma, but time. And when the time comes that she no longer argues to go home, you will wish she still had some of her faculties like she had now, when she still CAN argue to go home, and that the people in her ward are indeed worse off than she is.
All we can do is tell you what we also went through, and that you are not alone, and that we know how hard it is, and that you have our deepest commiseration. This is a rotten illness, where the person you have known all your life will think you have betrayed them, even when you are doing all you possibly can to help, with every ounce of strength you can muster.
That is the hardest part, that you cannot reason with them, or explain things to their satisfaction. I used to tell my mother in law not to worry, that we were taking the very best care of her that we could. She would say "thank you" but five seconds later she would forget and be confused again. It is the sad nature of this illness.
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Evelyn (to reply to me personally, remove 'sox')
June - 03 Mar 2006 14:43 GMT > My poor Mom is really having a tough time and it's so hard to see her > so unhappy. Just a year ago my Mom was living independently. Last [quoted text clipped - 36 lines] > opportunities to garden, one of her favorite activities. I hope it > helps my Mother feel better. It's so sad when you have to become the parent. I think too that honesty is best. When it's time to get my mother to take a shower and she resists I truthfully and gently tell her "Mom you have a brain disease that makes you think you've taken a shower when you haven't" This always seems to strike a chord with her and she no longer resists. Perhaps the truth would help here. Telling your mother that she has a brain disease that is clouding her judgment might help. If part of her still knows something isn't right, it might work. If it doesn't, just know in your heart that you're doing the right thing. You have helped me in a way...my mom is in independent assisted living and I was afraid that we weren't doing enough to stimulate her mind. Especially when I visited her when she was having a particularly bad day. I was thinking maybe memory care but after reading your story, I know that she's better off where she is. Like my brother says...the owners will tell us when it's time for her to go to memory care. I went back again another day and she was much better and she's always said that she's happy there.......June
Anthony Shipley - 04 Mar 2006 06:07 GMT Somebody wrote
>It's so sad when you have to become the parent. I think too that honesty is >best. When it's time to get my mother to take a shower and she resists I [quoted text clipped - 13 lines] >and she was much better and she's always said that she's happy >there.......June Carers here seem to think that there is one answer for every case, and it's what they do. I doubt that is in any way correct and yields a worse outcome for the carer and patient.
For example ".... I know that she's better off where she is".
To me, that sounds more like "I can feel better if I can thing the above."
anthony shipley
Run away with me; I can make you unhappy.
Tumbleweed - 04 Mar 2006 10:25 GMT > Somebody wrote >>It's so sad when you have to become the parent. I think too that honesty [quoted text clipped - 30 lines] > > To me, that sounds more like "I can feel better if I can thing the above." Since they have seen the Az sufferer in situations X and Y, then I think they are qualified to say in which one they actually are better off, since the Az sufferer themsleves certainly doesnt have the capability to make that judgement.
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June - 05 Mar 2006 00:07 GMT > Somebody wrote >>It's so sad when you have to become the parent. I think too that honesty [quoted text clipped - 34 lines] > > Run away with me; I can make you unhappy. You're right; there's no one size fits all and certainly no easy answers. Whatever works is best. Guilt about any of it benefits no one.....June
A R Pickett - 05 Mar 2006 02:00 GMT Meg wrote in part - > My only hope is that spring is comming and the grounds of the memory
> care facility are wonderful with walking paths and lots of > opportunities to garden, one of her favorite activities. I hope it > helps my Mother feel better. I hope so too! Every little corner of the world is better off with green and growing things tended by someone like her.
Best wishes to you, your mom and all your family.
 Signature A R Pickett aka Woodstock
"Sometimes the facts threaten the truth" Amos Oz, prize winning Israeli author
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