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 My mother's recent decline 
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post My mother's recent decline
I haven't posted anything recently about my 87 y.o. mother, dx 2/2010 after a significant decline and in an SNF since that time. I'd say her decline since diagnosis has been steady and gradual until the past two or three months, when it has accelerated dramatically.

She is increasingly confused and is becoming difficult to handle. I am thankful she is not combative, but she is very uncooperative. She believes she can still manage all of her ADLs, but the nurses will find her "washing" herself with a dry washcloth and things like that, so of course they are trying to help her with most of her ADLs now (she needs help with everything except eating). Last week, she refused to wash or change her clothes for three days! I am grateful that the nurses are extremely patient and respectful rather than just forcing her to do things, but it is hard for them.

She has always wanted her door shut and the nurses try to get her to keep it open a bit so they can look in on her, as well as to reduce her isolation (she refuses to participate in any activities or do anything outside her room except walk). So she started barricading herself in her room with her tray table.

She easily becomes hysterical and irrational. My sister and I get frantic phone calls from her that she is too hot, too cold, or wants to move to another SNF. (Yes, she does get anti-anxiety meds at those times.) And all the while, she is telling my sister who lives 1,200 miles away that no one helps her or pays any attention to her! Fortunately, my sister knows better.

There is more but I am sure you get the idea. One of the nurses told me that my mother is still aware that she is failing and is desperately trying to hang on and maintain control. She was such a competent, independent woman, very intelligent, and this disease is destroying her inch by inch. It is so hard to watch.

Julianne


Thu Jul 28, 2011 9:55 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3316
Location: Vermont
Post Re: My mother's recent decline
I am so sorry Julianne. This is such a difficult journey for everyone. I know just what you are going through and hope you will take care of yourself as you are doing everything you can to help your mom be as comfortable as possible. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Jul 28, 2011 9:59 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: My mother's recent decline
My heart goes out to you, as it has all along this journey. You are doing a fine job. It is heartbreaking to watch this happen and be powerless to stop it. Your love and your presence are a great gift to your mother.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Jul 28, 2011 10:07 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: My mother's recent decline
Thanks, Lynne and Jeanne. It is really just so sad. I'm not sure if my eldest brother's sudden death back in May has brought on this decline or if it would have happened anyway. I guess the cause doesn't really matter. It is still just as hard either way.

It's been said before, but what a lousy disease this is!

Julianne


Thu Jul 28, 2011 11:00 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: My mother's recent decline
Julianne,
I think they realize their losses the whole time for the most part, I am sorry that things seem to be progressing and am glad that the nurses are patient with your Mom. Stay strong!

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Irene Selak


Thu Jul 28, 2011 9:05 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: My mother's recent decline
Thanks, Irene. The nurses keep telling me that this is just a phase that will pass and my mother will be less distressed. I hope so. We are really fortunate to have her in this SNF. The staff is wonderful.

Julianne


Fri Jul 29, 2011 7:26 am
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: My mother's recent decline
Julianne,
Something you said in one of your posts has really stuck with me. "You and I and so many others are just doing our best in very tough circumstances. It's all we can be expected to do." I constantly remind myself of that and I thank you for it. Now, you remind yourself of that because you have done the best you can and will continue to do so. I can just feel the sadness in your words. Straight up, Lewy sucks! Prayers for your Mother!

Hugs,
Michelle


Fri Jul 29, 2011 11:34 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: My mother's recent decline
Thanks, Michelle, for the timely reminder!

The current phase just makes me feel so helpless. Yesterday morning, my mother called completely hysterical, loudly wailing, and it turned out that the cause was that an aide had just tried to get her up out of bed because it was 9 a.m. (very late in the SNF) and she needed to have breakfast. My mother said the aide was mean and trying to make her do terrible things! Of course I knew that wasn't true but she wouldn't listen to me. I called one of the nurses, who went down to see her and then called me about 45 minutes later. She said my mother is like this every morning and one of the nurses usually gives her an Ativan and spends about a half hour with her to calm her down. I didn't realize it is a daily event! It is just so pitiful. Thank heavens the nurses take it in stride and are so kind and attentive.

Yes indeed, Lewy sucks.

Julianne


Sat Jul 30, 2011 9:24 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My mother's recent decline
Julianne wrote:

Yes indeed, Lewy sucks.

Julianne

It does, indeed, Julianne! :cry:

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jul 30, 2011 12:24 pm
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