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Posted
I should be feeling fine. I just had 10 days off and away from caring for my husband who has mid- to late-stage AD. However today is the third day that I've spent 24 hours caring for him which includes dressing, bathing, toileting, teeth, shaving, helping to feed etc. My persistent stomach pains had subsided but have started again since my return home.

Tonight when I tried to get him to raise his foot so I could remove his soiled clothing to prepare for bed, I got very angry and starting sobbing. I know that this is upsetting to him. He doesn't understand why I'm crying. I just feel like I'm going to lose my mind also. I feel I can't do this any longer. I also know that putting him in the AD unit at the VA will kill him emotionally and probably physically.

One year ago I had a mastectomy followed by 6 months of dose dense chemo. Yes, I forgot to get my annual mammogram and was 8 months late when I found the lump. I have paid the price for not taking care of myself.

I feel like if one more bad thing happens in our life, I will not be able to cope. I feel like I can't handle his care any longer. I'm running out of money, behind on my paper work and taxes.

Things usually seem better in the morning light but I just don't have the positive outlook that has helped me so much in the past.

Any suggestions for how to handle this stress?


We celebrate the times when the personality and intelligence we knew so well emerges briefly. We laugh, we talk just like old times and then suddenly, he is gone again into that other world that we don't understand. We yearn for those brief moments; we drop everything and celebrate your "visit."
 
Posts: 19 | Location?: Marin County, CA | Registered: October 22, 2007Edit or Delete MessageReport This Post
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Dear NoTime: Sorry you've hit a rouch patch. It is just a patch, for the record. In spite of that, who took care of him those 10 days? Family? Friends? Agency? Perhaps you could call on them again for a break at least. I once learned about a concept called "good enough mothering" which shocked me at first, because I thought mothering (back then) had to be perfect. But since then I've used the idea of "good enough" to help me cope with certain things. I took on the care of a severely handicapped neice and learned how to use "good enough" on her. I used to bathe her every single morning before sending her to school. Crazy! Every other day in the evening was better. So I suggest you do "good enough" caring for your husband. "Good enough" might not seem good enough for him, but you need little breaks in the middle of caring for him and those breaks can be minutes or hours, depending. I found myself yelling at my mother (AD) once when she wouldn't lift her foot for me to change her diaper. She began to cry. I could have killed myself. I began to cry, then I hugged her and begged her for forgiveness, and she just held me and cried with me. It is a black mark in my life but I learned something from it, that I'm human, that her disease is devastating me, and that I can move on and learn patience. I don't know what else to say right now. Write back when you can. Hope this helps, if only a little.


Saribet
 
Posts: 426 | Location?: Bronx, NY | Registered: December 02, 2007Edit or Delete MessageReport This Post
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Thank you for your advice.

The morning light helps so much for thinking clearly. I slept with difficulty next to my husband all night. Stroking his head and holding his hand made him (and me) feel much better.

It is amazing how I seem to pull up the strength when I feel so desolate. We will get through this. I love him so much and pray that he has peace. Patience and strength are my constant request.

Thank you for your kind words. You have been through this and understand the frustration.


We celebrate the times when the personality and intelligence we knew so well emerges briefly. We laugh, we talk just like old times and then suddenly, he is gone again into that other world that we don't understand. We yearn for those brief moments; we drop everything and celebrate your "visit."
 
Posts: 19 | Location?: Marin County, CA | Registered: October 22, 2007Edit or Delete MessageReport This Post

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Dear notime4meetings:
First, it must be noted what a tremendous job you are doing and what a genuine gift of love you have given to your husband.

Saribet kindly and wisely shared her lesson of applying "good enough" mothering as a parallel to "good enough" caregiving. But what is implicit in both- and in your initial posting-is that you are long overdue to put your own selfcare first. You even shared: "I have paid the price for not taking care of myself." And my fear is that you will continue to if things don't change.

We ALL need constant support and care for ourselves especially when our lives are deeply complicated by caring for someone with Alzheimer's disease. I don't know what forms of selfcare you have engaged in, but I was pleased to read that you took time off for yourself. It's safe to assume that that didn't come without a great deal of planning. Are you in a support group or two? Do you have an individual couselor with whom you can confide and address your own needs? Are there times set aside in each day that are just for you? Alone, without having to worry about your husband?

You stated that: "putting him in the AD unit at the VA will kill him emotionally and probably physically". I'm not sure that that is necessarily true. It's quite possible that once acclimated he will actually benefit from activity and engagement with others and a staff who are likely well-trained in dementia care. Relocating him to the VA facility, without question, would be an enormously difficult decision; however, it is one that merits serious consideration as it would allow for him to have constant care, but also, you to be afforded self care. Without it, it is highly possible that it will be you that it will "kill" both "emotionally and probably physically".

Please allow yourself the time to fully consider your needs as well, and the various options that may exist to what's best in these given circumstances for BOTH of you.

Our 24/7 Helpline is here whenever we can be of assistance. Please don't hesitate to contact us: 1-800-272-3900.

I wish you all the best,


David P., Administrator
Alzheimer's Association
 
Posts: 58 | Registered: February 15, 2007Edit or Delete MessageReport This Post
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