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47 year old daughter of an earlier onset Alzheimer's dx Mother
tanyajohn posted:
I love my Mother very very much and would do anything for her. The physician's told me that there was NO way I could care for her at home even if I quit my full time job. I am the middle child and Power of Attorney. The decision to place her in an Alzheimer's unit (locked down) was one of the very hardest things I have ever done but I realize now 2.5 yrs later, the docs were right. I couldn't have given her what she needed. Although she is a distance away from I visit every weeked and try to engage her but She is past that point. She know longer knows me, can't communicate, is incontinent, sleeps a lot, and now she is having trouble with swallowing so we now aspiration concerns. She also has trouble walking. Even though all of this is going on with her - it also goes on with me. I feel her troubles, and wish very much If I knew what she was thinking. Could I make things better for her? My brother nor sister visits much. My brother has only seen her 2 times in the last 3 yrs. But I can not worry about my siblings, I have our Mother to love on, try to take care of and do the little things I can for her, still not knowing if anything I do matters for her, but it matters to me. Now, I am exhibiting memory deficits and having nightmares regarding my being diagnosed. How can I keep myself together in order to continue my deligence toward Mom??
cjh1203 responded:
I'm sorry this is such a struggle for you. Your memory problems could very well be caused by the stress this is obviously causing you.

It sounds as though your mother may be eligible for hospice care at this point, and it would be good to discuss that with her doctor. She could continue to stay where she is, but hospice workers would oversee her care and visit her regularly. They will do everything possible to make sure that her medical care is appropriate, and that she is as comfortable and happy as she can possibly be.

That would ease a lot of your anxiety, I think. It sounds like she's in the very advanced stages of her disease, so there's probably not a lot you can do yourself. Of course, you should do anything that makes you feel better, such as continuing your visits to her.

Hospice care will not only provide support and comfort for your mother, but for you. They don't just take care of the patient. I hope you will check into it; it can make a world of difference.

Please keep us posted. My best wishes are with you and your mother.

tanyajohn replied to cjh1203's response:
Thank you so much Carol. I will talk to Hospice, I had mentioned it a couple of months ago and then as you well know, things pile up and you forget your options. Thank again! I will keep you posted.
tanyajohn replied to tanyajohn's response:
I placed the Hospice Consult and Mom's physician at the Nursing home refused to sign an order. I am beyond frustrated!!! He said that he thought she was 'stable' and he could take care of her. He would not even agree for Hospice to come in and evaluate her. Does he not understand that they would come in and give me 'extra' care?? What do I do now??
cjh1203 replied to tanyajohn's response:
If she has all the symptoms described in your first post, especially the recent development of difficulty swallowing, she doesn't sound "stable" to me. I can't believe the doctor won't even allow an evaluation by Hospice.

Is it possible to get another doctor to take over your mother's care?

Perhaps you could call your local Hospice and ask them about this problem; I imagine it's something they've run into before. Here's a Hospice web site with a phone number you might try, too.

You could also call your local Alzheimer's Association and Senior Resource Association (or whatever it's called in your area), and see if they can give you any advice.

I'm really sorry you've run into this obstacle. Just from my outside, non-medical perspective, it doesn't seem that the doctor is looking out for your mother's best interest.

Please keep us posted. I hope you are able to find someone to help you at least get an evaluation for your mother.

tanyajohn replied to cjh1203's response:
Thank you Carol. I was with Mom yesterday and she may have aspirated at lunch. She was hungry but would not allow us to feed her (me and 2 CNAs). They helped her to bed and gave her a breathing treatment and her vitals were good. The Doctor came in!! I couldn't believe my luck!! When I approached him, he knew me. He asked me why I wanted a Hospice consult. I told him that it would be more pointed care with more attention and they would come in give her a shower and take care of othter things. He was not aware they came in and did that!!! He has been a physician for sometime and I was surprised. He then asked what they would do for me and I told him they would be support for me. He understood (with the education) and placed the Hospice consult. Hopefully they will see Mom today!! Thanks

cjh1203 replied to tanyajohn's response:
That's great, Tanya! I'm glad the doctor was willing to listen to you and take your concerns seriously. Please be sure to let us know how it goes.

Judith L London, PhD replied to cjh1203's response:
Hi Tanya,
So glad the consult has been made. There are many ways you can still reach out to your Mom-she may understand more than you would think - picking up words of comfort, voice-tone, aromas, music she has always liked hearing nice things going on in your life. You've made wise decisions about her care even without the apparent support of your siblings. Check with Hospice about her not eating as I have heard that it is a painless way to let go.See if there is a support group in your community for you - it helps.

Sending you lots of support,
tanyajohn replied to Judith L London, PhD's response:
Thank you very much Dr. London. I am currently trying to get her moved to a nursing home closer to me which had not been available in the past.

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