mimi427November 4, 2005

The message below was posted at another care-giver's site. I pasted it here, hoping that some of you would have some answers for her...I hope that this is okay to do:

For those of you that have already lost your loved one to Alzheimer's disease can you please answer some questions for me?

We have not been able to get Hospice to enroll Momma because she can still smile and turn her head.........yep, this has to have been lost as well as everything else she has lost.........a smile? "sigh"

Her situtation is that Alzheimer's is the only terminable disease she has been diagnosed with, her emphysema is not life threatening at this point.

She is just laying there guys, sometimes she says a sentence to me.....sometimes she does not answer at all, just stares straight ahead.

She is stiff, legs are up in the fetal posititon. She is pooping and peeing most of the time (in diaper of course), but sometimes there is no pee for days and then sometimes she stops pooping. She is at times having difficulty swallowing and she barely eats or drinks anything. I am having to pick her up as you would a child carrying them to bed, and it hurts her all over to be moved. I am giving her the best baths that I can but frankly guys I have NO medical training and wonder what I could do to save her from the pain and torture of just moving her around?

I have NO ONE that I can get a straight answer from and I feel like I am walking around in a tomb. The death watch.

What can I do at this point? Just take her to the hospital and have her evaluated so that they can tell me what???? End stage Alzheimer's........yeah, I know!!!!!!!!!

What can I do without another diagnosis, nothing? Isn't there anyone that gives a XXXX about these people? Does anyone ever come in before the Medicare XXXXXXXX get their guidelines ( to allow Hospice) met? Does anyone have any advice for me here? Is there something that I am missing?

Momma would be better off in a nursing home now! Have I kept her here out of love just to feel guilty now for not being a better caregiver now that she is so bad? I have NO idea what to it just me? Do I just watch her waste away and have no idea if there is something I can do to help her?

How did you guys do it? Did your loved one have another medical diagnosis that allowed for Hospice to service them? Momma was healthy as a horse until this disease took her. Remember her physcial body went faster than her mind did. She did not do like the typical Alzheimer's patient does. She did it all backwards...??

I do not know what I need to do, please help me figure out something or tell me you went thru the same. I feel lost

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Mimi, there is a lot of complex problems here. The first is that in most areas, Hospice is for those close to death and her mother does not sound as if she is near the end. While Alzheimers is a terminal condition, it doesn't mean that it's going to happen soon. She is still capable of some movement and speech and feels pain. If the poster can't manage her mother alone, and she can't hire additional help, then the only solution is a nursing home where there is staff to give around the clock care.

    Bookmark   November 4, 2005 at 12:24PM
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Oh, Mimi, how horrible for you all. When my mother entered hospice, we were told that a doctor had to certify that his/her opinion was that the patient had less than six months to live. Mother's brain was full of agressive colon cancer, so this wasn't an issue for us. They seems to have guildelines for specific conditions, and this is where you're caught. The doctor has to be able to say that a specific condition will kill the patient within six months, and people with your mom's level of Alzheimer's typically live longer than that. If you mom also has private insurance, their guidelines may be different.

I've included the link for Medicare's hospice stuff. You might be able to dig around in there and find the actual rules. Also, check with the local eldercare services in your area. This would be there speciality, and they might know more about this than her doctor.

If you think that your mom would be better off in a NH now, it's time to start the process.

Here is a link that might be useful: Medicare's Hospice manual

    Bookmark   November 4, 2005 at 12:30PM
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thanks for your concern, but this is not about my mom...this is a posting from someone else at another caregiving site that I pasted into this site in the hopes that someone here could give her does sound like a very painful situation; I'm just trying to help.
Logfrog, I know you have so much experience with this; you are probably right, her mom is probably not ready for hospice yet...thanks again,

    Bookmark   November 4, 2005 at 1:43PM
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oops! Perhaps I should actually *read* a post before I reply!

    Bookmark   November 4, 2005 at 3:26PM
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