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Wondering what you would do....

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Old 09-30-2008, 06:52 PM   #1
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Wondering what you would do....

My mother, age 68, has most-likely-Stage 6 Alzheimer's, and newly diagnosed-stage 4 bladder cancer, and advanced osteoporosis. [Her doctors won't give me "Stages", so I can only presume from what I observe.] I promised her 10-years ago when she had early onset Alz that I would only put her in a nursing home when it was absolutely necessary, which I did after she thought my husband was kidnapping her and grabbed the wheel on a major highway (to her credit though, I would have done same if I thought someone was kidnapping me); after she twice tried to burn the house down (thought the cops-were-a-comin' and to get rid of the "evidence"!), and thought all her friends and family were on drugs (yeah, those 70-year-olds really know how to party!) and was brought home by the police for 'wandering' - went to the mall for a coat in winter despite all the coats hanging on the coathangers at midnight at home... 'Emergency Coat!] Unfortunately, she was diagnosed with bladder cancer later, after I had her admitted to a nursing home. And now she has 5-fractured vertibrae - which could be attributed to a cough, a sneeze, a fall - no one is sure because she's just so fragile in her bones (alarms on the bed, people watching all the time - but it could have just been unreported - but who's to say really?). No matter, she has 5-fractured vertibrae. Let me say she probably only has 2-5years left of Life, sad no matter what and I'm dealing the best I can. But her quality of Life with 5-fractured vertibrae is very painful for her and anyone observing her, to say the least. There is the surgical option to repair the vertibrae -- but she has osteoperosis which is quite bad, so even if they go in to operate, her bones could just break away. I have opted for the surgical procedure IF a REALLY good neurosurgion is available that handles medicare cases (emphasis on the [I]good[I] and [I]handles medicare cases[I] part.

So I'm just curious, what would consensus do in my case? Would you go for a potentially life-threatening/paralizing surgery to ensure quality of Life for a parent where there really is no hope beyond 2-5-years for the POSSIBILITY they could be comfortable for awhile -- and in knowing, this could happen in the other vertibrae at any time? Or just let it be and let her be medicated enough to kill the pain with no threat?

She can't really speak for herself this week (darn fentynal patch and dilodid!).

If this was your mom, what do you think you might do? Opt for surgery despite the risks, or go for it?

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Old 09-30-2008, 09:36 PM   #2
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Re: Wondering what you would do....

Welcome to the board Porch. It sounds like you have been dealing with this disease for a long time. I can relate to some of your stories. We tried to keep Mom (Alzheimer) and Dad (Vascular Dementia) at home and it was amazing how quickly calm could turn to chaos. They have now been in Assisted Living (together) for about a year.

I have ask of myself, and here on the board, the same question you ask. I guess with me it depends on many factors but it all boils down to one question.... will it significantly improve quality of life. Is the benefit worth the risk and the distress to her.... and will it truly make her life better in a way that would benefit her.

We have been programed to believe that medical intervention is natural. I know I struggle with... when do you stop doing everything the medical community can do to extend life. Yep... I am still battling this question in my own mind so I am not sure what to tell you. One day I will have to make the same kind of decision and tonight I am not sure what I would do. In my case Mom's wishes have already been expressed. She hates this disease and has fought it every step of the way. If she had her way she would not be with us today. So I would think long and hard to make sure I did what was best for her knowing her desires.

What you have is a pain management issue which I think is different from a life extending procedure. I would be more likely to agree to pain management than life extension.

I do hope your Mom does as well as she can. Please let us know how she does. Glad you found us and thank you for the post. It does make me ponder what might be. I will keep you and your Mom in my thoughts and prayers.....

love, deb

Love, deb

Old 10-01-2008, 02:27 AM   #3
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Re: Wondering what you would do....

Welcome to our board. I would have to agree with Deb in that is it a quality of life issue or a pain management issue. I have a tendency to lean to the pain management as it sounds like your Mom has many issues to deal with along with the dementia. Do you know what her wishes are or how she wants these things handled? If you weren't able to have that discussion with her then go with your gut as these issues come up. I would think that if the pain was taken care of it would make dealing with everything else a little easier.

You'll be in my prayers,
Love Janie

Old 10-01-2008, 06:45 AM   #4
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Re: Wondering what you would do....

My opinion is: no surgery no radiation no chemo.

If your Mom is in stage 6, she does not have years to live, but only months. Near the end of stage 6 the swallowing reflex stops working, it is all you can do to get a bite of food or a swallow of water into the person, and they lose wieght dramatically. By then they ought to be on Hospice care ... end of life care ... which always allows any kind of drug to prevent any pain, but no 'life saving' methods, since the life to be saved is running out now.

I hope none of this sounds too harsh or too scary, but it all happened to my Mom, recently. She died in Dec 2007. The NH where she was told us there was nothing anyone could do to prolong her life. Mom also had a small lung cancer and a small breast cancer -- none of that ever got to where it was dangerous, the Alzheimer's disease killed her beforehand.

I suggest contacting Hospice. I doubt if that life expectancy is accurate. Where did you get those figures?

Good luck with it - this is a rough time for you, and I truly sympathize. But life goes on.



Old 10-01-2008, 09:45 AM   #5
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Re: Wondering what you would do....

Sadly, unfortunately, I totally agree with Martha.

When I read your post, I too was wondering how stage 4 bladder cancer and stage 6 Alzheimers translated into 2-5 years left. It is also my understanding that end stage 6 is the beginning of the immediate end.

My dad is a firm stage 6 right now. And his medical records include a DNR, a standing order for no chemo, radiation or other care other than pallative. We will keep him comfortable, and that is all.

My prayers go out to you, my dear.

...lil' deb

Old 10-01-2008, 02:00 PM   #6
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Re: Wondering what you would do....

Been there with my Gran. When the time came my brother (Gran's favorite and best bud) opted against feeding tubes and extraordinary measures. It wasn't pretty but we were by her side for the last two days. Keep your Mom comfortable and hydrated (or at least keep her mouth and lips moist as best as you can, we kept ice cream and ice water bed side all the time). Let her go in peace - it truly is the kindest thing to do.

One thing I learned was that sometimes we do what makes US feel good. I learned a great lesson from my brother, he did what was best for the number 2 woman in his life (wife is number 1 of course). I would not have been so brave, or so I fear, but he was right.

Old 10-01-2008, 05:19 PM   #7
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Re: Wondering what you would do....

I want to thank each of you for replying and your words of advice. I genuinely appreciate your time and your thoughts. It is definately not a life extension issue - and no matter how much we discussed, this just never came up. We have a DNR and DNI on file with instructions for no chemo, no radiation - just "keep her comfortable and out of pain". So I guess it boils down to, if it were you, and you had 6-months to live, would you opt for a surgery that would *potentially* allow you to sit up on your own without a great deal of pain (or possibly paralize you)? I've had to make a lot of really difficult decisions in the past few years and it's just incredibly sad to see someone you love in this condition. And yes, Martha, she is forgetting how to open her mouth to eat - lately has only been eating the soup and oatmeal at the nursing home (I'll be making her a "soup" this weekend from a Red Lobster as a treat)... Thank you all, again I really do appreciate your time and can certainly empathize with your situations. G-d Bless!

Old 10-01-2008, 05:22 PM   #8
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Re: Wondering what you would do....

Oh, forgot to say that it was the doctors who said it could be 2-years -- or even as long as 5 for Mom's Life Expectancy. I'd much rather plan for the 5 and be prepared, than not... But, quite honestly, if she makes it the next 6-months, I'll really be surprised.

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