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   Enbrel, Anyone? (Alzheimer's Disease & Dementia board)

17th January 2008
You can research the study online -- patented process, tried on only 15 patients, yada yada. I doubt you'll find a responsible physician willing to experiment on your wife, due to the potential liability.

It also sounds like she's still in the diagnosis stage if they're still running tests. If it's been confirmed and you've gotten your 2nd or 3rd or 4th opinions, there are treatments both for AD and for other symptoms like depression. Her doctors should be discussing Aricept or similar drugs with you both, for example.

There are lots of resources for both her and for you. There's a lot to learn about coping with this disease. It's not an immediate death sentence. My DH was in his 50s when diagnosed, and has had several good years before going into severe impairment. There was a lady on this board five years ago who posted coherently and with good humor eight years after being diagnosed. Get your legal paperwork in place (living will, health care power of attorney, wills, etc.), and put together a good medical team. Look into research programs at your local hospitals, to determine if she's eligible to participate in research if that's what she wants to do. There are a lot of good books on the disease to help, like the 36 Hour Day and AD for Dummies.

Bottom line is that there isn't an available effective treatment that will make this go away (or we'd all be getting it for our loved ones!), but there are treatments and lifestyle changes that can delay the progression of the disease and make it easier to maintain functioning as long as possible. I hope her illness turns out to be something else.
18th January 2008
If you dig into your heart and determine that you really can't handle this, you might have to face that you're not able to face what's coming. Consider getting some counseling, talking with your religious counselor, whatever. You're going to need to talk to a lawyer about getting the living will and other documents in place anyway, so you might discuss your other options. Whatever you decide, though, you will want to be calm and not acting in the anger stage. If you decide you can't handle it, honor your wife enough to see what you can do to ensure her care in the future. Even if you decide to leave her and divorce, you will be responsible for alimony/spousal support. The person on her legal documents like her power of attorney needs to be selected now, while she may still pass a competency test -- and you'll both want someone who will be there through the entire illness.

I want to make clear that I am not criticizing. This is something that I thought about too when my DH was diagnosed with early onset. In fact, both my DH and I discussed the best way to preserve some assets, preserve the family, etc. and did consider whether divorce might be a good idea even if we continued to live together. I'm in it for the long haul, but that was a personal choice. I don't criticize anyone who can't do this, because caregiving is incredibly tough. All you have to do is read the posts on this board to see what people go through, and some of the posters clearly have earned their halos and angel wings multiple times.

I know that my DH would not have wanted me to give up so much of my life, if he truly understood what was coming. Yeah, no sex. Yeah, no money. Yeah, no-one to talk to in our home (except a teenager, which can be like talking to a pet with attitude, and two college kids -- and we can't dump personal stuff on our kids). Yeah, no fun. And my DH might live another 5 or more years. So I symphathize. I understand the anger too. Consider reading "Death and Dying" about dealing with terminal illness. Anger is identified as one of the very natural stages, but you don't want that anger to affect your wife's treatment or quality of life. I can guarantee that stress does make an AD patient much, much worse.

Talk to the Doctors about the prescriptions too. Many of them have bad side effects, but some of this might be helped by changing the dosage or trying a different drug in the same family. My DH couldn't tolerate Aricept, for example, but Reminyl worked better for him.
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