Importance of testing...

[Librarygal59]

You all are so much help to me and I am trying to gather as much info as possible. Your opinions are invaluable to me! My mom is somewhere between a stage 4 and 5 at this point. Her decline is shocking since we (my dad) cut her Aricept in half (we suspected the running sores she was getting to be caused by the Aricept), in spite of my earlier comments about her apparent 'turnaround'! Not happening. ANYWAY, my question is this: Are there any advantages at this point, of having her formally evaluated?? Her GP is not known for his discretion with feelings and long ago gave her a cursory, quick 'cognitive' test and announced that she had Alzheimer's. But should we be taking her to a neurologist for 'care'? I mean those 2 drugs (Namenda and Aricept) are all that's out there for them, right? (Dad is doing well ...he's very sharp but can't stay that way forever and some days the stress of being with her all day everyday SHOWS) KWIM? I'd love just any comments any of you might have about this. (I help as much as he'll let me and see them almost daily during the summer (I'm a teacher)...... Librarygal59

[Martha H]

As ar as drugs are concerned, I never found anything that helped Mom. Drugs for AD currently available are Namenda and Aricept; neither did a thing for my Mom and we stopped them because of digestive side effects.

Other drugs are often used in treatment but they are sleeping pills or tranquilizers to work against night wandering (sundowning), anti anxiety drugs to help reduce violent attacks of fear, anxiety, endless screaming and crying.

After 5 years of at home care for Mom, she did wind up in an excellent nursing home for the final 2.5 years of her life. She was cared for very well there. My brother and I were amazed. After all our guilt feelings about not being able to care for her at home any longer, she was happier there. Group activities, around the clock care, no decisions to make (even trying to figure out how to take a shower, and what clothes to put on, became frustrating obstacles to her normally happy life!), her hair was combed, her teeth brushed, she was sppon fed when she didn't seem interested in her dinner, a doctor examined her weekly, nurses watched for any signs of trouble. It was an amazing relief to the family and an improvement in her quality of life (this contradicted everything I had ever believed about nursing homes!)

Good luck in your decision making.

Love,

Martha

[Raffeer]

Librarygal-
I think you need to establish that she does have AZ or a form of dementia that there is only palliaitive care available. Aricept is, at best, only a short term answer. If she has not been already, she needs to be seen by a neurologist to rule out the other possible causes of dementia (a few of which are reversible).
If a neurologist has already seen her and feels she has AZ there really would be no gain in further testing.
Your time now could be spent setting up an extensive home care system since that seems to be what your parents want. Be aware though that there will come a time when your Mother has no awareness of place, maybe then a placement might be in order. Your top priority at this time will be to assure your father's well-being, that he is not consumed by his wife's care.
I wish you well.
Raffeer

[DGabriel10]

I agree that testing only rules out possibilities that might be reversible or gives you a diagnosis which gives you a direction. Different dementias progress at different rates and create different problems. Dad's dementia is vascular therefore it does not have a linear progression. He got worse, the stabalized for years, then took another turn for the worst, and has now stabalized again. Mom's Alzheimer's has been a steady down hill progression. ALZ can not be diagnosed from a quick cognitive test. It can show an indication of cognitive decline but not what it is coming from. Yet you know what you are seeing and if you are satisfied then nothing else needs to be done.

I can relate to your Dad because I have seen what the situation did to my Mom. For years she was determined to keep Dad at home. In her mind it was her job and her duty. For years she never waivered. Then we noticed that she was on an antidepressant. She had been to the doctor and they had decided that her problems were related to depression brought on by the constant caregiving. I remember her ranting, "Why don't you keep your Dad for a week and see how you feel!" Yet she refused any help repeatedly. That was actually the start of her ALZ. Now she is well into ALZ and she is very angry and bitter that she was burdened with this duty which she still has because Dad is still with her. Her duty is her burden and she still will not let go of it. I don't know what we could have done differently because of her stubbornness and determination to do what she has done but I do see now what a monumental tole it took on her life. An unloving Mom who she ended up caring for with ALZ, caring for four girls and not fulfilling her career desires, not getting to travel as she wanted to, caring for a husband with demenia for almost a decade, and then ending up with ALZ herself while still caring for Dad has left her an angry bitter person. I have read that the ability to control impulses and being stuck in a mind set are two of the manifestation of ALZ. So Mom is stuck in her depression and no longer has the ability to control her anger and bitterness. She and Dad are in a facility and thought she has good day she still want to take Dad home. It has made for an incredibly bad situation. So your Dad many be managing ok now but please do take a long look at the tole it is taking on him and remember, that generation took committment and duty to heart.... to their own detriment.

Love, deb