Some puzzling feedback from today's 1 yr. Eval from Mayo. Experiencing moderate to steady ongoing cognitive impairment and memory decline. Needs assistance with all major life functions (dressing, showering, preparing food, vision, speech, etc) DW (age 55) was officially DX almost 2 years ago, but has been showing symptoms for 6-8 years. I do have excellent care giver companions who are in house while I am at work. Rather than identify a stage, (as in 1-7) she was categorized as entering the "severe" stage. What they found rather perplexing was that she is cognizant of her decline, can verbalize the pain of not having what she once had; career, friends, responsiblities. . Neuro knew that we are in a rough patch. It would almost be easier to be in a position of having forgotten much of your past and not having the reminders ever present. Is aware of limitations and need for assistance, but detests it. Neuro team indicated that they had not seen many patients who are "severe", yet mindful of the past. Will make statements such as "no reason to go on living" or "wishing that God would just come and take me home now". . They found it baffling almost that she could "voice" quite articulately her reality given the severe state of cognitive decline. Also found that the latest research is showing that in early onset those afflicted are not as genetically disposed as what was thought earlier. So any thoughts out there? Anyone dealing with severe stages with LO and yet able to verbalize the pain and despair that is so real and so much a part of their life? Very much of a double whammy!
Sundown, I don't think the awareness is as rare as that neuro team thinks. They just haven't picked up on it before. You're dealing with EOAD, and that seems to progress rather quickly , it seems. I am dealing with VaD, and DH has expressed the same frustrations and "no reason to go on living" thinking off and on for years. My thinking is that it just depends on what parts of the brain are under attack at any given time. Sometimes the area of this type of cognition deteriorates a bit and he is less bothered by his losses. Othertimes he is very aware of new losses. It is a doubly whammy. Oh, and my DH is in Stage 6.
I feel for you. My wife is also EOAD and her physical skills are worse than her ability to understand but nothing like what you're describing.
I get that your wife is a strong woman inside. If she is this aware of her own condition and capable of those well articulated thoughts you quoted and the other examples - then she must in my mind be under real duress inside. And by reacting in the kinds of tones you mention it leads me to feel she just has to be strong inside in some ways. There may come a time when anti depressants might help her. I took my wife off them some time ago because the combination of meds kept her in too much of a zombie state which has lead to a remarkable return to some cognition and interactive from a period where there was none.
In such a rare situation as you describe, I would be tempted to treat this aspect more as a normal person. In other words while I do have to help with other skills, I would watch the tone of these perfectly reasonable reactions by any human being to the actual situation - and instead keep my eye on reactions articulated that would show me that she is under stress from it measured against normal stress or duress in any other person.
It sounds like an odd thing to say; but, if she seems depressed by having Alzheimer's then I would treat her like anyone else that has depression and since it's unlikely that therapy would work - that means an antidepressant that helps her to cope with it.
Thanks for your insights Wolf. .Had tried some meds to ease anxiety and depression in past. Seems to work better without them, than battling some side affects. . .always wondering if it is behavioral, part of the pathology, or side affects from anti-depressants. . Went through so much of that prior to "official" diagnosis. Had visitors from DW's previous work come for a visit yesterday. By the sounds of the laughter and engagement, one would almost wonder what was wrong??? . .As soon as they left we had a major melt-down.. "Everyone gets to go back home or back to a job"!!. . "I have to stay here, stuck"! Another verbalized feeling that is very realistic. She is stuck. . Don't know how else you could frame it. But then again, I guess we all are. .
My DW is in the same shape as yours Sundown, but she has maintained a positive attitude. The doctor made the comment that she is unusual in that her mental capacity is bad, but she is still here and knows her situation
I don't think anymore that it really matters what we call it. EOAD, AD, FTD, etc. Dementia is a strange creature no matter what age it strikes, what so called stage one is in or what part of the brain it "attacks". Below is a link to one Howard Glick's blog. Even has a link to an article about him in Forbes Magazine.
As Howard likes to say, 'read and learn and spread the word', or something like that:).
Most times we don't know what is REALLY going on in the sufferer's mind. Might not ever know. But, imoho, Howard's public expressions of his own thoughts of someone suffering from dementia might be as close as we ever get.
Thanks for the comments. . Am anxious to look at the blog site. I have determined that each case is as unique and varying as each of us are in the world we live in. .