There are days when I feel like I'm either developing dementia or am doomed to develop dementia. I think about my mother or see her and suddenly I forget basic stuff. I walk around feeling kind of lost. I've even told my husband to feel free to put in a nursing facility or help me help myself out of this world if this ever happens to me.
I even had a brain test done not too long ago. The results did not show any cognitive impairment associated with developing dementia, and yet there are days when I feel like it's just a matter of time before this disease strikes.
Can any one else relate?
I don't know if my brain damage is from recreational drugs in the 70s, a misspent youth playing football, or worrying about my elderly parents for the last 5 years. I'll have another beer and ponder this..........
My primary doctor said it is all stress related regarding my own forgetfulness. It just takes longer to find the correct file cabinet in the brain and the folder that has the information I need. It can take a couple minutes, or the rest of the day and usually at midnight I get the ah ha moment of what I was trying to remember :)
Thank goodness for spell check, as my spelling has gotten terrible in the past year or maybe it's just my typing :P
".. thinking for two .. "
Funny as it sounds .. it's right on.
My husband has early onset Lewy Body Dementia, 12 years with symptoms and 5 yrs of that with a diagnosis. My grandmother had Alzheimers and my father had some sort of dementia, but the doctors never named it. So I may have genetics against me AND I'm in 24/7 contact with dementia.
I agree, or should I say desperately hope, that it is stress. After 7 years of telling doctors there was something wrong with my husband, the diagnosis at least told me I was not crazy, but dementia is another story. But if the stress of those 7 years, getting SS Disability, navigating VA benefits, and 5 yrs of caregiving, wasn't enough stress, I think the most stress is the unknown. The unknown of what is going to happen and when, AND when it is all said and done will there be enough for me to survive another 20-30 years.
It seems as his disease progresses the more my memory goes. I figure I'm thinking for two and working without a crystal ball, My brain is just not wired for that.
I read about a study, reported in the Smithsonian recently, about infants and toddlers and their reactions to the misfortunes of other babies. Many of them felt bad if another kid in their playgroup felt bad. In some this empathy was very extreme, and some did not seem aware of the distress of others at all. But most were affected by the distress of others.
Seems "normal" to me that if someone we love a lot and are around a lot has some symptoms, we may feel those symptoms, too. I don't think this is about a pathology in our brains. I don't think I really have more severe arthritis when I am around my mother, or that I had dementia when I was caring for my husband. I think these are just "normal" reactions of an empathetic person.
Just my theory, though. It works for me. :)
john mellencamp. lol
Those of us of who caregive, and especially the ones who embrace it and (yes, it's possible) enjoy it, are just a weeeeeeeee bit clairevoyant and empathic. And even some of us who don't like it or embrace it are. I'm convinced it's part of the genetic make-up.
I'm sure the 'experts' would say that the clairevoyance is merely that we've learned enough of the behaviors and nuances of our loved ones, that we can simply anticipate their needs or wants. Maybe. I don't think so. Many would call me crazy just to think it.
Those same experts would likely call the empathic stuff just our way of being sympathetic and being too involved. On that, I'd say they're not entirely wrong, but being empathic means you actually feel what they feel. My perfect example: I'd been caring for E about two years, full time and living in her house, when I started feeling like, "geeeeez, why am I here? why don't I just die? how soon can I arrange it?" I promise you they were NOT suicidal thoughts, I just wanted it all to end. And then, one day, I was telling our visiting nurse about it, and saying how difficult it was to stay positive around E, when something in me went .. "omigod .. how much of what I'm feeling is what *she's* feeling???" Cuz, I'm not the suicidal type, I know why I'm here on the planet, I know my purpose and I make every day count for something. Fortunately, I'm also one of those who, once I've identified a conflicting emotion can shut that door (in a good way = not bury it .. simply close access to what's causing it, emotionally) and walk away clear headed and healthier. So, I just chose to feel only MY feelings and the world seem to brighten and clarify.
Just my thoughts on it.
But I'm TRYING (believe me, not always successfully, and I'm sure you can relate!) not to worry so much ... I am neither religious nor a follower of any particular new-age or "other" philosophy, but I have friends of all stripes, and one of my friends who grew up in a particular sect is fond of saying that we "walk in the direction we're pointed in." While I adamantly reject the notion that anyone CHOOSES an essentially involuntary fate (like cancer or dementia -- leaving aside the few lifestyle choices we can make that may or may not help us have a slightly better chance of averting these outcomes, depending on what the studies are saying this week!), I do agree that it can't be healthy to dwell or fixate on the conviction that a particularly unpleasant possible future is the only one I can have. So I try actively to imagine and BELIEVE in other futures for myself.
Having said that, I also intend to keep a clear head and eye on myself, and not to be in denial if a dementia really does rear its ugly head. I can relate to your remark about asking your husband to help you help yourself out of the world if this happens to you (though be careful about this, as you wouldn't want to put him in a difficult legal position; different states have different attitudes about prosecuting anything that feels even vaguely like "assisted" suicide ... up to and including simply handing someone the drugs they then take). As I have written about elsewhere on this board, my mother was able to end her suffering legally at the end of her struggle with breast cancer because she lived in Oregon, one of the state's with a Death with Dignity Act, where it is possible to obtain a lethal prescription of sleeping pills if you are certified by two separate physicians as being within 6 months of death and in your right mind. At her passionate request, I helped her go through the process of obtaining her prescription and was present at her death, which was fast and peaceful, and exactly what I would want for myself or anyone else who was suffering as she had been. My father, who also lives in Oregon, will not have this option because he has dementia and by the time he can be diagnosed as within 6 months of death, will most certainly not be described by any doctor as in his right mind (I would say he already is not).
I learned the other day that one of my favorite sci fi/fantasy comic writers, Terry Pratchett, has Alzheimer's. Terry, a British writer, has apparently made no secret of the fact that he does not intend to live out this disease to its inevitable conclusion, though he is still living and working while he can in the UK. I read in an interview with him about Dignitas, a Swiss group that helps those with terminal illnesses and severe physical and mental illnesses to die assisted by qualified doctors and nurses. Obviously, people who want to avail themselves of this assistance have to travel outside the US to them, and many (including people from the US) have. It gave me some hope to learn that this organization existed (you can find more info about them on the Web), and I hope that it or something like it still exists if in the future if I need it ... because while I respect everyone's decision to make their own choice for themselves, I personally would want to be able to make the choice that my mother had -- and I despair of ever being given that right in this country. I'll count myself lucky if in the next 10 years, Death with Dignity comes to my state, as it is (so gradually, so painfully slowly) gradually spreading to other states (up to four now, I think?).
I know many will not agree that choice and/or would not elect to take it for themselves, and I respect that. I do not know, if push came to shove, what I would or will do ... but I know right now that it is an option that I would/will consider, and that keeping some money in reserve for international travel for this purpose is something that I intend to do if I possibly can.