I agree Lynn.

And as with so many aspects of addressing this disease, one size does not fit all. If my mother were to be diagnosed with dementia I'm sure my sibs and I (and with her geriatrician's complicity) would not use that word, would protect her from details, and would generally let her use the coping devise she has used very successfully all her life: denial. Why would we expect or want her to change now? It would be an unkindness to try to force the issue.

When Coy regained enough cognitive ability to understand the diagnosis he accepted it. Not without pain. Not without anguish. I don't mean he shrugged and said, "OK, I have an incurable disease that will rob me of my life piece by piece. I'll just happily embrace each day as it comes." But for him it helps the world make sense. He did not lose his dl because he is a poor driver. He lost it because quite beyond his control Lewy has slowed down his response times to the point where he is no longer a safe driver. He keeps making mistakes not because he is a dumb person but because Lewy causes him to forget. We can joke about the tricks Lewy plays on us. I can assure him that no matter what happens I love him without condition and that Lewy is our common enemy.

The diagnosis gives Coy a framework for dealing with what his happening in his life. Denial gives my mother a framework for dealing with her burdens. It is wonderful if caregivers and other loved ones know the patients well enough to respect their individual ways of dealing with life.

There are several discussions on this forum about whether or not to use the "d word" (dementia) with our LOs. I knew my dad would freak out if I said it to him, about him, so whenever he asked why his legs didn't work, or why he forgot certain things, or whatever, I'd tell him that something was going wrong in his brain. I suppose that could be considered denial too, but if not using the d word helps, then I'm all for it!
I hope you had a good 4th Jeanne & everyone! Lynn

I'd like to have a word with whatever heartless person thought the word "dementia" was appropriate to losing one's life bit by bit. I have requested my hb's healthcare providers to avoid it at all costs. They use the word "syndrome", which has far fewer negative connotations and which does not provoke the immediate denial reflex. It's bad enough what is happening to our LO's. They should not have to hear a word which sounds like "demented", and really, neither should we.

My MIL used to pity the "poor souls" in her assisted living home. We avoid using the D word at all costs.

timely discussion…

denial? dementia? depression?

how can a functioning brain, whose sole purpose is survival, admit to itself that it is not to be trusted?

I am exploring…I am letting my brain explore….

I am in continual soft conflict with myself….

I go for a day or so thinking that I am able to do something I used to do….then I realize that I really can't count on myself to be able to do that…

then I say why not? try it anyway? then I forget about it for a few days….

then I am thinking about something totally different….

I don't particularly dislike the dementia word….it is what it is….I think it is good…for me….at this time….I know what is…is…today…at this moment…

I don't like using it with people who don't know the 'whole' meaning of the word….

I think it has the effect of dismissing me as an individual…nada….nothing…a brain that can't be trusted….ever….

but…..we know that isn't true….a brain with dementia might be trusted sometime….

SO…………………………..

what a difficult thing….

since all the brains are not affected in the same way…could it be that 'choice' is one of those areas of the brain that is not even available to be used?

………

I am beginning to realize that I am going to have to have people around me that are willing to suspend their reality for mine…

don't expect normal from me…..help me deal with it…..not change it….you can't fix it….

Eloquently stated, Craig.

When my dad was in his last months, the times he was lucid, I'd ask him for advice or information about something from his past that I knew he was likely to recall. It helped him feel important and needed, and I'd draw on his strengths when his communication and memory were working somewhat OK. It made some better moments for us during a very difficult time. Lynn

Craig, you are still very articulate, especially considering the very abstract nature of your subject!

I think that if I were in your place -- still having more lucid moments than confused ones, still able to continue many of my former activities, still "myself" in my personality and perceptions, I would want to surround myself with people I whose judgment I could trust, and whom I could trust to value my best interests.

One of my step-daughters comes to mind, and one of my sons (if he can get past his own tendency at denial). If they said to me, "Mom, we don't think it is safe for you to bathe when you are alone in the house," I hope I could accept that because of my trust for them. And I hope I could build up that habit of trusting them even when Lewy interferes with my judgment.

Good luck to you, dear friend!

yes…I am fortunate?

I understand that I to have to pick those who will have the strength to do for and to me….

those things that my brain will be telling me are wrong….


so……………


I have to make the choice….now…..that you…..will make later…….

………..

I was just thinking…..

what is more natural…..

someone calmly walking to the gallows? or being dragged kicking and screaming?

what is more desired? by whom? for what different end? never twice the same?

"Do not go gentle into that good night.
Rage, rage against the dying of the light."
Dylan Thomas, 1951

I have been following this thread with interest.... My Dad does not seem to be fighting his LBD diagnosis of 2 weeks ago but I'm not sure it has sunk in. He told the doc at his neuro-psych eval that he did not notice any cognitive changes nor did he notice any tremor (< "but I've been watching for it" he said.....) He and I have talked about his tremor before and he said he thought he was doing it intentionally.... And Dad read an eval by his radiation doc (for upcoming prostate cancer treatment) that mentioned 'senior dementia' several times.... He even said to me, "That radiation doctor was questioning my 'mentation' in his notes. Did you notice that?" I did indicate 'yes' to that and pointed out a few little things that I'd seen as well.

Next week, we meet again with his neuro - who is great but very blunt and direct. I am thinking about sending her a note ahead of time to suggest that she NOT use the word 'dementia' but I'm not sure I would really be doing my former-newspaperman-father any real favors by doing do. I think he remembers that his mother developed dementia (specifics unknown by me) in the last year or two of her life over 90.

It seems Dad just lives hour to hour and without 'heavy' conversations I don't think he is even evaluating the future.... I'm torn with gently 'shoving' dementia in his face vs dancing around it. My husband and I are very direct and practical about things and it is not our style to not talk about the details of everything big or small.... But I certainly do not want to create and perpetuate undue stress and negativity.

Like just about everything concerning Lewy, I think the answer is highly variable, and you probably just need to feel your way through it. I avoided using the term dementia around my mother for the first six months or so after her diagnosis, only to discover that the diagnosing neurologist had used it, as had her primary physician. It did not upset my mother at all, and since that time, I have used it in explaining her condition to her.

Julianne

Isn't it interesting the power words have to evoke emotional responses, and how the responses vary so much by individual.

To me, dementia is just the name of a kind of disease, and it gets the same response as diabetes or cancer. None of these terms are fun to hear and the reality behind them is dreadful. But they are just clinical terms to me, and apparently to Coy. We use the term freely.

I think a term we would have a harder time with is senile. Does that make any sense? Not to me, but our emotional responses don't have to make sense.

One term I try to avoid with Coy is Congestive Heart Failure. To him that sounds so final. I've explained it to him a few times, but now I just refer to his heart condition. ("We're trying to limit your salt intake because of your heart condition.")

If a particular word bothers someone, there is absolutely no reason to continue to use it, in my opinion. But we have to realize that other people (health care professionals, for example) might not share our perceptions and might use terms we try to avoid. I don't think they are heartless. They just don't have the same emotional response to the words that a particular patient might.

You are so right, Jeanne, that the connotations of these terms are very individual. I also interpret 'dementia' in a clinical manner. And 'heart failure' really does scare a lot of people, even though CHF is very treatable, has nothing to do with 'heart attacks' and most people live many years with that condition. With Derek, we refer to the dementia as a 'problem with brain signals', which also explains his physical symptoms.

Thanks again, Jeanne. You always seem to be able to put into words what I'm thinking. I worked in the medical field for 35 years so I don't think the terms have the negative meaning for me that they have for others, and I've always felt that the more we know about the conditions my mom has the better equipped we are to deal with them. For me personally I like the word dementia better than senility but when my mom and I talk about her symptoms (like her choking lately), we always just call it her Lewy's. She also has diabetes, CHF, osteoporosis ( which has caused four different fractures in the past 4 years),melanoma and had a quadruple bypass 9 years ago, and so for our family this is just one more thing to try to deal with the best way we can. I will say that this one is much more emotionally draining for me personally as her primary caregiver, probably because I feel so helpless.