ELDER MUSIC: Variations on Take Five and Moanin'
Darlene Costner, Mending Well at Home

Dreading Dementia

More than once or twice I have complained here about how the media seems to work overtime scaring the pants off old people about Alzheimer's disease. There is more reporting about it than any other of the diseases of age.

So today's is hardly a new topic but circumstances change. Or, perhaps, it is one's perception that does the changing. One way or another, the thought of dementia feels different to me lately.

Here is a list of things that happened to me during a single day last week. Actually, it's a list of only the ones I remember. I'm sure you will appreciate the irony of that caveat in a moment.

  1. As I grabbed the broom from the laundry room where the cat's litter box also lives, I made a mental note to clean the litter box when I returned the broom. A couple of hours later, when I was again in the laundry room to drop some towels in the washer, it hit me that I had failed to do that when I returned the broom. Didn't even cross my mind.

  2. Leaving the house to go shopping, I took a stamped envelope with me to drop in the outgoing mailbox on my way to the car so it would go out that day. On my way home from the store, I saw the envelope on the passenger seat. I had apparently strolled right past the mailbox without stopping – even with the envelope in my hand.

  3. As I walked through the door of the supermarket I thought, “Oh, I should also pick up the local weekly.” I clearly remember saying that to myself. The next day I realized I had not bought the newspaper.

  4. I forgot to put detergent in a laundry load. Never did that before in my life (that I, ahem, recall).

  5. That Thursday evening, the fifth night of Hannukah, there seemed to be too many candles remaining in the box. A quick count showed that yes, I had missed one night of lighting them. I look forward to this eight-day ritual every year, it's one of my favorite annual things, I eagerly polish the menorah in the lead-up and I cannot work out how I forgot one night.

Thursday was not an isolated bad memory day. I could make such a list - and longer - on most days.

The reason I'm thinking so much about this is that although I've been forgetting similar such small things that require a functional short-term memory on a daily basis for a long while, they seem to be increasing recently.

I don't know that for a fact but it feels that way and for the first time, I'm worried or perhaps the more honest description is that I am frightened, scared.

When I first realize I've again forgotten something nowadays, I can't shrug it off. Instead, it's hard to breathe for a moment or two. Or, sometimes, my brain freezes – nothing there but pure fear bouncing around. I've never felt that way about aspects of being old before.

You and I, dear readers, have made many jokes in these pages about the kinds of memory mistakes that matter and those that don't. “If you can't find your keys,” we say in our laymans' certitude, “you're okay; if you don't know what they're for, you're in trouble.”

We invoke senior moments as another way of finding humor in our ageing selves but they contain, too, a bit of a chill, a sense of whistling past the graveyard.

I can't prove it but it feels like I lose a thought, on average, about once an hour throughout a day and that some of those intentions disappear within a single second.

It's one thing to half-joke, as I did in a recent blog post, about finding the “sweet spot” about the moment, with a diagnosis of dementia, to commit suicide before one's mind is too far gone to accomplish it.

It is quite another thing to wonder sincerely if the need for that act is becoming reality.

Part of me keeps saying, oh, you're just imagining this increase. Even when you were young, you found yourself in rooms wondering why you'd gone there. And then I think it's time for an appointment with a neurologist. Undergo some tests.

When I allow that thought, I'm paralyzed again, not quite rational for a few moments as I desperately reach for a distraction. As they have always said, ignorance is bliss and that seems to be where I am stuck for now.

Because who wants to know for sure this particular dreadful diagnosis.

Maybe I'm fine. Maybe I'm a victim of too much Alzheimer's talk in the media. Maybe I should not have attended that screening a few days ago where I saw Still Alice for the second time. Maybe I am imagining that my memory has gotten worse. Maybe I feel guilty for being remarkably healthy at my age when others are not.

Maybe these thoughts will fade away soon and I'll muddle along as I always have for lot more years. Maybe I'll forget I even wrote this blog post. (I don't even know if that's a joke.)

I'm not writing this because I want your advice or suggestions. I don't need medical references; I've done mountains of research. I am well informed on this subject and it is not out of the question that is what has got me into this uncomfortable spot.

What I hope in doing this today, I think, is that it might be useful to express what I'm feeling so some other old people who sometimes find themselves in a similar place know others of us are there too.

We are all presented with frightening things as we grow old – some rational, some not. But we generally don't talk about them out loud, not in a real sense of how it actually feels when we are alone in the dark with these thoughts.

Writing this brought to mind a delightful quotation from the recent book, Let's Be Less Stupid: An Attempt to Maintain My Mental Faculties by Patricia Marx, a long-time writer for The New Yorker and Saturday Night Live:

"Indeed, sometimes, when I look for my glasses while wearing my glasses, I think, 'My, my, it's going to be a very smooth transition to dementia.'”

Comments

The "sweet spot" is a real issue. The value of having close family or friends you see regularly is that they can be "gatekeepers" -- if they care about you enough and are brave enough, they'll gently suggest to you that something has changed, your habits and patterns are different and they are concerned. I worry about being too far gone to make a decision for myself--maybe not suicide, maybe just knowing the right time to see a specialist and make some plans if necessary.

Thanks Ronni, for making me feel better. Note that it took me a minute to remember your name, although I know it well. The only good news I can think of is that I'm too old for early onset Alzheimer's.

Well now I know I'm not the only one that does this a lot.
I sometimes think it's a question of focus. As I've gotten older, my mind is always thinking and philosophying on its own, so it's not "in" the present task. My mind literally has a mind of its own and the little "to do lists" don't enter it but briefly.

It is frightening. And it's hard when you're alone, with no one to give you feedback on your day-to-day behavior.

Dear Ronni, As you know I am your senior by 10 years and I definitely noticed the aging process speeding up in my seventies, as I was prepared to notice by, of all people, Dr. Phil, back when I thought he was worth listening to. That included many more of the memory moments you mention. Words--nouns and names-- are my downfall, but they usually come a few seconds later, just too late to fit seamlessly into the conversation. Misplacing paper items, mostly, is also a daily event. BUT I can still write, take pictures and sing (with printed words at hand) at 83, so I guess I needn't worry for a while yet.

Just before I read your post, I was thinking to myself (about myself), "yes, this aging stuff is getting real." In my case, for the moment, it is physical more than mental; the same level of activity that I've always practiced doesn't yield the same physical results. And it hurts, physically. Hmmm. How much alteration of my accustomed routine do I wish to allow myself? How much can I continue and with what modifications?

I imagine apprehending mental slippage is similar. And frightening. I try to know this too will come, may come. But knowing doesn't make it less frightening.

Two things assure me that I still have most of my faculties in tack.

!. Remembering to work on my own blog everyday
2. Remembering to read Ronnie's blog everyday

So far, so good.

I do those kinds of things all the time, and it's getting worse. It feels to me that my short term memory is going, which I think is different from Alzheimer's. I have a very hard time keeping things in my thoughts, and I'm all the time telling people that I had something to say, but forgot it. I do know that I am remembering some things, but I have to really concentrate. I'm also putting new stuff into long term memory, because I'm paying more attention to what sticks from day to day.

So far this hasn't troubled me too much. It's frustrating when I'm trying to recall something, but I feel like the game has changed and I just need to adapt.

A very timely post, since I had no idea what day it was when I woke up this morning, which made me think of all the other things that seem to have gotten worse with my memory. I've always tried to keep my fear of Alzheimer's hidden away, but my mother, her sister and their mother all started showing signs of the disease around age 75, and, as I get closer to that number, I worry more that my ordinary forgetfulness is something more serious.

I have asked my friends to let me know if they notice a change in me, and I hope they will. I just hope for the best.

My husband, who was from Alabama (and who had Alzheimer's for nine years before he died) used to say that when he was growing up in the South, certain people used to walk around cemeteries, even if that meant walking much farther, because they were afraid of "haints." I think for those of us over 70, dementia is our worst haint. And I agree it's worse if we live alone.

I'm writing a novel and faithfully doing the New York Times crossword to stave it off as long as possible.

Like you Ronni, due to my personal situation with my spouse, I consider myself almost an expert on dementia. And I believe that what you & the rest of us are going thru is just something that comes with aging. My cupboards are full of post-its reminding me of things that need to be done & I have a desk full of reminder notes. That's very helpful for! me & reduces my stress. I even have the on the dashboard of my car

Concern should come when your decision making is impaired. Also of all things, a change in gait (like duck walking) is a very early sign of dementia. The other is the presence of delusions usually about friends or neighbors or even family.........I called it paranoia, but the psychiatrists call it suspicious behavior..........just a softer way of describing a terrible symptom.

The trick is not to get to upset about it. I use a meditation tape to stay focused & calm & lately every celebrity is into mindfulness which is I believe, very helpful to allay some of the stress. Hang in there. And like Bruce, I just go with the flow & read the paper & then your blog & the elder stories. Dee :)

Might be, might not be.

But the important thing is not what happens after dementia takes us, but what we did with the mind in all the years before then.

You have done far more than most, and continue to do so, to the great benefit of many others.

Referencing your number 1 (above), I've been meaning to clean the litter box for a couple days now, but keep forgetting--thanks for the reminder!
Yes, indeed, it is getting much less funny now. Thanks for commiserating with us!

"Indeed, sometimes, when I look for my glasses while wearing my glasses, I think, 'My, my, it's going to be a very smooth transition to dementia.'” Great phrase and great sense of humour.

I'm relying on friends and family to tell me if I'm getting more out of hand than usual. My biggest frustration is noticing in the last year that I cannot hold a thought in my head to process it on to a particular subject - rather like reading a page in a book and an hour later having no recollection of it. I've always been a big reader and nowadays cannot remember books I've read nor the writers. This is a big deal for me and I must own up to being a little bit worried.

I can't tell you how much I appreciate this post Ronni - most of my friends refuse to even talk about aging, or that next big thing - dying. It's lonely when we cannot share the dailiness of this time in life. And, yes, also our fears. This blog is my community and a couple of friends who work up the courage for the conversation from time to time.

I'm hoping if I miss that first sweet spot, there's a second - that moment/time when I no longer know what I don't know. Until then humor helps and meditation becomes more important. Again, many thanks...

I just turned 60. What I've noticed is what I've been calling "cognitive trips." Small memory lapses that just didn't happen before but, then, there so much I'm tired of doing that I've been doing all my life such as, calling a 1- 800 number and being put on hold for, you know, forever, then not getting the issue I called abt resolved. I just don't want to remember to do those sort of things.

What really scares me, is mental illness. Both my parents had some form of it and I am afraid of that happening to me. My mother is 89 and really seems to have slipped into dementia but to me, she doesn't seem that much different then she has been all my life. Just more exaggerated. Which makes me wonder, if, in some people, "dementia," is really an open display of mental illness that they've suffered from all their lives and can now relax into.

Anyway, in thinking about this, I think I hold my mind too rigidly because of my fear of mental illness – – which is, of course, dementia. And so, my brain gets tired… and needs a rest! At least, for now.

Many decades ago I read a book that I remember only one thing from now, and that's this quote: "order and perfection are not synonymous -- all that's ever needed is 'good enough'." I'm now applying that to pretty much everything in my life, including cognitive processes and it may be helping. I think it may be relieving the stress and worry about not remembering all the little things that come up daily, or the strange little things we sometimes do like not adding laundry detergent (when I was in my 20's with my first baby I forgot to add the tuna to the tuna rice casserole but have never done this since). Many of the things you mention are not things that are part of a daily routine, but are instead, digressions from a focus or task in progress. Those are easy to miss for people of all ages, especially with all the sensory competition in today's world. It would be interesting to know how people in simpler environments, like a monastery or convent, with very rigid routines, find themselves doing with this sort of thing.

To sort of answer my own question, one of the first and most exhaustive studies I ever read about dementia/Alzheimer's was one involving nuns. What I remember most about that study is that the nuns were asked to write essays when they entered the convent, and the author found a correlation between those whose language was the richest in those essays and the least amount of cognitive decline and age of onset. Ever since reading that, I've used it as justification for reading as much as I do. That and keeping daily and weekly "to-do" lists help keep me on track, but I still have some of the same sort of glitches you describe. I suspect most people do.

So far I've attributed forgetting to mail a letter, pick up an item at the store, etc. to the same forgetfulness we all have. It's a small thing, we got distracted, we weren't focusing on the issue, etc. I'd be more worried if I forgot things like today is my birthday or my son is taking me out to dinner tonight. I do fret a bit when I'm trying to recall a name, a title, a word that I know I know but can't bring to mind immediately. I attribute that to my solitary life and not having had occasion to use that name or word recently. I'm assuming the problem would not exist if I were still at an office talking around the water cooler every day.

My biggest recent concern was whether I'd develop the infamous "chemo brain" this summer, but that didn't happen. Or if it did, I didn't realize it and the kids were too nice to mention it. Going forward, I figure that if I don't remember I forgot, it won't bother me. But it will drive the kids nuts.

I will be 71 in a few weeks. I have been worried about dementia in some form for years. I remember when I was young & we went to visit my Grandmother in a home, and she didn't know any family members & how scary that was. It is a real concern about aging for many people. I try to keep active, both physically and mentally, and hope for the best. I make lots of notes. When I am running errands, I always make a list of where I need to go & what I will buy there, or drop off, or whatever, and I make the list in the order of the tasks to be done. And believe me, I do refer to it! When I cannot remember a name or a word, I blame it on the fact that my brain is so full now, that it takes longer to retrieve the information. Remember, if you were 50 years old and had a day like that you wouldn't think twice about it, and just say you should have gotten up on the other side of the bed!

Thanks, Ronni. It does help to be reminded that we're not alone in this great fear. After watching a program about it recently, I obsessed for a few days. When I talked to a friend about it, she said "well, if I get the diagnosis, I'll make arrangements for my care." I'd like to be that calm and practical about it because the reality is that we have no control over it and if we worry about it now, we are really "suffering it twice."

I quite honestly sometimes use to wonder, and not to make light of Alzheimer's in any way, if wandering off into 'la-la land' wouldn't be a relief from the otherwise physical and mental discomforts that old age sometimes hands out to us to deal with. But further research into the matter of Alzheimer's being some sort of safe harbor from pain didn't bear out. In fact, it was noted that dealing with pain might be worse for an Alzheimer's patient because they normally lack the mental capacity to even communicate the fact that they are experiencing pain. Now that's even more scary.

To a lighter note in line with your eye glasses experience. Within the last year I have done two things of note along those lines. First I spent about fifteen minutes going thru my closets and dirty laundry looking for a shirt which, turns out, I was wearing at the time. And secondly, one morning I waited who knows how long for my breakfast toast to pop out of the toaster only to realize eventually that I had never put the bread in the toaster to begin with.

For those who have done the research, is there a scan or MRI available to definitively diagnose Alzheimer's?

I personally want to know as soon as possible if "it" is there. Being a type-A control freak I have always had the need to maintain (at least the illusion of) a sense of control over my little world.

if testing for the big A is available and reliable, I will sign up tomorrow. That way I can move on to some other body part to obsess over...

Interesting the variety of ways we process this individually!

Pamela in NC...
There is no test for Alzheimer's or any other kind of dementia. Physicians use thorough medical workups along with various lab tests, symptoms, neurological exams, even genetic tests to come to an informed conclusion.

That it cannot be diagnosed like a cold or cancer is part of the fear and dread.

I'll be 79 soon, and especially since I was involuntarily retired from my job about this time last year, "glitches" seem more noticeable. (That may be partly because there's more time to worry about them!) However, usually I can still compensate. "A place for everything and everything in its place" helps, as does making a grocery list (even if there are only 3-4 items, I'll forget one if I don't).

The very idea of dementia is terrifying, and I would never want to put my family through that. Well-off patients can afford professional in-home help or pricey memory care facilities, but what's in store for us ordinary folks who can't begin to afford such care?

No one in my family has had Alzheimer's as far as I know, but that doesn't mean I'm not worried about it. If it does happen to me, I definitely hope I'll retain sufficient awareness when the time comes to make my exit and that I'll be able to figure out how to do it.

Fox News. It typifies the fear, the alarm, the "if it bleeds it leads" scare tactics used by nearly all the Media. Alzheimers is shoved into our faces all the time. Books, TV, movies, magazine articles, etc. No wonder we have Alzheimers as a "companion"! Ronni, you subjected yourself to two sessions of "Still Alice", right? It raised fear and a near-obsession in your mind. Not unlike teens watching horror flicks for the scare and the tingly sensations.
Ronni, you are obviously crying out for some peace of mind. Any chance that you can employ the attitude of Carol Rowland's (she's posted above) friend? Something is going to eventually 'get' all of us. As her friend says, "- - why suffer (death) twice?". Let's all stay busy, both physically and mentally, and enjoy this precious life. While we have it. Cheers!

As a follow-up to my previous response, I volunteered for an Alzheimer's study at a major Alzheimer's/Parkinsons research center near me several months ago. Because of my family history they really wanted me, but when I found out that if I was accepted into the long-term study, that meant I had the Alzheimer's marker. I thought about it for a long time, weighing the pros and cons, and finally decided I didn't want to know.

We are schooled in the notion that we must "function," and that's what scares us. To me, the most frightening thing, however, is the loss of "self." I have seen this in the several Alzheimer's victims I've known. That has to be terrifying.

After retiring, I picked up a little job collecting fees for a homeowner's association where we lived. Two different individuals developed Alzeimer's, but it happened so fast I really did not notice significant changes until they became very dependent on others. One could no longer write any kind of check. The other could not count out cash that came anywhere near the actual fee.

Both experiences frightened me. Perhaps the worst feeling was that I tried and tried to help them with the fee tasks, and it was impossible to help. However, I came to realize that both individuals seemed to continue to enjoy their lives, although their activities hardly resembled what they had done for many years.

I don't now that my limited experience with Alzheimer's victims yields any great truths, but thought it might interest some TGB readers.

I'll be turning 72 in a couple of weeks. Yes, dementia scares me. Maybe I'll write another comment later today going into my feelings. But, right now... Jim, I've noticed my short term memory getting worse, too. One thing that I've found helps, is understanding that we actually have two short term memories, not just one. Maybe more, I don't know, but at least two.

One is mainly visual, and for me that's the one that always used to be primary, and is now deteriorating. I'd look hard at something to fix it in my memory. That's no longer reliable, which is disconcerting.

But... the backup is auditory. I've discovered if I need to make sure I remember something, even from one room to another, it helps enormously to whisper it to myself. Even under my breath, even sub-vocalizing will do the trick, as long as it's something experienced by the sound-related part of my brain.

Just recently, it hit me... so THIS is why old people often mumble to themselves: it works!

My mom died of Alzheimer's -- "profound dementia" is the cause of death listed on her death certificate, and we had a brain autopsy done, and the indications were Alzheimer's. She was in a nursing home for almost six years. And yet, it seemed to me she still found life worth living. She couldn't walk, but she could get into and out of a car, and she was surrounded mostly by kindness. The staff gave her towels to fold so she could do something. Her lucidity was clearer some days than others, but she could make and enjoy jokes.

I'm not quite sure of my point here, but I think of how much I enjoyed my mother even when she was suffering from profound dementia. I enjoyed reading to her; I enjoyed taking her for rides; I enjoyed telling her stories of her life, and she loved hearing them. On her 90th birthday, she managed to communicate her thoughts: "The trick is to stay alive. While there's life, there's hope."

Again, no point, no moral, and no position. Or maybe this is my position: that what I saw is that life is no less valuable, at least to some people under some conditions, even in a nursing home with Alzheimer's.

Thanks Ronni. Stuck in my brain after recently re-viewing the Glen Campbell special is the time in the doctors office when they showed him the brain scan of healthy brains vs. his which had the definite "plaque" indications. I'm wondering that if one were tested for the marker and had a brain scan too, perhaps these would provide at least a hint of current status and possibly what's to come?

I struggle to pay long-term care premiums and this info would provide at least a small measure of comfort if such results came back negative. I may have to drop the policy at some point if the exorbitant premium hikes continue. Things can change in the blink of an eye, but it would seem logical to have some way to provide folks with a baseline evaluation. We do it for most other critical health functions, so why not this too?

I watched "Alice" once and agree with the above poster that at age 67 I can only say with certainty that I have escaped the Early Onset diagnosis...

Now on the other side of 90, I know those fears all too well. Maybe there's an upside tho. Some things I would just as soon forget.

Nice to know we're in good company! When and if we get dementia we will not know ; so, no reason to fret.

Thanks for your honesty on this difficult subject Ronni. One of my problems is remembering where my car is parked. I have learned to consciously focus and use landmarks (not the car next to mine!) to find my car.
I aspire to be a person who accepts the good and bad in life with grace. But honestly, I pray that I will hang on to enough of my mind and a shred of my dignity. Most importantly, I want to spare my family the devastating effects of a prolonged death with dementia.

The amyloid plaques and tangles can be visualized on an MRI and also brain atrophy which can indicate various dementias. My husband had severe atrophy for his age when he was in his early 60s and he was still functioning fairly well. He is now 74 and when I look back I understand what was going on back then. It is very subtle and occasional in the beginning. He was just diagnosed with Lewy body dementia/Parkinson's. The difference between Lewy body and Alzheimer's is that with A.D. you loose your memory. With Lewy body you make poor decisions, have problem solving difficulties and lose your executive skills. He also has multi-factorial gait issues and is wheelchair bound. Also with Lewy body as it gets worse the hallucinations are horrible and any medications throw him for a loop with an increase in the hallucinations. Any changes in routine also upset him. This is further complicated by the fact that he had an aneurysm when he was 51. He is now in a memory care unit and that is enough to scare the most stable of us. I think that there is so much in the news and in literature that we are constantly reminded and it causes a level of anxiety that every time we forget something or can't think of something it just makes our anxiety worse.

Mia, I am so in agreement with you--including about where my car is parked! I try to make sure I "set" the location in mind as I get out of the car. I, too, aspire to accept the good and the bad, but I'm afraid aspiration often falls short of matching reality in my case.

Although I'm not yet ready to make my exit, I wish there were a predictable, legal way to do so when the time comes--short of a lengthy, dehumanizing, painful terminal illness, that is! At least I reside in a death with dignity state, which is a start.

I used to move about from one task to another and back and have no problem with where I had placed a cup, a pen, a pair of glasses. I now have to concentrate and make a mental note of such actions, or I get to traverse the house two or three times to find that which I have placed somewhere. Just a few months ago I heard myself being described as having an "eagle eye" .

I have for some time, "located" my car when I parked it, both for being able to remember the area, and to find it in the canyon of SUVs and monster trucks. (I drive a 2003 Prius, so I also try to find a spot I can drive forward from rather than try to back up)

I have always been a detail person (and received a lot of ribbing for that over the years) but the other day I bought cough drops that were not the ones I wanted because the store brand now has the same color bag as the ones I prefer.

Today I went to look for my aluminum step ladder in the garage, looked at the
dolly that had all my broken down cardboard boxes (readying them for recycle)
and thought, well, I can't get to the ladder. I found a chair to do the job. Then went out to the garage, drove to the store, and only as I raised the garage door to come back into the garage, did I see the ladder which was within an arm's reach as I got out of the car. (I do not think that kind of confusion has ever happened to me before and it is a bit scary to me.)

Thank you Ronni, for your personal honest, open discussion regarding aging. selves. The worry, fear, and uneasiness of such changes is something to ponder.

Your blog post was reassuring to me Ronni..It's nice to know I'm not alone when it comes to forgetting little things.

It's also important to remember that most people forget little things, especially during the holiday madness. Not 2 hours ago my 40 year old daughter came into my apartment (part of the house we all live in) and said "Have you seen my Prius keys mom?" . Since she leaves them on the buffet by the front door I assumed she had looked there..but she hadn't and there they were-sitting in the silver bowl she and her husband keep keys in.

She thought she looked but she hadn't..where she looked was the hangar that I keep my keys on. Weird ..I don't drive the Prius.I can't figure out how to drive it and get frustrated when I try..give me a stick shift american made car any day please.

As for the letter-I've been carrying a sympathy card around in my purse for a week, frequently forget my shopping list and often forget to buy things on the list when I do remember it.

It's part of life.

Happy Hannukah to you on this most holy of seasons..

Elle in Beaverton

I'm not yet 60, but i also forget many things. Sometimes my brain just STOPS. It's always about something that isn't very important. anyway. I try to keep humor in the equation. My mother had Huntington's, so my mantra is "I don't have Huntington's". As someone mentioned, maybe we should be okay with the good instead of searching for the perfect. And, i have to say, i haven't met a perfect person yet! (The grand kids are pretty close!)
Loved the quote at the end!

Hi Ronni - yes fear is certainly the cause for the 'paralysis' that happens after a glitch - that sense of "Oh no - not me" - so many things that everyone has mentioned are just a fact of getting older aren't they - but there's always the sense of that 'elephant in the room'.
Thanks for bringing it up and let's just keep hoping that if or when we should need it the "sweet spot" is easy to find and use! I loved the 'easy transition ' quote - a smile always works for me.

Gads!!

So much can I relate to - thanks for this, Ronni.

I think everyone covered what I'd say. And I'm all for a positive effort and humor thrown into the mix. There's going to be a whole lot of us talking, supporting, commiserating and coming up with ideas and solutions - this blog does the work of bringing many into the same place, with our fears and all.

Good to be a part of this.

Ronni, thank you so much for discussing this topic. I am 59 years old and very worried about the chance of getting some form of dementia. My paternal aunt died of Pick's disease (frontotemporal dementia) and most of my father's aunts died of some form of dementia. My mother, who died at 80, had moderate dementia; her mother was completely demented at 87, and her older sister is still living and has moderate Alzheimers. My dad, at 82, is a real pistol but has only mild symptoms of dementia. I write all of this to say that I worry that I'll become demented and a burden on my children - neither of whom are in the best condition to care for me (though willing). I've had all of the forgetfulness the other people here have mentioned, along with repeating stories, having trouble remembering days, names, and faces. My husband says that because I'm an obsessive bookworm I should retain my senses for some time to come. But I just don't feel like myself.

After an inner argument about whether to get screened, I finally decided to and then was turned down by the local university neurological department because I "wasn't old enough". I thought they would have accepted me because of my family history.

I've struggled with inattention and distractibility all my life as I have moderate ADHD, and time does not seem to have moderated it. Because I can't investigate my symptoms, I try to allay my fears by telling myself it's just the same old ADHD. But what if it's not?

Thank you Ronni for your honesty about the fear that hovers close after a certain age. And what a smart move, to ask that people do not give you advice! A rich and heartfelt correspondence has resulted. I'll seize on the "don't die twice" aphorism for my bad brain days in future.

What Simone said.

Plus lists, lists, lists.

My mother-in-law made lists and placed them on the mat inside her front door.

"Duck walking?"

Oh. No.

Do you mean to tell me that all my Chuck Berry moves are now verboten?

Geez, here I was thinking I can still shake a tail feather.

(slinks off into a dark room)


Don't worry about not adding the soap to the washer. I once ran mine without the laundry. When I went to put it in the dryer I found an empty washer. So I refilled it, added more soap and added the laundry. Would you believe I heard the dryer buzz a half hour later? I actually dried my "phantom" load of wash. That was 20 years ago and I'm fine, but I must have been preoccupied with something that day.
An added thought - I'm in the process of switching to a new blood pressure medication because of side effects of the old one. Already I can tell a huge increase in alertness. Most older people are on medications.

Alzheimers is diagnosed through tests given by a neurologist. My husband had been unable to do bills, calculate a tip, confused about which day of the week it might be, repeated the same questions over and over within short spaces (10 minutes, 30 minutes) many times a day.
We went to a neurologist who administered "simple" tests, like drawing the hands on a clock, drawing a cube. I was amazed and shocked at what my intelligent, professional husband could not do. The neurologist then proceeded to monologue at us for about 15 minutes, during which time he used the word "Alzheimers" at least 15 times, in a pointedly heavy handed way, so we would get the message. I got it, but my husband doesn't remember this. He thinks the doctor said he was fine. I am in my 60's and my life will now be that of a caretaker. Game over.

Comments above to the effect that Alzheimer's will be easy because you won't know what's happening seem deliberately naive. Do you really want to survive in a state where you don't recognize anyone, where you have no control over your bodily functions and have to be cleaned and fed like an infant for years and maybe decades? Even if you don't know what's happening to you, your spouse and children will have their lives eroded and diminished for as long as the medical profession keeps you alive. The financial costs will be huge, but pale in comparison to the emotional costs on those close to you. There has to be aid in dying for dementia patients and people need to make their wishes known to this effect before or as soon as they are diagnosed.

Just chiming in to say that like you, Ann Watkins, I am 59, and come from a family in which my mother (at 83) is progressively more and more demented. While her mother died at 80 in a hot bathtub from heart failure, she was also progressively more and more demented. My sisters and I are vigilant, but know very well that sense of Oh god, another slip in the mind!" I can almost feel it, like tectonic shifts. I just read Being Mortal, by Gawande, I hope he writes a book about dementia to follow up on mortality. I think it's important to try and tell our loved one what we in our full selves hope for any deteriorated selves we come to inhabit.

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