Alzheimer’s … How Soon Do You Really Want to Know?
Today’s MedScape email had an article that caught my eye: “New Tool Predicts Long-term Dementia Risk.”
That subject is intimately up my alley. My mother passed away 9 years ago last May after a 10 year struggle with Alzheimer’s. Well, perhaps struggle isn’t the right word. There are different ways to approach the knowledge that your brain is slowly being eroded by protein deposits which will eventually leave your body unable to continue even the most basic functions. Some people fight it, kicking and screaming - bitterly - all the way into the enfolding darkness. Some bravely steel themselves against each realization of another memory past recall … knowing that such fright will eventually begin to decrease as they lose more and more awareness of the present moment. Others … never see it coming. My Mom was one of the latter - she never saw it coming.
The first few years were sad - and difficult - as she tried to understand why we didn’t want her to be alone at home anymore, and why we tried to control what she was eating. She became an ice cream and cookies kid, and nothing, nothing, could make her eat a balanced meal. Even with the high carb diet, she still remained tiny, a hundred pounds or less, and up until she could no longer control her body, she sat cross legged like a Yoga practitioner at every opportunity. So do I … but not as effortlessly as she did.
After a while, she no longer asked difficult questions, but became like a little child. He heart lived in her eyes. Trust, anger … all right on the surface. When she could no longer speak, I would sing her favorite French songs to her, in hopes of … I don’t know what. A spark of recognition? I always wondered if, on some level, she recognized the words and tune, and remembered what they meant … if perhaps what she had loved so deeply for so long had the power to remind her of who she was.
Did we do the right thing? Did my brothers and I err in choosing to allow her to slip into the darkness unaware that it was claiming her very soul as time passed? Should we have told her … “Mom, you have Alzheimer’s. You’re going to slowly lose your mind … ”
The ten long, agonizing years of her illness left us all drained - emotionally and psychologically exhausted. We mourned her passing - long, long before her body left us. And the guilt … oh! The guilt of no longer “recognizing” this empty shell as the person who gave us life, nurtured us … taught us the reality of warmth and love and caring … was always there for us … always understood, always tenderly nudged us onto the proper path. When she finally passed away, we cried … I’m not sure whether it was from the grief of losing our mother, or from the sheer relief that if souls do indeed exist, hers was finally freed from the empty husk which had held it prisoner for far too many years.
And so we come back to this “new tool” which helps predict the likelihood of dementia.
Who benefits from such a “new tool” for detecting Dementia earlier in life? The patient? The family? Does it help to know that, with a 95% certainty, your chances for Dementia are almost 2 out of every 10 people if you end up with a high score on the test? How would you feel if you were still 30 … 45 … 55 when you discovered that you have a high score? Would you become frightened, depressed? Discouraged? Wondering when, if it would hit? Would you strive harder … or would you just give up? Would you want to know?
Although there are claims of medications which help, I’ve heard a lot of mixed reviews. On Monday, Dr. John “Crippen,” of NHS Blog Doctor, wrote the following:
I have yet to have a patient who has been helped by Aricept. I think this may be a drug doctors use to treat themselves. We are not very good at telling people that there is nothing we can do to help.
So … if it’s inevitable … and incurable … and knowing earlier will not give you an advantage, why would you want to know? Like knowing the hour and manner of your death … why would you want to know?
Not a day goes by that, when I forget something, I don’t automatically ask myself: “Have I got Alzheimer’s, like Mom?” Nothing has the power to cause my gut to clench in fear like the thought that my body could survive without my mind … leaving my loved ones with the emotional upheaval we experienced with our mother. If I had Alzheimer’s or Cadasil … would I want to know? Would I want to know now … a decade or more in advance? Would I want my family’s love for me and interaction with me shadowed by such a nightmarish knowledge, dimming the joy of the moment needlessly?
This isn’t like cancer … or a heart attack. Those will usually steal the body away before the mind goes … or at least, the lack of “personal presence” is mercifully brief. Dementia steals the mind from what can be an otherwise healthy body … and the body can live on and on, years of mindless existence …
I can accept - almost unflinchingly - my chronic kidney disease and my hypertension. Even on dialysis or in ESRD, I could maintain my dignity. My hypertension can be pretty intense, and I have a feeling that if I were to have a stroke, I would go quickly, like my Dad. He lived every moment he was given … until very few hours before he died. He didn’t fade like a slowly dying ember into an ever deepening darkness that would steal his essence long before it would take his life; he was more like a bright flash that gives clarity and joy to everyone who sees it, and then suddenly goes out, leaving you with a pervasive, wistful afterimage.
I’m aware that, according to that “tool,” my own chances are moderately elevated. But I knew that already … because of my mother. Knowing has not improved my quality of life, but rather has added a dimension reminiscent of waiting for a second shoe to drop. And each time I wander into a room, and forget why I’m there … the awful questions begin.
It’s odd … how we can be so quick to focus on the very questions we don’t want the answers to …
I think, perhaps, it would be best to save the answers to those questions until there arises a particular need … or like we did with my Mom … save the questions until they answer themselves.
August 3rd, 2006 at 5:35 pm
I can’t comment on this right now. Tooooooo close too the heart.
*hugs* mmmmm nope ..that’d make me cry …*handshake*
BA meeting at my place…head for the mountains. I have your grateful deads for dinner ….
August 3rd, 2006 at 6:05 pm
Pk, I’m so sorry. I thought of both you and Cathy as I wrote this one. *comfort* When you’re ready for the hug - let me know.
Heading on over for the meeting!
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August 3rd, 2006 at 6:45 pm
Timely. I just got a call from my brother, asking if there were such a test. He and I are watching our mom descend through the disease, and it seems he’s had the same thought as I: if you could tell it was coming, and if you could find the perfect time to intervene on your own behalf (putting it as delicately as possible), would you? That’s the impossible part: seeing your future and picking a time….
August 3rd, 2006 at 7:26 pm
Dr. Schwab, first of all, I want to say that I’m very sorry about your mother. From my depths, I empathize. I hope that the worst part of her journey is as brief as possible for her own sake, and for the sake of all who love her.
Secondly, you seem to be very good at hitting on some intensely interesting ideas.
In your comment, you said:
Intervening “on your own behalf” … would be tricky, wouldn’t it? You’d have to take care of the situation long before things really became unpleasant, and as you said, it becomes an “impossible” situation - how would you go about deciding such a thing?
As far as waiting until things really are unpleasant, I’m against “assisted suicide.” However, as I was writing this post, and exploring my own feelings about the possibility of such an eventuality, I acknowledge that the idea did cross my mind.
All of this would make an excellent subject for discussion, although a rather uncomfortable one for me, perhaps because I see a possible chink in my own long held beliefs, at least in this particular case.
Thank you. You’ve given me something else to think about - yet again.
August 3rd, 2006 at 7:48 pm
Moof,
This was a tough post for me, as I am watching my dad in the beginnings of this disease. When he was diagnosed, he understood what it meant. As the past few years have passed, I am watching him become unaware of his forgetfulness, his stubborness, and the gradual change in his personality. It is hard for us, and especially for my mom to live with. Right now, he is doing well enough to hold a job and drive and what not. But, the little things are slipping. He goes for memory testing every year, which shows a decline each time. he is on Aracept, which may have helped slow the progression of the disease, but it certainly doesn’t help in the long run. If it were me, I would want to know….but I also know eventually, I would become unaware, just as I know my dad will soon enough.
August 3rd, 2006 at 7:49 pm
As a child of someone who committed suicide … granted, for far different reasons … I can unequivocally say .. there is not a good time or reason for it.
It’s just so complicated … the whole issue … and none of it easy.
August 3rd, 2006 at 7:50 pm
Hi Moof, this, as you know, is a touchy topic for me. I have had a hard time this week with Dr. Crippens post. But, I do understand exactly what you are talking about.
I did not tell my mom that she had Alzheimer’s. Certainly she knew, in early stage, that something was wrong, but I did not feel that it would be helpful for her to know what she had. She cried over the fact that she knew something was happening to her. Maybe we were wrong in not telling her. I do not know. As she progressed and became more and more effected, she no longer worried about “what is happening to me”.
Its so hard to know what to do. You just do the best you can at the time, with the resources that are available. If some where down the road, you find out that what you were doing may not have been of benefit, what good is that information then? It does no good to worry about the “what if’s.”
Thank you for writing this post…
((Hugz))
Cathy
August 3rd, 2006 at 7:57 pm
Pattie, I am sorry. *hugs*
Moof, we get test results next Friday.
Right now the only thing I can tell you is that the neuropsychologist on Friday and Monday Morning was treating her like a highly intelligent person.
Monday afternoon, he made sure she knew which direction to go to the elevator. Wednesday afternoon when I took her back in, he asked if I had a cell phone because he wasn’t sure about the timing to finish the test. I said yes and he asked for the number. Mom rattled off the number and he didn’t even look at her, but looked at me questioning it ..”is that right?”
He gave her instructions at the end, made her repeat them back to him. Then gave me the same instructions and verified that I’d be going back to the neurologist with her. Told her not to go to doctor’s alone.
sigh
August 3rd, 2006 at 9:23 pm
I am sorry about your mother. It’s hard to watch someone you love and look up to change in this manner. This was very imformative and heart felt.
August 3rd, 2006 at 11:30 pm
Cathy, we were posting at the same time evidently.
A few years ago …Mom was right with me saying What is going on. Now, she’s saying, nothing is wrong … I’m fine, I’ve always been this way.
Evidently, when I’m not around …rather …um ..vocally. Suddenly she sees me as advesary instead of advocate.
I’ve spent years trying to help her with her health care, and now quite suddenly, she’s convinced I’m trying to convince everyone she’s not ok. When in fact … I’m quite terrified over what’s happening ..and almost everyone can see it.
Only a couple of people don’t see it, and one or two think it’s just because she had 2 surgeries in the last year. One other one thinks it’s ‘normal’ at ‘this age’ ..her mother in law is 2 years younger and has less comprehension than my mom and she finds this normal. *gulp*
sigh
August 3rd, 2006 at 11:54 pm
I am sorry for the pain and suffering.
Is there an easy answer?
No.
I believe that I would find myself praying to God, asking him to lead me and guide me through it all.
Because there is no way, in my simple wisdom, that I would know the right things to do, or not to do.
We aren’t strong enough, or wise enough, to hold the fate of a human life in the palm of our hands.
To ponder such things seems difficult enough.
later…
August 4th, 2006 at 12:20 am
I don’t believe I would want to know if my candle were flickering
Certainly not if it were going out
surprise me.
Take me in the middle of the night with no warning…
August 4th, 2006 at 1:23 am
So sorry for everyone’s grief. If being forgetful is a tell tail sign, then I think I’m a good candidate for Alzheimer’s.
Such powerful image Moof. Thanks.
August 4th, 2006 at 8:11 am
Pattie, I’m so sorry. I didn’t know. Enjoy him while you still have him. It’s so difficult to see a parent with Alzheimer’s …
I think the progression is different with each person. The day my mother moved down to our town with my dad, I thought she was a “little forgetful,” but she was still able to get by well enough that none of us were sure. Only one week later, when my father had his stroke and died, it became very obvious that something was seriously wrong with her. There was a really sudden change - probably triggered by the death of my father, and her living in an unfamiliar place.
You want to be aware that things can go on for a long time and then change very rapidly due to an illness or a really upsetting event or set of circumstances.
There seems to be an epidemic of Alzheimer’s … I don’t know if it’s because we have such a large elderly population, or if it’s something else, but I can’t count the people I know who have struggled, or are currently struggling, with this nightmare.
August 4th, 2006 at 8:39 am
Pk … every time I think of that, I want to cry for what you went through. And now, I want to cry for what you’re going through …
These experiences have deepened you, and will continue to do so. Pain does that when it impacts with a willing spirit.
when the Potter shapes a new vase, He uses a lot of heat, and He hollows out a huge area on the inside of the vessel as He shapes it according to His own design. When it’s complete, all beautiful and shiny, He fills that big empty place with what He wants in there …
Hang in there Pk … you’re in good Hands.
—
Cathy, you’re right … there’s no reason to second guess ourselves. I think that we do the best we can when we’re faced with the horrible prospect of losing a parent to Alzheimer’s.
You say that early on, your mother cried over the fact that she knew something was wrong … that’s the nightmare, right there. I can’t imagine going through something like that.
While I think that if I had terminal cancer, I would want to know … all of the details … I’m not sure that I’d want to know if I had Alzheimer’s. One is just my body … and my mind would still be there throughout whatever time was left … while the other is just to awful to contemplate.
{{{ hugs }}} back to you, my dear Cathy.
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Peace Wanda … thank you for your very kind comment! Huge hugs!
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TJ, you said:
That is the crux. I’m not at all surprised that you were able to come into here and sum things up with the wisdom which I’ve come to expect from you.
Thank you, dear Heart!
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Wolfbaby … my dear … you sound like me. Although I second guess myself … question myself endlessly … it’s a question I don’t want to hear the answer to.
Thank you.
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Ipanema, thank you so much for your very kind words.
Thankfully, much of our forgetfulness can be blamed on fatigue, lack of attention … and everyday distractions. I know that some of my hypertension medications make me a little numb between the ears at times. So … being forgetful doesn’t necessarily mean the worst …
The image … yes, the image struck me powerfully as soon as I finished assembling it. It’s a composite of a fraction of an image I found on the internet, and some haphazard transparent colors. I knew what I intended to do when I made it, but I wasn’t prepared for the effect it had on me when I was done. I’m not always so lucky when I experiment like that.
August 4th, 2006 at 1:28 pm
Moof,
tag you’re it.
http://talesfromthewomb.blogspot.com/2006/08/tagged-by-unitelligent-design-book.html
August 5th, 2006 at 12:43 am
I’m sorry that you had to experience that. It sounds like you and your brother did the right thing - end stage Alzheimer’s patients no longer have short term memory, and seem to live only in the present - there would have been no reason to remind (and maybe scare) your mother of something she could not change. At this point medicine doesn’t have good answers for how to predict or really treat Alzheimer’s, which means it’s not really useful to know what one’s risk is beforehand… all of which just serves to remind us that nothing in life is guaranteed, and each day is and should be treated as a gift and a blessing.
August 5th, 2006 at 2:42 am
This disease is so difficult for everyone concerned. My mother-in-law had Alzheimer’s at the same time as lung cancer metastasized to the brain. She was in grief for her cancer over and over again because she forgot she had it. We were fortunate that her demise was swift.
My husband saw another person with the end stage disease and decided that if he ever learned he had the disease he would not want to go on living. I am not so certain as he is.
I have several friends whose spouses are in various stages of decline with cognitive loss. They have very different styles of coping. I guess how we do depends on our methods of dealing with difficulties. The progress at first is slow and people accommodate until suddenly they realize they can’t leave their spouse alone at home for anything.
August 5th, 2006 at 8:24 am
Wandering Visitor - thank you so much for “wandering” over to my site, and being kind enough to drop me a comment.
Yes, indeed. Thank you.
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Julie … thank you for stopping in and leaving a comment. What you’ve shared about your mother-in-law is so sad! I can’t imagine the torture it must have been for her … and for you and your husband.
You’re the second person to mention not wanting to continue through the disease … although I’m ambivalent about that, as you’ve mentioned you are.
I’m going to be exploring that issue in a post in a day or so. Difficult to look at … but important, I think.
August 6th, 2006 at 11:41 am
Moof, You have this great gift of coming up with posts with some moral / ethical dilemma at the core.
I sympathize with all of those above who have experienced first-hand what Alzheimer’s does to loved ones.
In spite of all the legal / moral / ethical / religious issues, I believe I would opt to go out on my terms while I was still being me.
‘Cogito ergo sum.’
‘Non-cogito ergo zero.’
August 6th, 2006 at 11:43 pm
Dr. Scan Man … I was wondering if you’d pick up on Dr. Schwab’s question …
How would you choose when? You wouldn’t want to be too quick … yet, if you waited too long - you could lose your chance completely.
Would love to hear what you think … that’s the part that Dr. Schwab called “impossible” …
August 8th, 2006 at 10:01 am
[...] If you could find out for sure you were going to get Alzheimer’s Disease, would you want to subject yourself to the screening? That’s the quandary Moof presents with rather emotional responses from her readers. [...]
August 9th, 2006 at 7:49 pm
Moof - The only thing more moving, maybe, than your post is the thoughtful responses you have invoked. Thank you.
August 10th, 2006 at 10:13 am
Thank you, Borneo Breezes. So many people are either experiencing this currently … or have in the past. It’s a terrible, nightmarish reality to have to face.