Monday, October 20, 2014

Thoughts on Dying and Dementia



If you had an option of knowing how and when you were going to die, would you want to know?  

We're all going to die.  No one wants to die, at least no one who feels they have a life worth living. But that is the one certainty in life, we are all going to die.

Some of are lucky in that we know approximately when we're going to die.  Of course some would say "Lucky?"  Yes, I say lucky because at least they can get their life in order and plan an orderly and, hopefully dignified exit.  

In a few weeks I'll be 73 years old.  I may live another thirty years.  And then I may die next week. 

I often kid my friends that I don't have long to live.  But to tell you how I really feel, I have no idea.  I would like to live several more decade.  However with one very important caveat, I want to live those years pain free and with dignity.

Bill, my 86 year old spouse, recently sent me link to an article titled "The Heartbreaking and Beautiful Faces of People Living With Alzheimer's Disease." In that article were a half a dozen black and white photos of men and women suffering from Alzheimer's.




The article stated "Alzheimer's disease is a far-reaching condition, one that rips through not only the lives of those who have personally suffered through the diagnosis bu the lives of family members, friends and caretakers who brush up against the illness as well.  It can transform a loved one into a stranger, tunneling through relationships,, memories and routines until he familiar slips bleakly into the unknown. A brother, grandmother or husband's descent into dementia becomes an identity in itself. They are no longer themselves; they are captive to disease."

This morning I prepared our usual Monday morning laundry.  Every Monday we was our whites.  I gather up my underwear and socks and kitchen towels.  Bill brings up his underwear and puts it on top of the trash hamper for me to add to mine when I do the wash.  I put all the dirty clothes in and start the washer.  Then I have breakfast.  When the laundry is done, Bill puts it in the dryer and folds the laundry when it is done.  




This morning as I was finishing my bowl of cereal Bill said "Why didn't you put my laundry in?"  I looked and saw his dirty under still on top of the trash bin.  I remember thinking when I put my laundry in that there wasn't much laundry.  Now why didn't I think to put his laundry in?

Folks, it's these seemingly innocuous missteps like this that cause me to think "Is this the beginning of my slip into dementia and Alzheimer's?"  And it's not just this one instance.  There are times that I completely forget names of people that I know, that I see every day.  I forget them.  And I find myself trying to hide these lapses of memory much as my recently departed best friend Bob McC. did when I realized something was wrong with him back in 2001 when I just couldn't get it through his head how to retrieve his mail from his computer.  I remember at that time saying to him "What's the matter with you Bob?  You have Alzheimer's?"  Of course I was joking but as it turned out he was showing the beginning stages of Parkinson's disease.  For the next twelve years I watch him slowly descend into someone I didn't know.  


Me and Bob before his descent

Bob and I used to ride around and sometimes joke about getting older and losing our minds.  We asked ourselves "What would we do if we felt we started losing our minds?" I'm telling you folks, the way Bob went was not the way he would have chosen.  It just snuck up on him.  

My biggest fear is not that I would die, we're all going to die.  My fear is HOW I'm going to die.  Of course I don't want the pain.  But perhaps even more so, when I die I hope it is with a degree of dignity.  I don't know exactly why I feel this way, Bill says that people with dementia or Alzheimer's probably aren't even aware of their condition, they're in such a haze.  I don't know about that.  But the one thing I do know, that every time I miss something so obvious like not adding Bill's dirty laundry to the wash, like I do every Monday, causes me to worry "Am I going down that path to losing my mind?"

Last night I went to bed.  I fell into a deep sleep as I often do when I sleep at night.  I take an afternoon nap almost every day.  Some days I have a solid two hour sleep.  When I go into those deep sleeps it's like I died.  That's what I imagine happens when you die, you just go into an unconscious state.  No brain activity.  That's not bad folks, that rest.  An eternal rest for sure but rest.  

We struggle all our lives to have a happy, loving and comfortable life.



 I've been very lucky in that I have attained a comfort level that I am very happy with.  I have some people who care for me and who I care for.  Of course there are others who couldn't care less about me and even some who actively dislike me because I exercise my free will and life my life as I please and not according to they have decided in their hubris that I should live my life according to their rules.  But for those few people who know the real me, the good and the bad, respect and care for me just the same; their love and understanding of me cancels out all their negativity. 

I don't know what the tipping point for me will be if I find those "lapses" of my memory more frequent.  I have a couple of tentative plans to short circuit any descent into the Hell of dementia.  As the article and the photos said:

"The disintegration of the inner life hits the heart of human existence.  Our whole life and heart is devoted to developing our personality. A confrontation with people who suffer from dementia can be frightening because their existence raises questions about our own lives."

Of course this morning's experience probably meant nothing.  But I am of that age where every headache in the back of my head I think "Do I have a brain tumor?" and every time my chest hurts I think "Am I having a heart attack?"  And then when I forget something so obvious as putting in all the wash I think "Am I losing my mind?"  I guess the real test is when I do the wash but put it in the refrigerator instead of the washing machine.


The fact is that both of my Mother's older sisters ended their lives in a dementia haze (one was 89 and the other 93 years old).  My Mother, the last six months of her live (she died at 86) was starting to slip.  She kept confusing me and my brother's names.  My father and none of his ten brothers had dementia when they died.  So maybe there's hope for me.  Maybe I'll still be writing this blog about my imminent death twenty years from now.  Now wouldn't that be something?


Mom (left) and her two older sisters - all suffered dementia - 2005


12 comments:

  1. Sometimes I think about being your age, Ron, which I will arrive at in about 20 years. I think that if, at that age, I were to find out that I had something that accelerated the approach of death, I would be disappointed, but also somewhat resigned, in that 73 is a lot of years to live, and I would not be looking forward to what happens to the body as it continues to age. However, I am now 52, and I notice that even at this age I have thoughts that something could signal the end: melanoma, getting hit by a bus, heart attack, etc. Now, granted, I am in great health and take great care of myself, but certain things sneak past all that. I would be devastated if, after finally getting to a place where I am living well and peacefully, I found out that I only had a little time left. So the point of this comment is to say that I think we all think about death after the age of 40, but I wonder if we worry less, or more about it as we get older. I do know that I want to have all my "ducks in a row", so that everybody knows what to do once I go. I am comforted knowing that my writing will outlive me and keep my life visible.

    ReplyDelete
    Replies
    1. Tony,
      I've probably said it before but I'll take a risk of repeating myself and say it again: If I died tomorrow, I will die happy. I am so far ahead of the game (of life). All my life I strived to arrive at the point where I am now. Every day I have is "gravy." I have everything I want and more. I'm in a stable and committed and loving relationship. My bills are paid. I'm relatively healthy (for a 73 year old). I even have the "bonus" of having that special friend with whom I am compatible on all levels, something I never expected to happen in my lifetime but here it is, even at my advanced age. Who would have thought? I feel as if I have completed all my goals in life. Now is my time to enjoy what I have worked and hoped for all my life before I go to the Big Sleep. Again, I have no fear of death. However, I am a little concerned over how I get There. That concern doesn't immobilize me but does keep my attention, especially now that I am witnessing others who are at the end of their life.
      Ron

      Delete
  2. Ron,

    What you describe is fairly normal for those our age and even younger. If you experience several such instances or for peace of mind, ask you doctor to administer the little dementia test they can give. Or you could make an appointment at the Swank Memory Center of Christiana Care for an exam. They have more comprehensive test to check for memory loss or dementia. This is where Lois went for tests earlier this year. They can also treat anything of that nature. Your insurance will cover it. I go there for caretaker counseling regularly. They are very nice.

    My Pastor's mother has advanced Alzheimer Disease. She is totally out of it and bed bound. He and his wife take care of her. She seems happy, thought it is very sad. I was fortunate that both my mom and dad were mentally sound up to the very end. My family for the most part has been free of that kind of thing.

    Lar

    ReplyDelete
    Replies
    1. Thanks but "no thanks" Lar. No doctors for me to tell me I'm losing my mind. What can they do? Give me a pill to slow down the progress of the inevitable? Oh perhaps a pastor to help me "get straight" with my Maker. There is no after life Lar. There is nothing. Once you die, once your brain ceases to function; your spirit or soul or whatever that life force that inhabits your body all these years is gone. Perhaps dispersed forever into the great universe but the personality that you have now, gone. I hate to break it to you Lar because I know how much comfort you get from your beliefs which is all well and fine. Whatever gets you though this life is fine with me. I'm happy for you. We each have to find our own Way.
      Ron

      Delete
  3. Some changes in memory are normal aging, some are not. I tend to agree, that a diagnosis that has no effective treatment let alone cure, is not something I am interested in. What we have to watch for is memory loss that interferes with living. My parents came home from going out to lunch one day and the lights had been turned off. My mother who had managed the household check book for 40 years hadn't paid the bill in three months. The bill would come and she would think, I just paid that and toss it. That was the first sign that her memory loss was interfering with life. They set the utilities on auto pay, and dad started paying the bills and life went on. I am on their account, if dad starts to forget to pay the bills, I will. As long as they remember to eat and take a bath, there is no reason to change the way they live. I am not even concerned about them remembering to take their pills, who cares at 87 if the pills extend their life another decade? Their being happy and comfortable is what is most important.

    ReplyDelete
  4. Well Ron - I have thought of death long before my age now. I thought about it as a teenager. I sometimes almost went into cold sweat - I really don't know what that is but an expression to say how freaked out I could get comtemplateing eternal nothingness.

    So of course I don't know what lies beyond - and I don't spend much time thinking about it. As Bob Luman sang - Let's Think About Living - is more what I'm into. But then I'm lucky like you - a good friend and good health. I just try not to take anything for granted.

    https://www.youtube.com/watch?v=sLAA9ioRsQ0

    Pat

    ReplyDelete
    Replies
    1. Pat,
      'what you're living now, this is it so make the best of it. Once you go to sleep for the last time it is eternal nothingness. Sorry to disappoint you. I don't take anything for granted. I try to make every day count.
      Ron

      Delete
  5. David,
    You're right that diagnosis isn't an effective treatment. I never saw the point in getting a diagnosis of dementia. What are you going to do when you find out, take a pill? I don't think I have a problem because I'm still remembering to pay my bills and do the big things. I think having a job and keeping active has a lot to do with my mental condition much like physical exercise helps the body to stay in shape. My friend Bob, really started to go downhill when he quit his day job then did nothing. As much as I like Bob, he did have a big lazy streak. He liked nothing better than to just lay down on the couch and read. I have a lazy streak too but I do like to challenge myself. Maybe it doesn't make a difference. Being happy and comfortable is what is most important as you say.
    Ron

    ReplyDelete
  6. Ron,
    Forgetfulness is a part of the natural aging process. You are usually ok if you remember why Bill's underwear was on top of the hamper, not that you forgot to look. Don't forget, your brain cells have been working for 73 plus years. Eventually a couple are going to fail.
    My father had Alzheimer's as did his brother and mother. He died when he was 86, his mother 85, his brother 89. From what I understand most are aware that there is something not quite right at the onset. Having seen close up the effects of Alzheimer's I can tell you that by the time the disease runs it's course it is doubtful that there is not much if any awareness on the part of the afflicted person. Interestingly enough my father didn't die from the effects of Alzheimer's but from neglect at the nursing home we had to put him into the year before. By the time he did die though he had pretty much become non verbal and had no interaction with other residents or staff at the home. He did recognize my mother and that was about the extent of his awareness. He died a somewhat painful death but the amount of time he was in pain was very short. My mother on the other hand was clear headed and lucid until about 5 days before she died 2 weeks shy of her 101st birthday.
    As far as suffering pain and losing your dignity, there are pain management doctors and hospice and palliative care that can handle most situations.
    We all hope we can go to sleep one night and pass before the morning. I would be happy just to pass. I'm ready to go, but I have responsibilities here that no one can easily take over for me so I hope that I will stay strong, reasonably healthy and of sound mind.
    BTW what was the subject? (Just kidding).
    Jack

    ReplyDelete
    Replies
    1. Jack,
      I'm ready to go too. I was worried about Bill, that he would have a financial problem if I passed before he did but since we got married, that concern has gone. No longer will he be left with a big tax bill should I die first. Other than Bill, I have no other responsibilities. I just have to update my Final Information booklet (where my accounts are located, account numbers and passwords) but other than that minor update, I'm ready. I used to worry that my photos and historical documents would be lost but I am no longer concerned about that. I've reached out to family members and they aren't interested. I will post as much as I can (information and photos) to my Ancestry.com account should some relative in the future be interested in my life but I doubt that will. I'll be dead and unaware of anything so it doesn't matter. I have comes to terms with that fact although I will admit it used to concern me that all would be lost when I died. I don't care now. All I care about now is my happiness and those who I care for and providing them happiness. After that, I've had my turn and it's been a good one. I'm satisfied.
      Ron

      Delete
  7. The best way to cope with the inevitable deterioration into dementia and age is to live the fullest life prior, so when it happens you feel no regrets.

    ReplyDelete
    Replies
    1. Dr. Spo,
      That's my plan, to live each day (and night) to the max. So far so good. If I go tomorrow, I have no regrets.
      Ron

      Delete