Daily Archives: April 17, 2009

Long Goodbyes- Letting go when a parent has Alzheimer’s disease

jeff-dad-and-me-at-ca-capitol1Better Times: Jeff, Dad and Me in front of California State Capitol around 1972-1973

We all hit times of transition in our lives.  Sometimes these involves moves, job changes and relationship changes.  However the hardest seem to be the passage of generations, especially when we see our parents passing away or in their final months. Alzheimer’s disease makes that process different, it’s not like a heart attack or stroke although strokes can have a similar effect, cancer or renal failure.  Alzheimer’s takes the person that you knew away long before they die.  It is the longest of goodbyes.

My dad has been diagnosed with Alzheimer’s for some time now.  He has been going down bit by bit for the past several years.  It started slow, in fact we didn’t initially notice it.  He started not remembering things and having minor fender bender accidents which we found out about later.  As he continued to go down his mental status, nervous behavior and lack of awareness increased.  As this happened my mother tried to take care of him herself, she tried hard, but was unable to cope with him.  Eventually she began to wear down.  When he fell down and broke his arm in several places last year it was the beginning of the end for him, an end that is likely fast approaching. Since he broke his arm his mental status and physical condition have deteriorated significantly.  Additionally his disease process has affected my mom, who has not taken care of herself the way that she should.

I saw him in the spring of 2007 just before I went to Iraq, and last year after my return from Iraq I made three visits to the California from my home in Virginia.  I anticipate a trip out in the relatively near future.  Neither my dad or my mom are the parents now that I grew up with, the disease has taken a toll on both of them. Of course we all think about the patient, but the closest caregiver is often worn down to nothing by the process.  This has been a process of a long goodbye for all of us.

Diseases such as Alzheimer’s are hard to deal with.  They are slow moving and because they are rob the person of who they are, difficult to watch.  Those closest to them seldom realize what is happening until things start really getting weird.  Such was the case with my mom.  my dad was having auto accidents and other problems before his diagnosis. Before this dad was active, involved with community groups and an avid golfer.  He loved all kinds of sports and to travel.

His deterioration has been most remarkable to me.  This is perhaps due to my distance away from where my folks live.  I don’t see him everyday.  Thus when I go back my benchmark for how I see him is different than that of my mom and brother.  I can see the major changes in every visit because of the distance.  Likewise I can see the deterioration in my mother’s condition with each visit.  I can see the toll that my dad’s disease has taken on her. She is not the same as she was even a few years ago.

Even though I am not in the same town, I am reminded of my parents on an almost daily basis.  In my work in the ICU of a major Naval Medical center I get to spend time with a lot of people who are a lot like my folks.  My parents are retired Navy, my dad retired as a Chief Petty Officer back in 1974.  I am a quintessential “Navy Brat.”  I grew up in it, I lived and guess that I still live for the adventure of military life.  I find that there are a couple of major sub-groups of military brats.  Those who loved it and somehow continue that type of lifestyle, and those who don’t and as soon as dad retires never look back.  They never move again if they can help it.  My brother is like that, he has remained and been very successful as a teacher, and now school principal in the town that we retired in.  He has a wonderful family and it turns out that we are a lot more alike than we are different.  I see a lot of this where I work.  It seems that a good number of the patients and families that I get to know in our ICU are my parents generation.  Their kids are often “Navy Brats” like me. We have a shared experience of life that you do not find in many other places.  It is like we are family.

While I spend time with these folks, many going through end of life situations, I often see my parents.  Every old retired Chief, or retired Chief’s wife reminds me of my folks.  They remind me of the good times and the bad.  They remind me that I am awaiting my time to be be at my parents bedsides, not as the Priest, but as the son. With every one of these visits  I am back home.  During clinical pastoral education training you are taught to recognize what is your stuff and what belongs to the patient and the family.  I’m pretty good at doing this, but even recognizing this fact, the feelings can run pretty strong.  Like the Romulan that I am I am not a big fan of emotion.

This is a long goodbye.  Alzheimer’s ensures that you do not wake up and find that your parents died suddenly and unexpectedly.  They die a little more every day. With each visit I have returned to my home and duty station wondering when I will hear that either mom or dad has passed away.

This week was hard.  I got a call from the nursing supervisor of the place where my dad is being cared for.  His condition has gotten worse, his weight is dropping rapidly, 10 pounds in the past month despite increases in diet and nutrition.  The call came at a unusual time, when I saw the number I thought that it was the call that said he had passed away.  The lady who called is an old high school classmate who not only is concerned about my dad but also my mom and she let me know that dad has lost 4 pounds in the last week. His doctor is surprised that he is still alive.  He is down to 116 pounds, and even when I saw him at 130 last year he looked really bad.

We made the  decision yesterday to make my dad a hospice patient.  He will remain where he is, but will now will receive hospice care.  The decision was another watershed.  My brother and I both have known and made our peace with the fact that my dad is in his final months or maybe even days.  The end is coming, and is sooner than it once was. It has been harder for my mom, I don’t know if she will recover, she had somehow hoped beyond hope that he would somehow regain himself.

The goodbyes to my dad have been said, but they are not finished.  When that will be is still uncertain.  Until that day things will remain in this no-man’s land between life and death.  I know that there are millions of others going through similar situations and to them I say “you are not alone.”

Peace, Steve+

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Filed under alzheimer's disease, Loose thoughts and musings, Military