Haunted by the Disease

Three nights ago, I was at my neighborhood swimming pool all by myself.  It is a lovely saltwater pool that I often find maintained but rarely used. I often enjoy my exercise by myself.  That night from the pool, I noticed some trash strewn next to the pool.  Doritos bag and coke bottles.  I thought to myself that when I finished swimming I would toss them in the trash.  Careless teenagers? I thought that  even in Anaheim Hills people don't think of others. 

That evening an event occurred that has almost haunted me since....I've thought about it many times and wish I could go back and respond differently.  

I think this story is about a person with early dementia but I'm not sure.  Unless I go back to the pool and by chance encounter the old couple, I will never know.

I was in the deep end of the pool and watched an elderly couple (late 80s or early 90s) enter the pool area.  Their gaits were slow and methodical, like they fear every step will end in a fall.  They stabilized each other.  The woman walked with the assistance of a walker and the old man helped her gently into the pool.  I told them the water was very warm and enjoyable.  She told the man, "Look, there are pine needles in the water.  Perhaps you can take them all out while I swim like you did the other day."  I thought nothing of it at the time. 

Myself and the woman were busy moving through the water.  The old man was in the shallow end splashing at the water and then he stopped and walked to the edge of the pool and started taking pine needles out of the water, one at a time, and putting them on the cement next to the pool.  Again, I thought nothing of it.  I heard him and his wife carrying on small talk and since it was not my business, I did not really listen.  In fact, if I had to recant their conversation, I could not.

As I closed the exercise rings on my Apple Watch, I decided to not exceed my goals but rather be content in the fact that I reached the goal.  I was hungry and wanted dinner.

I got into the hot tub to warm up.  As I dried off to leave, I glanced at the pool.  The woman was safely floating on her back and oblivious to anything else.  I looked at the man and he had moved to the other side of the pool and was reaching for the Doritos bag.  He reached slowly into the bag and began to feast on the Nacho Cheese flavored delicacy.  I thought, maybe the couple had been here earlier and left those and that the Doritos were theirs.  I walked away but turned around and looked again at the scene.  Something was not right.  His hollow eyes looked at me and I was embarrassed that he saw me watching him.  I went home.

I have re-thought this scenario many times.  I honestly think the man has a form of dementia.  The looks, the behavior and the strange non-filtered actions were too close to behaviors exhibited by my former husband.  Why else would he have been so meticulous about the pine needles but eat Doritos from a bag left behind by others?  I had to think, does the wife know?  

How silly of me, of course she knows if she lives with him everyday.  Then again, when a wife or spouse is in the day to day hell of the early disease, the behavior goes ignored because it is odd and we relate it to aging.  The stress could be overwhelming for her and that few minutes of floating where she was not watching him is the only peace she gets.

Then, the guilt set in on my emotions.  What if the old man got sick from eating the Doritos and because I didn't say anything, she doesn't know why.  Why didn't I point out this situation to her?  Afraid to interfere? I have imagined having a conversation with her......how would I have asked her if she is okay.  Does she have a support system?  Has he been diagnosed?  Maybe he doesn't have Dementia at all and he was just from an era where if you are hungry and you see food wasted, it must be eaten?  Ada, don't be silly.

Anyway, I have thought many times over the last few days that I am forever changed by the fact that I lived through many years of FTD hell, as a wife and caregiver.  I think differently and feel the responsibility still to help others if I can.  In this case, I failed.  I walked away.  I won't do that again.

Last Sunday, our Pastor talked about believers needing to walk toward others in discomfort or needing help. Perhaps I heard the message but was not listening.

I have rationalized since that I am sure the old couple is just fine. I am hoping that I will see them again and be able to further interact with them to get the whole story.  I hope I was wrong about it all but my guts tell me otherwise.....it was Dementia.  In some small way, the hell of that horrible disease forever haunts me.  I wish it on no one.

There is hope after the "stare".

Sunday is Father's Day.  I was reading this blog from years past around this time of year and contemplating how things have changed over the years.  This time last year, Gary was still alive and for the most part, showed no emotion....just had that blank Dementia stare. 

For those who don't know, Gary died in January this year, 2018.  He fought a long hard battle with F.T.D.  Sadly, it was a battle that is never won by the person who has it nor by the family and caregivers supporting them.  It is deadly and for now, has no cure.

This week I was talking with some co-workers who were inquiring "How are you?"  It is so interesting when people ask the question because they are not sure of the response but I know they are genuinely concerned about my well-being.  Sitting at the table was a new employee whom I had just met and she knew nothing about me.  I did not take this into consideration before I answered because I knew the one asking the question knew my story.  So I answered that I am doing very well and happy.  

We chatted for a while about how things have changed and I referenced a time when Gary just had "the Dementia stare".  The new employee, a compassionate nurse, giggled.  Not knowing the situation, she assumed that my husband was "Normal" and found my reference to him staring as funny.  I thought nothing of it and told her that he had died in January of Dementia and that the time I was referencing was a time when he really did stare.  I am not sure, but I think she was partially mortified and partially thankful that I seemed to have accepted my fate and am moving through life.  She apologized and I explained that it was okay and I apologized to her for being so casual and flippant.  (Defense mechanism that I have mastered.) We all had a good laugh and moved on with the update.

Later in the day, I encountered another employee who is the primary caregiver for a husband-still-at-home-with-Dementia.  Few people know of her plight as she is very private.  We chatted about his regression and that fact that he is at the shuffling, unstable, stumbling stage of walking.  I remember that stage well.  Everyone around the patient then is scared of a fall.  She and I chatted about possibilities.

I asked her if her husband still knows who she and her children are to him.  She said a quiet "yes" but looked at me with a realization that the day is coming when he won't.  I hugged her and told her I would be there for her when that happens.  We parted after a sincere hug.

The disease is so horrible.  It is obviously difficult for the patient but is equally difficult for the caregiver.  What I do know is that six months later, after the passage to peace, life is good again.  There is hope that any caregiver can heal and be happy. I want to thank the support team that helped me for so many years....they are too countless to name.  Some were instrumental in my ability to cope and recover.  You all know who you are.  Thank you.