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Parents' Blog

Double The Trouble: An Alzheimer’s Experience

June 25, 2016 / by Tracey Ray

Tracey Ray

Both of my parent have Alzheimer’s . . . that is correct, BOTH.  I often have to make that distinction twice when announcing this during a conversation.  Yep, it is a huge bummer.  And a journey I have never wanted to take nor do I want anyone else to have to experience.  Where do I begin.  First, they both present their symptoms in very different ways. 

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I will start with my mom.  My mom was sweet, kind, loving, selfless, non-complaining, and she was my dear friend.  The woman I call my mom today might be described with the exact opposite adjectives.  She is so sick, so unhappy, and really quite miserable, and occasionally unkind.  I knew she was sick when I got pregnant at 40 mind you (6 years ago).  She would tell me over, and over, and yes over again how much weight I was gaining.  “Has your doctor seen you lately?” she would ask.  “Does he know how much weight you are gaining?”  “My doctor would have never let me gain that much weight when I was pregnant with you and your sister!”  “What are you eating?”  “He needs to put you on a diet . . . you need to go on a diet!”.  Hurtful words to be sure although now that I have in fact lost all of the weight, much less hurtful.  Yet it still highlighted a change in both personality and memory that were concerning.  I would ask her not to say such hurtful things and she would promise not to; until our next conversation a month or so later when she had forgotten both the words she spoke and the promise she made. 

After I had the child, we went to the neurologist who delivered, in a less than compassionate way, the news that my mom did in fact have Alzheimer’s.  We got a second opinion and received, not surprisingly in the same manner, the same diagnosis.  After the second diagnosis, my mom and I went to lunch where she cried and cried.  She cried tears of such sadness both for herself and for what she knew she would one day put me through. 

We are at that very sad and dreaded day.  Today, my mom is the far sicker of my parents.  She lives in the day to day; she mostly knows me, my husband, myomc son, sometimes my sister and her husband, rarely my sister’s kids, and rarely my older children.  This journey is a slow and emotionally draining mourning of what once was a beautiful mother, daughter, wife and friend.  She has all but forgotten her friends.  She forgets their names, their faces, and she forgets to call them.  She is no longer able to use a computer, that technology was always a bit out of reach for her but now turning it on is not a function her brain can accomplish.  She can’t remember the names of the people they dine with in the senior living center either, despite the fact that they dine at the same table every day.  She can’t remember how to play Mexican Train and thus can no longer socialize with the women she desires to know.  She can’t remember the times that her bible study meets and thus often misses bible study.  This means she is isolated.  She is lonely.  And I cannot do anything to change this for her.

The disease has taken her in another way; one much less common or at least less talked about.  She has lost her ability to walk, run, stand upright, and move.  Now she does still walk; or rather she shuffles in a hunched and cautious walk.  Her feet hurt, she has hammer toes and bunion that hurt her.  She asks me to make her a doctor’s appointment to get her feet fixed.  I make the appointment and called her to give her the date and time to which she replied “why are you meddling in my life; if I want you to make me an appointment I will ask you to.”  A year and a half ago she and I journeyed to Las Vegas, Nevada where she was going to meet up with life-long friends for a long weekend.  She was no longer capable of traveling alone so I went with her.  On our way, she fell and she fell hard.  We were at the Denver Airport and she was transported by ambulance to a nearby hospital where she was treated and released with eight stiches to the head.  We eventually made it to Las Vegas where her friends who she was meeting proceeded to take their planned journey to the Grand Canyon for the day, leaving my mother behind with me. 

This leads to the description of people in my mother’s world; it has incredibly shrunk to a ten-mile circle; friends for 30+ years names are forgotten, the ability to conduct a conversation – gone.  Time together?  Nada.  Now I can’t exactly tell you what is happening here. Is looking at my mom’s condition a reflection of what could be for them and thus they turn away? I know daily, weekly that it is one of the toughest things I have done - to still be around and with her.  It’s hard. Choices people make that are about their agenda and not meeting illness where it needs to be met, well it has sent me into a spiral of anger and frustration.  I will not assume to understand friends’ departure from her life but now, today, it is simply irrelevant.  For should they chose to visit her or call her, there will be no recognition of the faces and even less memory of the visit when they leave.  For this I am both grateful and heartbroken for my Mom. 

 

My Dad

My Dad, too, is simply a diametrically different person today than he was my entire life growing up!  My Dad was not kind to me as a teenager - Crisco was my Dad’s nickname for me, “fat in the can”.  We went through very difficult and mixed periods in our relationship.  He was a coach in sports and never missed a game for my sister and I, but at dinner, he would disappear with food, a six pack and be gone the rest of the night, every night.  He drank way too much and was very quick to anger and meanness.  With earlier stages of Alzheimer’s setting in, he has gotten much more kind to me. He says “thank you” and that he loves me. These things did not happen when I was 25. Strange; my Mom getting meaner and my Dad getting nicer. Complete reversals of our early years together.

While my Dad has always been a loner, and content to tinker in his garage and clean his car for two hours at a time, he is now singularly focused on caring for my Mom…at the risk of his small amount of happiness. He does not like the retirement home, as his cars are parked under a cover. When it snows, his day’s agenda is wiping the snow off his cars three or four times a day.  He hates where he is, and while he can’t stand it, he also realized he can’t live on his own. His comfort zone has shrunk significantly. If it is not a familiar place (Village Inn for breakfast on Wednesday’s or the Walmart for shopping after), he is totally lost and not confident in his former strength in map reading. 

Watching my Dad makes me very sad.  He is incredibly devoted to the love of his life, but terribly miserable with their current existence and domicile.…and I know someone further down this journey is saying “sister, you ain’t seen nothing yet” …lovin’ ‘em through it!

 

So, we are thinking about moving them in to our basement...

Tags: Family, parenting, Alzheimer's, Sacrifices

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