Our Family's Fight With Alzheimer's
Our "What our family means to you" Family Photo
Our family's fight with alzheimer's started way before a diagnosis was given...
like many of these stories begin, things were so subtle we didn't even see it at first. Once we started to see things it would be a few years before we would receive an actual diagnosis.
My grandmother was known as a storyteller. together her and my grandfather had lived such a great life that they had many amazing and entertaining stories to tell. so, because of this we never really noticed the season of telling stories over and over again because we loved hearing these beloved family stories. Minor forgetfulness was laughed off as something that just happened. Just like most families we didn't see anything out of the normal.
in hindsight I now realize that my grandmother was the first one to notice something was off... whether at this stage she told my grandfather or not I don't know, she didn't really outright say anything but her actions, i know now, were starting to show she was concerned. she started focusing her time on word puzzles, sudoku, and brain puzzles. To us she acted as if it was just something she enjoyed to do in her spare time. these minor memory concerns were out shadowed by other more major medical issues at the time; hip replacements, knee replacements, pain management surgeries just to name a few.
After a very serious back surgery, in which Grams has to wear a "turtle shell" back brace for over 10 months, we started to notice things like concerns with a daily/ nightly routine that if broken would put grams in a "off" mood and visibly upset. she became more vocal about wanting to improve her memory, to the point of finding and ordering a "Green Tea Elixer" in a magazine that insured it would improve memory. Grams was convinced this elixir (which ended up just being concentrated green tea that she would drop into water) was improving her memory.
One summer day Grama had gone out for a drive and came home with dents and scratches all over the car. she had driven and "blacked out" and didnt remember what had happened or how she got home. this is where we all became very concerned. my mother and her siblings decided it was time to take away grama's license. from this point on there were many episodes of this type of "black out". sometimes the blackouts were so intense that she would go into this type of deep sleep where she wouldn't be woken up easily. this let to many ER visits and being sent home with nothing but: "we don't know what happened but she's awake again, here go see a specialist".
Because Grams had so many other medical issues it wasn't at all obvious that this was a neural issue, infact doctors first diagnosed her with Parkinson's, and thats how they approached it... yet the blackouts continued. on top of this she was now forgetting short term details such as whether she had eaten (which affected her blood sugars as a diabetic), forgetting if she had taken pills, which led to double dosing on some pills. more and more we realized that she needed more help with day to day tasks..
Time for Pie
spending the afternoon with my grandmother during the time she had to wear her "turtleshell" making her famous raspberry rhubarb pie and trying to recall the stories she once told with such ease.
maybe a year before a proper diagnosis, grams started to become suspicious and paranoid... she would become worried that people were watching her, going to break into the house, and they were after her money. she would hide valuables in the oddest of places and forget that she had hid them there. she would be a lot more easily agitated, and even suspicious of her faithful husband. this would grow into the point where my grandfather could not leave the house for long periods of time because she would forget where he said he was going or if he was even going to return. at this point it was obvious to us the depth of the memory concerns. she at times would zone out folding and unfolding-folding and unfolding a towel or blanket.
one of the hardest parts was when we realized she had been preyed upon and god deep into sweepstakes scams. her decision making ability was fogged so to her it was a job as if she was racing money to help her grandkids buy a car or go to college. she would be very secretive about the hundreds of sweepstakes letter that would arrive throughout the month. once we realized what was happening we had to have the mail sorted before she was able to see it. (i will talk more about the sweepstakes in an upcoming blog post)
FINALLY in the summer of 2013 we received a finite diagnosis: Alzheimer's and Lewy body dementia...
The next 4 years would now progress at a rapid rate... with each passing Christmas we would see our beloved matriarch dissolve deeper and deeper into this horrible disease. Sundowners would progress to where it was frustrating to keep grams at home. when one night we got a call saying grandpa had found grama in her nightgown with the garage door open in the middle of winter about to drive the car... it was decided it was best for grams and her safety to go to a secure care facility.
though grams could see her "house" from the window of her room, this too caused grams to press faster into the decline of later stage alzheimer's. She now had difficulty remembering names especially when it came to family members that she didn't get to see as often.
as days went by grams rapidly lost the ability to communicate effectively and as family we would rejoice in the days where she would find clarity and return to us, even if it was nothing but a fleeting moment to say, "These are my boys, they are giggly today". just as quickly as that special moment came it would leave and she would be lost in her mind. As she would loose her communication she would start this sing-songy chanting/moaning that may go on for hours.
from the day we got the diagnosis i got my hands on as much research as i could find... i knew the lingo and had prepared myself for what i thought was every situation. at some point i stopped even asking Grams if she knew me or if she remembered my name, because i didn't want to put her in that frustrating situation i just wanted to BE WITH my grandmother wherever her mind was that day. with that i would be blessed with every time she would come back and mention me by name or tell me she was so excited for me and my fiancé. Even three days before she left us she came back for just a short enough time to tell me she loved me and that i still had a beautiful smile. there were few good days like this and many many bad days where my grandmother was nothing but a shell of the woman i knew... yet my grandfather was there with her EVERY. SINGLE. DAY.
like i said i thought i had prepared myself for every situation....
what i did not prepare myself for was for her body to in her last weeks forget how to eat, to forget how to swallow food. we knew time was limited and that we should spend as much time with her as possible....
a week before she left us she had a great day, an entire evening where she recognized everyone and she told all of us she loved us, she even visited with an old friend and they laughed at some great times they had, she even told her friend that she missed her and the fun they had together.
on December 7th we celebrated her 86th birthday with her though she was in and out she had a split moment where she recognized me and said, "my Tony, I sure Love you". these are the last real words my grandmother said to me. tears still fall as i write this. Three days later a few hours after leaving her side for the night we got a call that we needed to call in the family her breathing was becoming quite labored. our family gathered around her and prayed and told her we loved her.
I sat at her bedside holding her left hand, as my grandfather was holding her right hand. as the room was quiet I softly sang my beloved grams her favorite hymns. As I Sang "On Eagles Wings", one of her absolute favorites, I got to the lyrics at the end of the song:
For to His angels He's given a command
To guard you in all of your ways
Upon their hands they will bear you up...
At that exact moment I felt the hand of an angel grab my hand, and with that I knew I had sung my grandmother to sleep...Heavenly sleep.
Though my grandmother may have completed her fight with alzheimer's my family has not. This is why we have created this website.; to share our story, and to help those that are still fighting "the Long Goodbye". it is our mission and pleasure to help those amidst this battle by doing what we can to improve their quality of life, and to spread the spirit of Joy and peace, that can be found if you life live under the banner of:
"KEEP A SMILE ON YOUR FACE AND A SONG IN YOUR HEART"
