I don't think any words can even begin to explain the loss of your mom. People ask all the time... "How are you doing?" "How are you handling this?" "Are you ok?" - I don't know how to even properly answer that. I had even PRAYED for the day to come that she could find relief from Alzheimer's disease, but when the day actually arrives it is more painful and more sad than I can begin to even describe.
You see...my mom had Alzheimer's disease. But she is so much more than having a disease. My mom was one of the kindest and selfless human you will ever meet. She was always doing things for other people - volunteering for meals on wheels, playing piano for the church choir and nursing home church service every week, playing piano for church every Sunday, running errands for people, surprising people with flowers or baked goods. She would much rather it be about someone else versus being about her. Mom never missed a sports game, concert or other activity of mine or of her grandchildren.
When we first noticed changes it was in the little things. Repeating the same story in the same phone conversation and she would say "Or maybe I already told you that" - She would misplace things ... etc. My dad finally told us that he would find cash in the drawer because she forgot that she was already at the bank that day - Mom stopped calling me to chat on the phone - I'm assuming she probably thought she already did or was afraid she would repeat herself. I had lent her a book that I KNEW she would love, but she never read it because I'm sure she was having a hard time keeping track of the story.
We started our Alzheimer's journey by heading to the neurologist - There they did some simple neuro checks, memory assessments, lab draws and even a brain MRI. The doc had given her five random words...and mom couldn't remember them to repeat them. I knew we were in for a painful journey and it had only begun.
Her progression and decline was rapid. She had a REALLY short term memory - where she would repeat the same things three times in five minutes. It was worse when she realized what was happening to her. She would be inconsolable, crying - saying she was sorry - and sometimes even angry at herself. It progressed to her having a hard time finding her words, going to the grocery store multiple times in an afternoon (so I'm told) and she would become VERY anxious if my dad wasn't with her. She still had a way to show her love though...even when words became tough. She would smile - that was her safety. She would give you a kiss on the cheek, rub your back and play for a long time with your hair -
My dad was her lifeline. He helped her with her daily activities like showering and dressing - He learned how to do laundry, the dishes, cook the meals. As a farmer these are all the things that mom did, but at 70 years old he learned to do it all. They had their routine which involved going for drives to look at wild life, went to all of their grandchildren's events and went to have lunch up town with the meals on wheels crew.
I don't know how he kept it up for so long. He had a nurse come to the house during the week JUST for the afternoons so that he could take a "break" and go out and farm. If he didn't have help he would just bring mom with and she spent the afternoon waxing the truck or another task that involved keeping her hands busy. Putting things in order, folding towels, waxing the car, straightening up jumbled fabric squares - those are all things that made sense to mom still in the end.
I was so blessed that mom was able to come to my wedding. This past six months or so she was mostly in the wheelchair. She had a hip fracture the year before that and had ongoing chronic pain due to that hip that made mobility more and more challenging. Rehab exercises were not something she was able to comprehend and only caused her more pain. The last year of her life she wasn't able to talk and swallowing became difficult as well.
In November 2018 She moved into a wonderful memory care facility here in the area. My dad was still there every afternoon and spent that time with her even if it was sitting there with her he just wanted her to know she wasn't alone. Mom still enjoyed tactile things - she had numerous tactile toys, sequin pillows, playdough, stress balls and the like. She still loved music and I wouldn't be surprised if the Lorie Line CDs dad played for her on repeat are wore out.
This was Christmas Day...the day before she got really sick. On the 26th she became very ill and we all came to spend time with her as we knew her wishes were to just be kept comfortable. From that Wednesday until Saturday when she took her last breath...my dad never left her side. He cared for her at her bedside making sure she was comfortable in every way possible. Those last days were so hard to watch... and wait... We all knew that her best interest would be to go to Heaven - She had fought a hard battle - but I knew also that mom would do it her way.
She took her last breath on Saturday afternoon and although I still know the relief it had to have been for her, it doesn't mean that the pain that I have felt doesn't exist. My heart completely broke that day and I still miss her every minute. I'm so extremely happy for her - She gets to be in heaven with her Lord, playing on the grandest of pianos and gets to be HERSELF again. For that I am grateful.
Nothing can ever describe the emotions I've felt this past week. It's even more painful when you hear how much it has broken the hearts of others. To see my nieces and nephew cry. To constantly hear people say their heart is broken for me.
I'ts not about me. It's about the beautiful woman she was. She was so so loved. I pray that I can live in her grace, her patience and her love that she had for others. Alzheimer's did not define her - but it has to end. There needs to be more research and find a treatment and cure for the disease that robs so many families of their loved ones. If interested in donating in her honor - please email me.
Rest easy mom. I'm looking for signs from you as I know you are there.
Cookie and Treats Baker. R.N. Nutrition Nerd. Runner. <3 Coffee. Fitness. Foodie. In pursuit of finding my own kind of balance...
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