An Alzheimer's journey as told to me by a daughter caring for her Dad.
He follows me everywhere I go! I can't even go to the bathroom in peace. Dad stands outside the door asking repeatedly when I will be coming out. I think I am going to pull my hair out!
Don't get me wrong I love my Dad. He was always there for me. Growing up, he was my rock. I was lucky . My father was a patient man. He took time with me. I can remember learning to ride a bicycle. I was so scared to fall on the cement that I insisted on learning in the grass. Even though it is much harder to ride a bike in the grass he allowed me to try. Then he encouraged me to try the cement. Dad ran behind me holding on the whole way. He never left my side until I was fully ready to soar on my own.
Somethings Not Right
A few years ago my brother and I began to realize that something was off. Mom passed away about 5 years ago and we expected that dad would grieve for a while. But it was more than grieving.
Text From a Neighbor
When I got a text from a neighbor I knew it was time to get dad checked out. She had found him wandering around the neighborhood grocery store and said he just looked lost. She encouraged him to ride home with her and contacted me right away.
Against His Wishes We Took Dad for An Evaluation With a Neurologist
He wasn't happy. And he insisted there was nothing wrong. Dad told me he had just been tired that day and that is what caused him to be confused. I wanted to believe him. But there had been other signs. And deep down inside I knew it.
The Diagnosis Was Alzheimer's
In some ways it was a relief to know what was wrong so we could devise a plan to move forward. But I quickly discovered that each journey is uniquely different. My plan had to constantly keep changing. Though there will be similarities in behaviors and issues that each family will need to deal with, so many factors affect what will happen.
I Moved In With Dad
Since I was single and worked close to where Dad lived it made sense for me to move into his home. My brother and I figured Dad would be more comfortable in his own surroundings. In the beginning, we had a caregiver help a few hours each day and I was with dad at night and on the weekends.
As the disease progressed, however, I was needed more and more. I eventually quit my job to care for dad full time.
Dad Became My Shadow
He was by my side night and day looking for a reassurance that all was going to be okay. He followed me everywhere, repeatedly asking questions. And dad did not seem to understand my need for alone time. If I was out of sight even for a few minutes he would get agitated and anxious.
I caught myself becoming short tempered with Dad. And I felt guilty. The truth was caring for him was draining. Alzheimer's disease is not a job for one person. And there was no end in sight.
Looking back it was similar to when I was learning how to ride that bicycle. I made Dad promise not to let go, to keep me safe. Now Dad is asking for the same from me. Keep me safe, he tells me with his actions. Stay with me. I am frightened.
Shadowing and Alzheimer's
It's called shadowing. And it is very common in Alzheimer's I was told. Fear is the emotion that drives this behavior. For the caregiver it can often be overwhelming. I began to feel smothered.
This Too Shall Pass- But When?
I understand that this will not go on forever. But the fact is it could go on for years. Dad knew that as I gained confidence I would no longer need him to hold on to the bike. And he knew it would not take long. When you are taking care of someone with Alzheimer's Disease you have no idea how long this can go on.
An Alzheimer's patient can live for 10 or even 20 years after a diagnosis. I wanted to do everything I could to help dad. And I began to learn that this is not a job for one person. Oh my brother helped some. but most of the time he was just "too busy."
Placing Dad
I never dreamed I would place my father in a Memory Care facility. But doing that was the best decision I ever made. Not only was it good for me but I realized it was really good for him also. You see, I got to go back to being his daughter again, instead of his caretaker. I could visit him every day and we could laugh and talk. We could enjoy one another's company again.
I attended the parties they had and watched with delight as Dad smiled and had a good time. And he made friends with the other residents and the caregivers.
I No Longer Felt Smothered
My Dad had what he needed. A safe place where he was understood and cared for. Someone to cook and help him get dressed and get him involved in activities. He now had his daughter back.
With all of the chores lifted from my shoulders I could focus on just being a daughter. By having time to myself I was able to visit dad minus the stress and frustration I used to carry around with me. And you know what- I think Dad felt the difference too.
Pat Mack has been helping families make the right decisions to care for someone they love since 1997. Email Her Today for more information.
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