Why we Walk…. Day 2
Yesterday when I shared the post on social media, I included some statistics. I am sharing those at the bottom for those of you who do not use FB to access this blog.
You might remember I shared that my father was diagnoses with Alzheimers while my aunt had dementia. People have asked me what the difference was. I am not a scientist or a physician, I can share my personal observations from having dealt with them up close and personal for our time with them.
Both of them were forgetful. My aunt would cycle through the same conversation numerous times in the course of a visit. She forgot where she put things and hid her medicine in odd places and asked the same questions frequently.
But each time you told her, she would remember for a brief period of time. She knew that she knew what we were saying was true. She conversed with us and was present with us. Even though she forgot the whole thing in short order.
My father was different.
He would ask questions and as I answered, it was like looking into a vacant space. He would look at me, but not really seem to see me and he would shake his head and say a phrase I came to dread, “I can’t know what you are saying.”
On this point, we were in total agreement. I knew that for the next however long it took for him to grow anxious and start yelling, I would have to keep trying to repeat the information in a way that his brain could accept.
Changing the subject was out of the realm of acceptance. So I would slowly rephrase the answer to his question, trying to find some way to communicate the answer he was seeking until finally his patience wore out and he began becoming agitated, or my patience wore out and I knew my voice was becoming sharp.
Either of these meant it was time to go.
Sometimes I left with him in a docile condition, waving from the window and sometimes it was with a blast of his anger hurled against me. Either way, despite my warning to please not come to close to the door, he would set off the alarm and as I walked to my car, I could see the nursing staff gathering to talk him back into the building.
Another thing was his inability to operate things mechanically. He couldn’t button his buttons, needed help opening a bag of chips, and this man who had spent hours of his life pouring out music from a piano or organ bench, now was reduced to handing out the hymnals for the weekly chapel services.
The other thing that made them different was repetitive patterns of behavior. He would get fixated on some motion and then repeat it over and over. An example would be sitting in a waiting room with him. If a TV was on, he would turn his head upward toward it, look closely to see that it was indeed a television, settle back in his seat and then repeat the whole process over and over and over.
Another time as we waited for my mom to be examined, he got up from his chair, walked over to a thermostat on the wall, peered at it, walked back to his chair, sat down and this circled around until I thought I would lose my own mind.
Once we were able to get him placed in a facility, taking him out or changing his routine was not an option. Except for his dental appointments twice a year, I had to just continue to keep him on his routine. Outings with me or with the activities director usually resulted in a backlash of behavior and calls letting me know they had had to administer Ativan.
He told me once he remembered things in spots. We were sitting in the courtyard of his facility and he pointed out parts he remembered and parts he didn’t. I can’t imagine what it was like for him to wake up every day not knowing where he was and why he was separated from my mom and he had to believe whatever he was told.
When my mother passed in 2008, I went to the nursing home and told him. He cried so hard and kept shaking his head. His grief was raw. Eventually I had to leave him to go pick up one of the kids. He was so sad.
The next day I went to check on him and he asked where mom was.
I told him again, and he grieved as fresh as the day before.
As I left his room, bewildered and undone, the administrator of the nursing facility was waiting for me in the hall. She asked me if I was going to let him grieve over and over, or just come up with a new story.
So for the next two years, I just told him mom wasn’t able to come that day. Sometimes he was angry. Sometimes he was hurt. Sometimes he was worried about her.
He died on their anniversary.
I knew when they called me the day before December 22, 2010 to say he had taken a sudden decline that he was done waiting for her to come see him. He remembered so little in the years we had him here, but he remembered their anniversary every year.
He made it to celebrate that one with her.
I am thankful for the care he received that I was not qualified or able to provide, but many people can not afford or are unable to find good care for a loved one.
Children, spouses and friends of those who suffer from Alzheimers need our love and support and prayers.
Please consider joining our team to walk on October 8th, or donate to one of our team members. https://act.alz.org/site/TR/Walk2022/IL-Illinois?team_id=754140&pg=team&fr_id=15539
More than 6 million Americans are living with Alzheimers.
Alzheimers deaths are more than breast cancer and prostate cancer combined.
1 in 3 seniors suffer from Alzheimers and more than 11 million Americans provide unpaid care for people with Alzheimers or other forms of dementia.