It’s been almost a year since my first post about Living With Alzheimer’s Disease. During this time, we, as a family, have been confronted with so many changes as my fathers disease has progressed. He stopped driving as he was aware that driving a car made him nervous and afraid. The simplest routes he often drove became hard for him as he often would become lost.
After my father gave up driving, the changes started to happen on a monthly basis, and sometimes a weekly basis. The behavioral changes were subtle at first, lapses in memory, brief periods of agitation and the like. But still, he was fairly coherent and able to hold simple conversation.
Around June of this year, the changes began to occur more frequently and were no longer so subtle. His thinking patterns became highly erratic, his communication skills deteriorated, and the bouts of agitation became more frequent. With the advent of Covid, Dad was no longer able to get in person visits with his doctor. Tele-health visits were initiated.
I should mention here that my father has other health issues he has been treated for for many years. Severe back pain from an injury sustained back in the early ’70’s, for which he has undergone 8 major surgeries and other forms of treatments for pain too many to list. Through this decades long ordeal, he has never been pain free. In addition to the back issues, he now has scoliosis which causes mobility problems. He can walk, though its painful, and he needs and uses a walker. Dad is also in stage four renal failure which adds to the other problems. And as if all of this isn’t enough, he’s also practically deaf.
So, where are we now? About a month ago, dad managed to get out of the house late one evening. Fortunately, a neighbor saw him and came to be with him as other neighbors gathered. One of the folks there, woke my mom, and she went out and coaxed him back into the house. The next day, we installed locks that need a key to unlock from the inside as well as outside thus ensuring that he could no longer venture out. He hasn’t tried to go out since that time thankfully.
A couple of days later, I came to my parents house to help out, and have been here since. I’ve taken over almost all of the daily chores, cooking, cleaning and such. My mother is grateful for the help and is able to relax a little. Between my sister and her husband, they live close by, and myself, we manage very well now.
Also this past month or so, dad was placed in hospice, and that has been a blessing. The team we have are wonderful, and the medical attention he needs is just a phone call away. The folks from hospice provide weekly nursing visits, a weekly social worker visit, CNA’s who come twice a week to see to his more personal needs, hygiene and the like. We also have access to home health care which allows us to go out for shopping or whatever we need while at the same time, providing a licensed care person to be in the home,
In my next article, I will be writing about behavioral patterns and some of the the issues we are faced with on a day to day, and sometimes hourly basis. There are a couple of reasons I feel compelled to write so openly. The first reason is to give an insight into what its like living with this dreaded disease from a care givers perspective. It’s a chance to express observations of behavioral patterns and some other changes that can occur as a result of the progression of this disease. And the second reason is to have a forum where I can share some of my feelings as we progress towards the inevitable end. I am not a doctor, nurse or therapist, just an ordinary guy reporting on what I see.
I welcome your thoughts and input. Please feel free to share your stories, and please feel free to share this article as you wish.