The Journey Into Dying
When does death begin? I don’t know that there is a definitive answer that I would agree with, especially with a disease like Alzheimer’s. In my opinion, Alzheimer’s is a slow death. There are even stages for it. For those of us who love the person, our perspective is awful for a period of time. Alzheimer’s takes your loved one apart in pieces. Mind, then body. It feels like they are gone before they really are.
My dad's decline as the disease progressed
With my dad, I saw him really start to decline about 10 months before he passed. I saw the changes, the way some of his body would stop working, on top of his mind that was in severe decline. He lost the ability to walk. He went from walking, to shuffling, to a wheelchair full time, not all in 10 months but the change was dramatic nonetheless.
My dad lost the ability to eat. We had decisions to make that we didn’t even realize we would have to help make. Our worry was that, if Dad couldn’t eat, did that mean he would starve to death? No it didn’t. There were options for him. Some were helpful. Some were worth trying even if they failed. Others were really not an option because, well, it would have been cruel to do it to him. I’m referring to a gastric tube. For many this is an option. For Dad it was not. Not only is a G-tube very painful to insert and live with, there is the real danger that Dad would pull it out. Imagine the risk involved in that. We would be creating harm, instead of helping when it was apparent Dad was moving through the stages of dying. It was heartbreaking to watch. All of this, for me, defined that Dad was dying.
But there was also beauty
But. There was so much beauty as well in something we had no control over, Dad dying.
Dad was changing quickly once he was in his memory care home, but it wasn't because he went there to live. It was because he was dying. Mom could not care for him anymore at home. There was so much love in the staff, the genuine love they had for Dad while they cared for him. They never got angry or annoyed. They spoke to Dad with respect. They spoke to him like you would any man his age even though we were sure he couldn’t understand. Some would say, it was their job. Yes it was, but they did that job with true love for the people they cared for. It felt like they were family as they cared for all of us too. They helped me so much through the dying process, the process of losing Dad. It didn't matter how many questions I had, how many times I had to ask the same question or how many times I called, they showed nothing but love and patience.
Support from others was a huge help
Then there were the wives of the other residents who would come over and say “Hi Andy. How are you today?” even though he couldn’t respond. It was the touch of their hand to his that left me speechless. It was the care these women took of Mom who was so vulnerable and heartbroken. The reassurance they gave to Mom that she was not alone. The hugs they gave Mom. The hugs they gave me. Some even found the time to come to the visitation after Dad passed.
The most profound beauty though came from a gentleman named Earl. Earl lived in the room next to Dad. He would come over to say hi when we were with Dad. I’m not sure why Earl was living in memory care. His memory was better than mine. I suspect he had Parkinson’s or some similar disease. Earl loved Dad.
When Dad was moving into the final stage of dying, Mom and I were there most of the time. We decided to leave for a short period since Dad was stable for the moment so we could get something to eat. When we returned, we found Earl sitting at the bedside close to Dad, his walker beside him, soft music playing. He got up when we came in, and softly crying for Dad, he gave us both a hug. We asked him to stay but he got his walker and returned to his room. Mom and I cried together. It was such a beautiful moment that just went beyond words. Earl didn't want Dad to be alone. That picture will be in my heart forever.
Losing a loved one is never easy
When the final days were apparent, Mom was lost. Earlier in the year, my daughter lost one of her closest friends to cancer. Twenty-six-year-olds are not supposed to die. Her mother told me quietly when her daughter was in hospice that she gave her permission to go, to die; that she had fought hard enough and it was time for her to rest. I wasn't sure whether or not to share that with mom. When I did, Mom seemed relieved. She whispered in Dad’s ear that he had worked hard enough, that she would be ok and that he could let go now and rest. I did the same. We needed Dad to know it was ok to go and that we’d be ok.
A day or so later, the nursing home staff told us that Dad would likely not make it through the night. They gave Mom and I the option to stay with him but felt the end may not be easy for her watch and may not be a memory she would want as her last memory of Dad. Mom and I talked, she decided it was best for us to go home. Dad passed at 3am.
For everything that is sad and heartbreaking about death, I have learned there is beauty as well. There are memories I will cherish forever even though I miss him dearly.
Do you have in-home professional care?