Our Alzheimers Journey – Part Three
Months before I needed it, my friend convinced me to visit nursing homes. I thought it would be years before we were ready. I made a list of the things I wanted to ask and see at each place and she accompanied me on the first few visits and took notes for me. I visited thirteen facilities and narrowed it down to two. Alas, the one I picked had twenty people on the waiting list. At that point in the journey, I decided to wait and increase the hours of the in-home help.
As Steve’s condition declined, I set criteria for moving him to a residential care facility, because I knew I would never think the time was right if I did not have a guide. First, I decided that when the cost of hiring people to care for him was equal to or more than the cost of a memory care facility, it would be time. The second criterion was when my stress was so bad that none of the methods I use for stress reduction work. I defined stress as too high if I cried while helping Steve with something or I sat down and did nothing, slept, or rested for most of the day over several days, therefore failing to get even the most basic chores done. Finally, when we could not give him adequate care. In our case, changing his clothes and pull-ups as often as needed. In January of 2020 all of those milestones were achieved, so it was time for a change. Next came the adjustment and decision process.
Moving Steve to a residential care facility was very traumatic for me. Fortunately, my church has rituals for all major changes in life, including moving a loved one to a nursing home. The pandemic prevented an in-person service for completing this ritual, so I invited family and friends to a Zoom meeting moderated by our minister. They recalled things they remembered about Steve. Just knowing that this ritual was going to happen lifted my spirits and I was able to focus on the logistics of the transition.
While I was waiting, the pandemic hit and I didn’t want him in any facility due to the risk of infection. Later, as the pandemic progressed, one of the referral services informed me of an opening at a facility in a residential house serving 10-12 residents which had not had any incidence of COVID-19. It was an assisted living facility, but they were willing to take Steve. They couldn't allow visitors so I had to tour the facility virtually. The setting was like a home with kitchen and dining room as well as rooms that were not off a straight hallway such as in a larger facility. Residents saw and smelled food cooking. The resident to staff ratio was four to one. The price was less than the memory care facilities which I had visited. Although I couldn’t go inside, Steve could come out onto the patio which faced a yard full of trees, birds, and squirrels. I made the decision to move Steve and he was soon a resident.
When I went to visit him, we would sit on the porch, I would sing, and we would enjoy food or drink that I would bring. He did not say much and had to be helped to get out on the porch. Sometimes he did not want to come out to the porch to see me. I didn’t argue, but I did cry. He didn’t have control of many things, but I was determined he was going to have control of that decision, so I did not insist that the staff bring him outside.
Sometimes I would eat a meal with him. At first, he would feed himself, later I helped, then I fed him. One Sunday I put the food into his mouth and it did not go any further than his front teeth. A sinking feeling filled in my heart. In consultation with the staff, we decided he needed to go into hospice care. The next morning, prior to making that transition, Steve stopped breathing. We did not have a do not resuscitate order, so the staff and paramedics resuscitated him, inserted a breathing tube, and transported him to the emergency room. Exactly what I didn’t want.
As his health care power of attorney, I was able to direct the hospital physician to limit life support measures. Steve was moved into a hospice facility and lingered for several days. Three of his children that lived in-town as well as several grandkids and great grandkids came to see him. It was a blessing to know that if a do not resuscitate order were in place, they would not have had that opportunity. He struggled breathing for three days. I’m not sure Steve realized what was happening. Evidently, he did because at a nurse’s prompting, I told him he was dying. I told him I was going to be OK, that we would be with him until the end, and that he could go whenever he wanted. A few minutes later he died.
The official diagnosis was sepsis secondary to a urinary tract infection. We were fortunate that something took him before he went through the end stage of the disease. I had Steve cremated and although his children were initially not very comfortable with this decision, they were OK with it when I told them I was going to sprinkle the ashes in his favorite fishing spot.
As I look back on it, moving to a skilled nursing facility and leaving him at Charlie’s Place were the most traumatic events of our struggle. The journey was a long string of heartaches, each worse than the last. One of my favorite techniques for dealing with long term heartache and stress is doing something for someone else, especially if they aren’t expecting it, or better yet, they don’t know who did them a favor. For example, when I go through a drive-thru, I pay for my order and a portion of the order for the car behind me. Three people smile, the driver behind me, the cashier, and me. I benefited from the kindness of many others during my journey with Steve. As my journey without him continues, it will give me hope and joy to share random acts of kindness with others.
In case you missed Part One of Our Alzheimers Journey, please click here.
For Part Two of Our Alzheimers Journey, please click here.