Grown up Band-Aids

You know you’re in denial when your adult children have to set you straight.

“Grandma can’t take care of Grandpa anymore; the situation is out of control and it’s not going to get better.” They saw what my siblings and I didn’t want to admit. As we struggled with what to do next, Dad fell again. My mom called me as I was getting ready for work and said she couldn’t get him up by herself. I knew the time had come to move Dad into a nursing home. We all knew.

Later, I watched the EMT guys wheel Dad out of his front door for the last time. The realization that he was never coming back didn’t hit me until weeks later.

He spent another few days in the hospital and we went through the motions of “placing” him permanently in a local nursing home. The thing I remember most about this period was the surreal feeling it gave me. I had entered a new phase in my life; I was switching places with my parents. They had always been my caretakers and now they needed to be taken care of.

Knowing that something is the right thing to do doesn’t mean it’s easy.

I wanted my dad to have in-home care, even though he didn’t recognize it as home anymore. I wanted to have private duty nurses take care of him, but resources for that weren’t available. My mother had done her best and my siblings and I worked full-time. There were no other alternatives. Because of the cognitive impairment, Dad wouldn’t use a walker or ask for help, and fell every time he tried to walk. He was up multiple times during the night and tried to leave the house. It was obvious that he needed around-the-clock care.

The nursing home that we placed Dad in is just down the road from my apartment building. I drive by it on my short commute to work. In those first few months I cried every time I passed by. He had been a goer and a doer his entire life, which I believe is why he always wanted to get up from his wheelchair. He felt the need to go somewhere or do something, but couldn’t remember what. We watched his world shrink and, as it grew smaller, our hearts grew heavier. We visited 3 to 4 times a week and it was always difficult. Some visits were better than others, depending on Dad’s mood. We learned about “sun-down” syndrome and that he was more likely to be agitated in the early evenings. There were some pretty rough days where he demanded to leave and would swear and get mean. Then there were times when he was like his old self; rolling his eyes at the other residents and telling funny stories about them. During these fleeting moments I had my Dad back, and they remain in memory like momentary bursts of sunlight in those dark days.

He only lasted nine months. Despite being placed there for his own safety, he fell 66 documented times. Because the law won’t allow restraints of any type, my father didn’t stand a chance. There were only two staff in charge of 15 patients. He suffered more bruises, lacerations, contusions, etc. in those last months, than he had in his whole previous life. He made two trips to the hospital for x-rays. Amazingly, he never broke a bone. The guilt I felt for the pain that he suffered was unbearable. I didn’t realize how sick it was making me until he died.

I’ll always remember the last day I spent with him, five days before he passed. I took potato soup from my mom and a picture book I made for him. He ate the soup, with difficulty, but with appetite. It was his last meal. The strange thing about that day was he never spoke. We looked at the pictures together and I prompted him with questions, but got no verbal responses. They put Dad to bed that night and by morning he had become unresponsive. The staff advised us that this was most likely his final decline. I had so many mixed emotions, but prayed that he wouldn’t suffer or linger too long. I didn’t want him to go, but considering how the disease had changed his life, I didn’t want him to stay.

I was incredibly thankful to be with him when he died. I hugged and kissed him and stroked his head, just like I always did. He was an affectionate man and passed that on to me. He had lost so much in the way of memory and cognition that I felt touch was the last means of communication we had. I hoped that on some level he sensed I was there and that he wasn’t afraid. As his breathing slowed, I put my face next to his and whispered that I loved him and thanked him for being a wonderful dad. I told him his brother and parents were waiting and to look for them. I told him I’d see him later. Lastly, I assured him that he would never fall again; that freedom was only moments away. We wouldn’t need the grown up Band-Aids anymore, because the true healing was about to begin.

Band-aids

Band-aids.That’s what I’ll remember from the last two years of my Dad’s life.

The funny thing is, you normally associate them with children. I sported my share as a kid and applied many as a parent. But you don’t think of them as a geriatric mainstay, unless you’re dealing with the frequent falls that result from Alzheimer’s/dementia.

I’d heard the expression that we “come full circle” in our lifespans, and now understand how true that is. I didn’t have the up close experience of the aging process with my grandparents. But I have with my own parents, and particularly with my Dad over these past several years.

It began as a simple fall in the yard, on the grass, no harm done. Some time went by and then another fall. We thought it was the athletic flip-flops that he wore, so we threw them away when he wasn’t looking. Then another fall and we noticed that he was shuffling his feet when he walked. I thought it might be Parkinson’s, so I took him to his doctor. That visit began a three-year journey that only recently ended. His PCP did a variety of tests and sent him out to specialists, determined to figure out what was going on. By the time we got the diagnosis, more symptoms had appeared.

My Dad, always an outgoing people-person, had suddenly become quiet and introverted. When we gathered for holidays he stayed in the TV room, rather than joining us to socialize. He was growing increasingly forgetful, seemed depressed, and continued to have balance issues. The falls kept coming. Eventually, he lost his driver’s license after a hit and run fender bender in the neighborhood. It wasn’t the accident that surprised me most, but the fact that he drove away without telling anyone. We wouldn’t have known if the police officer hadn’t shown up at the door.

Once we knew about the dementia we began to understand what was actually happening inside my father’s brain.

But I’ll never forget the day that I really understood the magnitude of the situation, and of what was coming. My Dad looked at me with somewhat pleading eyes and said, “I asked your mother when we were going home and she said that we are home.” At that moment we were standing in the living room of his house.

Talk about the monster under the bed. Here was the man who could scare off the bad guys and perform amazing feats in a single bound, looking frail and unsteady. My inner child was shaking and I knew it would only get worse.

In February 2014 my Dad suffered a fall that put him in the hospital for ten days. His cognition had gotten so bad that he no longer threw his arms out, a normally involuntary response, and face planted on the hardwood floor. He suffered another fall in the hospital that resulted in additional days to his stay. After being discharged he went to a nursing home for follow-up care. He was placed in the Alzheimer’s/Dementia unit and I hated the fact that he was there. He wasn’t like those other people. Yet.

We hurried to make the house safer and tried to figure out how to keep him from falling again. I remember my brother and I going to pick him up at the end of his convalescent stay, and how happy I felt to be bringing him home. But it was short-lived. Despite home health care and efforts to teach him to use a walker, we just couldn’t keep him off the floor. My mother tried to keep an eye on him at all times, but it was impossible and he wouldn’t use the walker. He also began to have “sun down” syndrome, a period of agitation that generally occurs in the early evening. He would become angry and combative, using expletives that he had never used in front of us before. Another problem was that he no longer slept through the night. He was up and down, taking my mother with him.

I got so used to seeing him cut and bandaged, his bumps and bruises a variety of colors depending on where they were in the healing process. It amazed me that he hadn’t broken any bones yet.

We lived in constant fear of the next bad fall. It wasn’t a matter of if, but when. That “when” came less than three months later and the band aids kept getting bigger.