Losing It

I wrote this in November 2021. Some things have changed. Some things have just gotten more. Regardless, here it is.

Back when my grandfather was “losing it”, there were no memory care facilities, at least not in our small, rural town. There were nursing homes and boy, were they sad places. I think there was just one at the time besides the “county home” where I guess you went if you didn’t have any money or people to look out for you. I never stepped foot inside the county home but my imagination conjured up a dark, scary place with incoherent people sitting wherever they had been left and thick air that smelled of feces and lunch. My 5 year old mind took what it had experienced from nursing homes and cranked it to 11. My grandpa had been in a nursing home in the late 70s and my brother had been in and out of one for a few years before he died in 2018. I’m not sure they’ve changed much. Well, except for the cost.

My grandfather had early onset dementia, probably Alzheimer’s. His co-workers noticed at first since he was a Building and Bridge Foreman for the railroad and that was a dangerous combination. I think he was fired or at least threatened of it because I know he kept his pension. I only remember bits and pieces since I was such a little tyke at the time. My earliest memory was of him looking me in the eyes and telling me “don’t do that”. Fear permeated and froze me where I stood. The fact that I was probably only three years old did not lessen my feeling that something was very wrong and actually may have been more in tune to it. He became uncontrollable and he needed to be controlled. He would get in the car and drive and not know where he was going. He eventually got kinda mean, kinda pushy with grandma. I think there were some court proceedings. Then he was in a nursing home.

He looked like a commanding, put-together, picture of health. He was trim and well-dressed. His full head of black hair was always in place. You never would’ve guessed he was “losing it”. He smoked but eventually forgot that he did although he still liked to have a pack in his shirt pocket. He walked out of the nursing home a few times and no one questioned him. We would get a call that he was missing and we would jump in the car, frantically driving the neighborhoods. Sometimes we found him and sometimes he caught a ride and the person would figure out something wasn’t right and he would be led back to us. Sometimes we wouldn’t know until he was back.

Grandma would visit dutifully. My mom and I would, as well, although less than grandma. He eventually passed through the physical and mean stage. I remember my mom being relieved when he now got a big smile on his face when we walked in even though he couldn’t identify who we were. He was still happy to see us. His hair was starting to grey. He no longer wandered away. We took him for rides in the car on Sunday afternoon that he seemed to enjoy; he and grandma in the backseat and my parents and I in the front. He pointed out every stop sign. I was bored as all get-out and could barely contain myself, driving the country roads for hours that all seemed to be miles upon miles of the same uninteresting landscape. The promise of possible ice cream was barely enough to placate me.

Grandpa declined and the visits were now more frequent from mom. It was taking its toll and mom and dad decided that we would go shopping in Des Moines for a little break. Mom’s sister-in-law, Dixie, worked at Ardan’s and we always stopped in to see her. I remember her stunned face behind the jewelry counter when she locked eyes with my mom; definitely not her usual smile and easy going demeanor. They had been trying to get a hold of us. Grandpa had died. We sat in the car in the parking lot for quite a while. I remember dad saying that it wouldn’t have changed anything if we had been there. I remember the heaviness of the space inside the car. I remember listening and watching my parents intently from the backseat. I remember mom only facing forward.

About 10 years later, grandma started to “lose it”. She had sold the house soon after grandpa died and moved into the new apartment building across the street from our house. About the same time that my brother was having undiagnosed (not for lack of our trying) neurological symptoms, grandma’s dementia seemed to kick in. Her main thing was phone calls to us. Repeatedly. This was 1989 and there was no caller id and probably no answering machine. So we either answered or on occasion, picked up the princess phone handset and put it down on the counter so we could eat dinner without interruption.

I remember the kitchen being hectic, borderline frantic, during the hours after I got home from volleyball practice. Mom would rush in from work, maybe after picking up groceries, and set to work fixing dinner from scratch. Grandma would be burning up the phone lines and it would fall to me to answer since dad was tired from standing all day at his factory job. Growing concern over Mike and his doctor appointments were ever-present.

Looking back, I marvel at how my mom held everything together. From my brother being life-flighted, misdiagnosed multiple times and then finally, my parents putting him in the back seat of their car and driving him to Mayo Clinic where the doctors simultaneously helped him and hurt him. By the time he came out of the hospital eight months later, he was fully, permanently paralyzed.

At the same time, grandma’s concerns were growing and mom was also the primary person looking after her. Everything in our family’s life, especially my mom’s, was reaching a fevered pitch; working full time, having dinner ready every night, a mother who demanded attention every few minutes and a son who was not getting adequately treated for his growing medical problems. I look back in amazement and admiration of how she held it together and got shit done.

Grandma existed in the nursing home for 9 years. In the early years, I would go get her in my car, strap her in with the seat belt and drive a bit too fast, as I was wont to do, back to our house for Sunday dinner. She never complained and I think she even smiled a bit.

Mom has followed in grandma’s path of repeatedly calling and asking the same questions, and insisting on having the same circular conversations. Moving her into assisted living in May of 2021was one of the most stressful processes I have ever undertaken. From searching for, talking to and visiting every potential place in a 30 mile radius to orchestrating the actual move. Mom would fight me, fiercely, and still had the power to throw unforeseen wrenches in it. But we got it done, in spite of her.

And then new problems arose. She is physically quite capable and loves to walk which made for an exciting, if not dangerous, combination. Her relentless quest to find Snickers got her into some hot water and probably annoyed more than I was made aware of. Her determination to figure things out and take care of business caused problems from everything to her hair appointment to paying rent. She had time on her hands and she was going to get things done! Or undone, as the case may be.

I got the call that there was an opening in memory care. She was at the top of the priority list and a decision had to be made by the next day and moved within three. What?! After only five months in assisted living, I made the hard, fast decision to move mom into the place that she would likely spend many, if not the rest, of her years. All of this is in the midst of a pandemic. There had been a covid outbreak in memory care right before I moved mom in and I suspect that is why there became rooms available.

I think mom is worse, mentally, since the move. I don’t know if it’s just the shake up of moving or if she’s really deteriorating that quickly on her own. She calls me and says she’s “losing it” or “cracking up”. She seems to have given up fighting me for control and is usually relieved when she realizes I know what’s going on or have taken care of things. This is huge and was the bane of our relationship for many, many years.

There are trade-offs to her being in memory care. Perceived safety; she isn’t going to go for a walk without someone anymore. Her days of taking off down Grand Avenue, with conviction, are over. She loved to be out in the fresh air but she can’t even get outside on her own. If covid rears its head again, it will burn through that place like a wildfire. No fresh air; all windows have been locked shut with the handles removed. No sunshine or ability to get vitamin D unless a visitor gets her out. It is dim in their shared living space with the couches and TV where many spend much of their time. More money. Smaller room. Less freedom. Fewer decisions, at least for her. I had done most of the “assist” in assisted living with a supporting cast of my husband and a few close, exceptionally kind friends when I was not available. In memory care, I relinquish much of what I was doing on a daily basis to the staff but it doesn’t lessen my responsibilities. It changes them; they shift or they evolve. New duties, and concerns, now emerge.