Burn Out

On June 11, 2014, Juan’s and my sixth anniversary, we planned to take Mom out to dinner. I was not very patient that day – was reeling from my lack of freedom and exhausted from Mom’s ever-increasing dependence upon me. It was summer. The world had finally turned green after our long winter, the flowers were blooming, trails opening up and I felt like a caged animal. All I wanted to do was go hiking.

Every book I have read since on dementia says when you are frustrated Stop Everything You are Doing because that’s when accidents happen. Profound confusion is the baseline for a person with dementia and any additional frustration overloads them. They lose their already tenuous orientation to the world and overreact to things that would barely affect people who don’t have dementia.

But I hadn't read those books yet and didn’t understand the overload factor, so bathing Mom while I was cranky didn’t seem risky to me.

I washed Mom while she sat on her shower stool and noticed she was more confused. Had I been armed with knowledge and in a more empathetic state of mind I would have realized the need to be extra cautious. But I went about the bath routine as usual, and when I turned to hang the washcloth on the sink – something I had done countless times before – Mom went down.

I heard her wail as she started falling sidewise off the shower chair, but in the split second it took me to turn towards her Mom was on the floor jammed between the shower stall and toilet.

I knelt down next to her and gently touched her face, arms, head, and hips asking her if she hurt anywhere. She told me she really hurt "down there," meaning her pubic area. While I soothed her I experienced both horror and relief – horror for what had happened to Mom under my care and relief, to be utterly honest, because someone else would be responsible for Mom’s needs for a little while. I would get a break. That's a horrible, horrible thing to say and it doesn’t speak well of my character, but it’s the truth.

Neither Juan nor I could move Mom without compromising her back and neck so we called 911. There was no room for the EMTs to slip the backboard under Mom, but we finally realized we could move her away from the shower and toilet by slowly pulling on the bathmats under Mom. The EMTs successfully secured Mom to the backboard and drove her by ambulance into Missoula. Juan and I asked my brother, John, to meet her in Missoula. After gathering overnight things for both Mom and ourselves, we arrived at the hospital shortly after the ambulance.

Poor thing...Mom had to endure tests and blood draws and waiting while she lay there in pain. Finally, the doctor came in and told us Mom had a compression fracture and four fractures in her pelvic girdle and needed to be in the hospital until she was stabilized. Mom ended up staying in the hospital for a week - a story I'll go into later. I stayed in the room with her the entire time. After spending a week in the hospital she was bound in a corset and moved to Riverside Health Care in Missoula for rehab.

I drove into Missoula five days a week to be with Mom during her rehab and hired a friend to be with Mom on the days I could not. Mom was angry and blamed me for her fall and the fact her entire life had changed for the worse. Believe me, I was mortified that I hadn't protected Mom and apologized to her many times over. But at the same time Mom’s blame angered me. I had been doing my damnedest to wrap my head around Mom’s growing confusion and to address the constant needs it spawned. I felt as if she remembered none of my efforts, which of course she didn’t. Mom’s dementia was taking her out more than my turning away to hang the washcloth on the sink, but there was no way she could ever understand that.

I had never thought I would feel relieved to walk away from a nursing home with Mom in it, but right then I did. I needed to clear my head and ease my heart. I laced up my hiking boots and put some miles under my feet. My sudden freedom was intoxicating and highlighted just how bound in Juan and I had felt. Our plan had always been to bring Mom home after she rehabilitated but I grew hesitant to turn in my freedom. It felt so good to do whatever we wanted, whenever we wanted. What loomed even larger than losing my freedom, was the more intense level of care Mom would need. Because she had fallen on my watch it terrified me to assume even more responsibility for her safety.

Rather than talking with Mom about my uncertainties I bought myself some time by encouraging her to work hard at her physical therapy and assuring her that once she was stronger we would talk about bringing her home. Mom worked so hard that her therapists made a point of telling me how determined she was.

We loved the staff at Riverside – their affection towards Mom was sincere and kept her from feeling invisible – and they were very receptive to our needs. For the first two months Mom responded positively to the increased attention and stimulation. She was less depressed, much more coherent, and formed sweet bonds with a couple of residents as well as staff. It occurred to me that maybe Mom was better off being in a place where there was enough staff on rotation that burn out was not an issue. There was no way Juan and I could mimic that rotation.

All that summer I asked myself if I wanted to bring Mom home but the answer kept coming up “No.” I hiked into the Bob Marshall Wilderness and the Mission Mountains, surrounded myself with wildflowers and alpine lakes, walked the Blackfoot River with Juan, and immersed myself as much as I could during the two to three days a week I wasn’t driving 110 miles round trip to stay with Mom at Riverside. We were fortunate that a friend who had provided respite before Mom’s fall was happy to keep her company when I couldn’t go into town.

Towards the end of summer Mom called me every night in a panic. We tried anti-anxiety medication but she became combative. We moved her in with a quiet roommate but that still didn’t resolve her anxieties. Mom was getting more and more confused and it was taking its toll on her.

The bright light of summer gave way to the rich tones of autumn. Mom and I sat in the River Room overlooking the Clark Fork River and the bright yellow aspens flanking its cliffs.

Despite all of Mom’s therapy she was still wheelchair bound. Her dementia was short-circuiting the messages from her mind to her legs; we had seen this happening at home before she fell. She needed help using a walker and she couldn't move herself around in her wheelchair. She had been so coordinated in her life and now this.

Mom looked sad as she studied the colors along the river and said to me "Randi, this view leaves me cold." That did not bode well. I knew the whole ordeal had exhausted and disheartened her. All Mom ever wanted was to have family nearby and I had promised her I would take care of her. As I watched Mom I felt myself shift inside, as though a wind had blown through me. There was no thinking involved – it was a visceral thing. Mom’s life force was waning. It was time to bring her home.

Juan and I sat by the campfire and talked late into the night. He asked me how I’d handle being confined after tasting freedom. Mom’s mental state was far worse – would I have the patience for that? I sure hadn't before. And unless I wanted to hire someone to take Mom to the bathroom, I would only have a two to three hour window between Mom's bathroom visits in which to get outside while Juan covered for me. I assured Juan that I had been studying how Mom’s nurses, CNAs, and therapists had cared for her and felt I understood dementia much more. I knew in my heart I could do a better job without burning out. In the end, Juan looked at me and said, “This is not your mother’s process, this is not my process, it’s yours. I will support you in whatever you need to do.” (Remarkable man, eh?)

I knew all the caveats to bringing Mom home but this was not about what I knew – it was about what I felt. It was inexplicable. After three full months of not wanting Mom near me I was overwhelmed with a need to bring her home.

Juan and I arrived at Riverside on October 18th to pick Mom up only to find she had had a mild stroke that morning. Mom was listing to the left and could barely speak. She was leaning so far forward in her wheelchair that I had to strap her in.

Confused about whether or not to bring Mom home, I consulted with the nurses. Gently they asked me if I wanted Mom to go through rehab again, the prescribed treatment if I took her to the hospital. There was no way I wanted Mom to endure rehab, so with the nurses' blessings, we brought Mom home.

Dementia is now a main character in our house. We respect its power and no longer try to reclaim who Mom was. Instead we connect to who she is in each moment, knowing that can change in a heartbeat. Mom can be lucid one minute and then completely confused about the chocolate pudding in front of her the next. There’s no way to predict. We’ve got to stay loose in the saddle if we’re going to stay on this ride.

Mom is now on Hospice, whose existence has made caring for her at home possible. We are so grateful to have round-the-clock support and insight, and no longer feel isolated. Juan and I focus on creating a calm environment, assuring Mom daily that she is loved, and laughing as much as possible. One of our best resources besides Hospice is Jolene Brackey’s book Creating Moments of Joy.

We have learned a great deal about caring for a loved one, maneuvering dementia’s convoluted curves, and perhaps the hardest – managing our strengths and our shortcomings. We’ll give Mom our best shot.