By definition, Dementia is: A syndrome that involves a significant global impairment of cognitive abilities such as attention, memory, language, logical reasoning, and problem-solving severe enough to interfere with social or occupational functioning.
So, basically, Dementia is a whole bucket full of symptoms that sometimes make no sense and are not easily pinpointed. My mom had been officially diagnosed with Dementia about a year before she passed away, but I regretfully have to say that though we didn’t know it, she was struggling with this illness for much longer than that. In the few weeks since my mom has passed away, with all of the swirling thoughts, emotions, and reflections, I have strangely and suddenly ended my day to day worry of caring for my senior parent. I no longer have to ask, what’s next?
When she got sick, I started researching more, reading more, asking more questions about Dementia, I was amazed at the range of symptoms and the variety of forms that it can take. But perhaps more importantly, when I opened up and talked about it, I discovered so many other friends who were dealing with (or had dealt with) a Dementia diagnosis in a parent or relative. I was so grateful for others to lean on, and question, and compare notes with. I’ll be very frank here in that my mom could be difficult at times, it was a part of her nature, so we simply didn’t recognize early symptoms, we just chalked it up to her frustrations of getting older and taking it out on us.
But – Oh, how I wish I had known what she was struggling with – and what I was struggling against! My mom was fiercely independent. Yet in the last couple of years, her world of independence was shrinking slowly, and closing in on her. She had lived on her own since my father died in 1995, and she relished that independence and ability to do as she pleased, and thrived as she was able to continue to drive into her eighties. But as she started to struggle with mobility issues, good old fashioned aches and pains, and just basically slowing down, things became more difficult, and she needed more assistance. My brother John and I lived close by, so we took on more of a care giving role, getting her to the grocery store, checking in on her more regularly, I took her shopping and to appointments as she slowly stopped driving altogether, (she was not happy about this, I might add…) but she was using a walker, so getting herself in and out of the car had become impossible.
Last year in January, 2018, after an “event” that occurred where she ended up on her apartment floor, (and nearly died), she ended up in the hospital, then went into rehabilitation, and ultimately moved to long term care. It was during all of this that she was officially diagnosed with Dementia, but at that point, I realized just how long she had been suffering with it. All the little clues became so apparent. How did I not see it? We also had the revelation that most of her mobility problems were stemming from her Dementia. And in that moment, it became clear that we could not explain any of what was happening to her in a way she could comprehend. And all she wanted to do was walk.
I spoke with several Directors of long term care facilities as I was searching for the best place for her, and though I knew the answer to mom’s situation in my heart, I would always ask if they had patients who returned to independent living. A few of them said, Yes, in some cases, that can happen. But the conversation that struck me was when one of them responded: We see this happen so often, their world becomes smaller and smaller. They do only the bare minimum, the things they can manage, which becomes less & less. My mom’s last few months in her apartment were exactly like that. Her eating became erratic. She could no longer manage her laundry, but when I came to do it, she was saving face, say Oh, I was just so tired today, I’ll get to it. She could barely get from the chair to her tiny kitchen by holding on to furniture, and refused to use her walker in her apartment. She couldn’t remember to put on her compression stockings, and her legs were always swollen. Much of the time John and I were discussing/arguing with her regularly about getting more assistance, but she didn’t want strangers taking her anywhere or coming into her house – we were just trying to make sure she was safe, and ultimately, we were unsuccessful.
I have agonized and thought so long and so hard over whether my knowing that she had Dementia earlier would have ultimately changed anything about her trajectory. We did not have the capacity to move her into our home. She did not have the means or capacity to live with assistance in a situation she would have deemed acceptable. It was all such a fight.
I understand that I won’t ever know the answers to my questions, and life unfolds as it is going to, I cannot change any of it. But for anyone who is reading this who is dealing with parents or relatives with dementia, the wisest advice we got from the professionals was to realize we didn’t cause it, and that we couldn’t cure it. I did ultimately figure out how to cope with it, but it was through a changed behavior – I had to completely re-learn how to talk to my mother. (Not an easy feat!) I had to delve deep, and take advice from the social workers on how to respond appropriately to her world, her delusions, her irrationality, her fantasies, I had to tell myself over and over: she is sick.
There were definitely moments of clarity and lucidness with her, glimmers of the old Gloria, and my family and I did learn to find ways to use our sense of humor in the best way that we could manage. When she talked about kids climbing in through the windows of her room on Halloween night, we asked her: Did they have any good candy with them? When she complained about taking a shower, my husband would say: Well you have to get cleaned up, you can’t be the stinky kid in here. My brother told her he would bring his shampoo and towel and take a shower first just to show her it was clean. I listened to my son admirably and deftly navigate conversations where she confused his soccer game with his choir concert. We brought her coffee regularly, and took her out occasionally for family dinners, which I know she thoroughly enjoyed.
My last conversation with her was on the phone a couple of days before she died. I was in Baltimore with Joseph at a soccer tournament, and she was in the hospital. She sounded really energized and we had a wonderful, normal chat about his crazy soccer schedule and my upcoming travel the next week. There was no meandering, circuitous confusing side tracked topics. I remarked to my brother afterwards that I couldn’t believe how good she sounded. My sister visited her that day and said the same thing. It was as though we were given a final gift of our mom before she left us. I have given myself permission to remember the mom that I lost years ago, the mom that I could talk to, who could be responsive and caring. I had to shove that all away, so far down, for so long. So, while I don’t miss the guilt, the struggles, and the uncertainty, the what’s next.…I do indeed miss my mom. And those memories are happy ones.