The cruelty of dementia
I spent three weeks in the US in April helping out with my mom, and while what I saw was very difficult, I have a lot to be grateful for.
I’d been fortunate enough to visit Mom twice even while Australia’s borders were closed, and had the pleasure of two tours of two-week hotel quarantine upon my return home. This time, I didn’t need to apply to leave Australia and I returned straight home, only legally needing to isolate for the 15 minutes it takes to get a result from a RAT test.
Moving through Stage 5
Mom was diagnosed with dementia a couple of years ago. There are 7 stages of dementia according to the medical taxonomy:
Stage 5 (‘Moderately Severe Decline’) is the start of the truly difficult stages: “Your loved one might start to lose track of where they are and what time it is. They might have trouble remembering their address, phone number, or where they went to school. They could get confused about what kind of clothes to wear for the day or season.”
Mom’s short term memory is mostly gone. She does not know her address, her age, and many facts about her current situation — though she can remember things about her grandkids and her new great grandson! Time is a huge challenge — Every day of my visit I ran into someone in the building who said that Mom had told them I had gone back to Australia.
For the last week I was there, her parents became a key topic of focus. At first, she wondered why her parents had not come to visit her. A day later, she explained that her father thought it would be “too difficult for her mother to come visit her, so that’s why they hadn’t visited.” Two days later she told me that “her mother had left early to go to work” and that’s why she wasn’t there when I arrived. My grandmother died over 40 years ago and my grandfather passed around 30 years ago.
Some days, Mom is fully present but just without clarity on what’s happening or what has happened. Other days, Mom is in a fantasy world where she was traveling yesterday, has talked to her dad, and that she lives somewhere else (one day as we pulled up to her apartment building, she commented to a friend that “this is where I used to live”).
And yet, so positive
So many things don’t make sense to Mom but for now she fills in the details with the most positive interpretations: her parents are alive, her husband is alive, she has been traveling, she still goes to church, and the people in her apartment helping her are “an old friend from overseas” or a “summer missionary” instead of a random stranger.
I am terrified of Stage 6. Stage 6 is when personality and behaviour changes begin.We’re very fortunate that Mom is by default a loving person — if I am ever touched by dementia, woe be to all who get near me. I will likely be throwing lava lamps and stabbing people with dessert forks right when they discover it was a wrong diagnosis: It’s not dementia; I’m just a jerk.
Quality of life?
I read Being Mortal a couple of years ago, and a key to understanding aged care is understanding what ‘quality of life’ means for each person.
For Mom, I believe that a quality of life is getting to live on her own as long as possible, and maintain whatever level of independence she can, even as that is smaller and smaller every day. And see her family.
It’s difficult because Mom’s decisions are a viscous cycle: she doesn’t want to move, which makes her less and less mobile. She doesn’t want to drink enough water or eat the right foods, and those accelerate her decline.
Eight months ago, Mom could shower by herself, dress herself, brush her teeth, and even make simple meals for herself. In April, Mom could no longer perform any of those.
The first and last day
When I first arrived, my brother had just visited, and Mom was a little confused about my arrival. Before we went down for dinner, she asked, “How will Bryan know where to find us?” Since my parents called me my brother’s name by accident about 10% of the time, a little confusion between my brother and I is no big thing. I reassured her that I was Bryan (I didn’t even have to put on a fake Aussie accent) and we went down to dinner.
When we returned, I found this note that she had left: She was very confused about who she needed to leave a note for, but she did leave one in the end.
The final day that I cared for Mom was a rough one. Easter Sunday Mom was looking forward to eating lunch with her friends. I arrived early to make sure that the care givers had helped her get up: They had not arrived on time, and so I tried to help Mom pick something out for the day, that she could wear to Easter lunch. Mom at first seemed fine with my choice, but then went back into her closet, and then began to panic. It’s awful to watch someone you love collapse emotionally over the choice of what sweater to wear. You try and remove those choices but it can’t always be avoided. She turned from the closet, and crawled back into bed, sleeping through her Easter lunch, too weak to even walk around her apartment.
My sister rightly suspected that Mom had an infection — when she’s weak and confused, then a UTI is usually present. But that takes time to get a prescription and antibiotics for the right bacteria. Mom was in and out of sleep the rest of the day. I grabbed a cook-at-home pizza and made it because I knew Mom would eat some, which she did.
At the very end of the day, Mom was exhausted from the infection. I was exhausted from caring for Mom. She looked up at me from her bed, grabbed both of my hands, and said, “Your mother would be very proud of you.”
“Mom, you are my mother! I am your son!” I protested. With all other departures from reality, I had done the right thing and played along, but this one had evoked an immediate reaction.
My sister is the hero of this story
While I drop in for two weeks one or twice a year, my sister bears the weight of the vigilance of care every day. Donna has set up a great system involving several different organisations to help Mom out in a number of ways:
- making sure she gets her medication every morning and night
- making sure she gets three meals a day
- making sure she gets a shower and clean clothes
- physical therapy to try and minimise the decline in her strength
- mental exercises delivered by a speech therapist
Just arranging this takes a lot of work, and coordinating it all takes even more, and then dealing with changes or mistakes made by the care givers means you are always on call. It’s never ending — and it never gets better, it only gets worse. On top of that, my sister has to be the bad guy to tell Mom things Mom doesn’t want to hear. So I do my part to help where I can, but it’s a pittance in comparison.
It’s tough to lose your parent little by little.