Dementia reared its ugly head in a friend’s circle of acquaintances. I decided to write this post as a way of showing support. I felt that learning about the effects and consequences of neurodegenerative diseases happens through open communication.
Writing was more painful that I had expected. I am finally finishing this post three and a half years after I wrote my first draft. (It’s long, so if you don’t want to read it all, hop to the second to last paragraph and the two pictures at the end.)
“If only we could have seen the symptoms in time.” I’ll bet everyone close to a person with dementia thinks that thought. Hindsight always has perfect vision! It’s tricky, however, because what is a symptom? Maybe we are naturally “loopy”, “forgetful”, and so on? Some changes are gradual. Some changes are symptomatic of other matters. I am not a doctor, only the daughter of a woman who was diagnosed with vascular dementia in May 2007. I may shock you with the things I say about my Mom. It’s not my Mom, however. It’s the disease that I am describing, and, as the daughter of a teacher, I believe in the need to discuss and educate. These are my personal observations on the “what if” question.
Mom had rotten vegetables in the refrigerator
I discovered this when I came to visit her in May 2007, just before her diagnosis. Because my mom and I lived on two separate continents, we didn’t see each other that often. I have no recollection of what I discovered in the refrigerator in 2005, the time of my last visit. Perhaps there were signs, but I missed them.
The signs in 2007 were much more evident and made me go through all her food in the kitchen. She lived in the US where (I find) the production dates and “best before” dates are rarely stamped on packages. In addition, she was vegan/vegetarian and shopped at many farmers’ market places where, again, no dates are used. It is up to users to go home and mark dates on their purchases. I doubt someone developing dementia would easily think of that.
How in the world could anyone have seen the rotten vegetables in my mom’s kitchen? That would require a certain intimacy to be able to go and look in someone else’s drawers, cupboards, and refrigerator – and then to point out the error of their ways! Of course, rotten vegetables could just be a sign of a sloppy housekeeper. On their own, perhaps it is nothing.
Mom couldn’t plan anything
Mom talked about learning to use a computer for years. Like a good little technical communicator daughter, I wrote out detailed how-tos – in pen in a notebook! My latest instructions from 2005 were left on a window ledge in the sun. In 2007, they were barely legible. The ink was faded, the page was dusty and curled. Yes, the notebook was in the same spot on the window ledge. Who would notice that? Of course, over the years, I snapped at my mom about her lack of computer training. Yes, I snapped. When we spoke on the phone and she repeated for the millionth and umpteenth time that she wanted to take a course in training at the library or something, I snapped. I was so tired of hearing the same old statement and not seeing any results. I had no idea that mom was probably losing it at the time. Little mini-strokes were chipping away at the woman who had raised me and given me so many opportunities in life. My mom was slowly disappearing and I didn’t know it. I was just snapping at her.
Mom was forgetting things
Mom left her mini-oven on one day and went out the door with a friend. Fortunately, there was only nasty smoke and no other damage. Her version was that she had put something in to warm up, a friend buzzed the front door to say she was there to drive Mom to some planned event, so Mom got her things together and went out the door. She claims the call flustered her so she forgot the food in the oven.
That could well be true. Such a situation requires a certain overview, which is hard or impossible for a dementia patient. The food needs to be dealt with, and her getting-ready process needs to be dealt with. The idea of someone waiting for you can also add stress. Anyone could mess up that situation. On its own, a simple mistake. Mom also forgot her apartment door key all the time. Scatterbrained? She forgot to pay her rent on time and then tried to put blame on the apartment administration (to cover up her own fear of something being terribly wrong?)
Mom lost time
This realization became more evident after her diagnosis. She complained her clocks were all wrong, but a check by a neighbor proved that all clocks showed the same time and were correct. The test the neurologist gave Mom included drawing an analog clock: a circle with the numbers placed correctly. Mom made the circle, then she placed all the numbers randomly ….
Mom often went to bed in the afternoon. Nap time, you’d think. My interpretation is that she felt a need to sleep and went to bed with the whole nightclothes-and-teeth-brushing routine. After all, sleep comes at night, and that is what you do when you go to sleep at night. I would phone at midnight my time – 18.00 her time. She was just getting up to start her day! It was light out and she was in bed, therefore, it was morning. I had to use all my persuasive skills to make her stay in. Later, I learned to drop logic. It served no purpose, but I had a hard time letting it go. I was often “saved by the bell”. Her TV went on automatically for the evening news. It blared in the background, saving me in the middle of some fruitless argument. When her TV went on the blink later, I lost that bit of help. She even walked out of the apartment building to go to her swim lessons – when it was nearly midnight. Her circle of friends became seriously concerned. It was hopeless explaining things to Mom. She once hung up on me in disgust at my silly nonsense about time.
I could go on with small, personal anecdotes that make me realize there was a sequence of mini-strokes building up to something bad. I don’t think the best detective could have put the picture together any earlier. Again, you’d have to be watching over mom’s shoulder to catch mistakes as she went about her day. Mom had many friends and went to many activities. She volunteered in so many places and participated in luncheons and gatherings of all kinds. People cared about Mom and loved her, but isolated incidents could easily be dismissed with a kind shake of the head.
Then I received a call saying Mom “was different”. She changed overnight in front of people. It was reported that a sort of fog seemed to descend on her. This must have been the tipping-point mini-stroke. That happened in April . I received the call about a month later because the wonderfully angelic social worker in Mom’s building was trying to figure things out before contacting me. Stroke was ruled out immediately and no scans could be done because of Mom’s pacemaker. I flew over and discovered Mom was not eating regularly and not drinking enough water. (When Mom finally got into a nursing home at the end of July and had a regular schedule for food and drink, she became so much more alert that I thought her dementia diagnosis was a mistake. Typical reaction.)
I call this disappearance of my mother her first death. The person I spoke to on the phone was no longer my mother. I was left alone with the memories. I repeated tales of my childhood and her childhood to her. There was no recognition. I thought I detected some sadness in her voice at this. I think she was sad that I was obviously not getting the reaction I wanted (her recognition). I didn’t sense that she was sad at her condition. She was already somewhere else.
Mom was undernourished and dehydrated
I am not a doctor, but that is my opinion of Mom’s condition. While visiting, I made her nourishing food and made her drink water on a regular basis. That was an unpleasant and weird experience. She would choke and splutter on a glass of water as if she didn’t know how to drink. I had to tell her repeatedly to take small sips. The water bottle that she liked to carry was full of cloudy water. I didn’t need a microscope to tell that the water was filthy. Think “ewww gross!” She never cleaned the bottle. I bought a new water bottle and that seemed to be more manageable for her.
There was one food episode that freaked me out. I was preparing a veggie stew for dinner while Mom was parked in front of the TV. (Definitely bad sign. Mom hated TV with a passion and only tolerated educational TV and news from the local public service station. During my visit, I could watch any mind-rotting show I wanted to with mom, and she never protested.) Mom came into the kitchen and took a bowl and spoon from the cupboard and shuffled over to me standing at the stove. My mind was already putting two and two together because there was so much detail in the tableau unfolding before me. I asked her what she wanted. I was freezing up at the sight of my Mom looking like Oliver Twist from that musical film of my youth. I realized instantly that my mom was 83-going-on-5. The horror that ran through my blood at that thought…. Mom said she wanted food. I told her it wasn’t ready and to go and wait. She placed her bowl and spoon on the counter and shuffled back to the living room. She never talked about setting the table for the two of us. She never mentioned my needing food. There was something pavlovian about her reaction to my cooking. Totally self-centered. And Mom used to be all about setting the table, folding fancy napkins, and so on.
The day before I left mom on that May 2007 visit, we went shopping. A bus came once a week to the apartments and took the ladies (there were a few men, but you know the statistics for the elderly – the women live longest) to a large supermarket for one and a half hours of shopping pleasure. This was a fun little outing, and we took our time in the store. I noticed that it was time to finish our shopping and get ready for the bus, when I suddenly realized all that mom had bought for the coming week was two tomatoes! It clicked. Mom couldn’t plan because she had no sense of time. I dashed around and grabbed some canned and dried food that I knew could keep her going for a while. I had no idea how things would work out on future shopping trips.
The moral of this section is: watch what elderly family members are eating and drinking. It is crucial. Lack of adequate hydration in the elderly is a shove in the wrong direction for their health.
Mom’s smile could light up a room
I’ve mustered all my logic in trying to analyze and decipher the mystery of dementia. Nurses told me to forget logic. It is powerless in front of a person with dementia. Still, I fought hard as thought I could solve the mystery and bring back my own mother from wherever.
In all the dementia destruction, one wonderful thing happened. Her smile never disappeared. Dementia did not take that from us. When she was in hospital recovering from a near-fatal stroke a year before she died, I asked her to smile for me. It was like turning on a light bulb. A year later, a month before she died, I gave her a big heart-shaped balloon for Valentine’s Day. Mustering all her strength, she gave me one of her smiles. I will treasure those smiles forever.
August 17th has always been a special day for me – my Mom’s birthday. I’ve been thinking about her a lot today. Those thoughts led me to finish this post. If you encounter dementia or Alzheimer’s in your circle of friends and family, contact your local dementia or Alzheimer’s society. They have hotlines for answering your questions. I know they work. I’ve used them. This can’t be done alone.
Today, I also took the opportunity to dwell on two of my favorite photos of her. One shows her age four, posing for the camera – in a children’s beauty pageant, which she won! The other sums up a lot of her life. She is dancing a folk dance – barefoot – in Paraguay, where she worked for the Peace Corps for two and a half years training special education teachers. The photo quality is awful, but her happiness is showing, and her smile is gorgeous.