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I finally turned around and saw dementia’s ugly, unwanted face

Originally posted October 3, 2017.

My mom passed away the summer of 2017.

I didn’t have the emotional stamina for writing about it as we lived through it.

My mom lived alone until she was 90 years old. She was in incredible physical shape. She walked three miles a day. Twice a day, she took her little dog out for a mile and a half walk. She had lots of dog walking friends with whom she chatted on those walks. The shopkeepers on her path knew her and she bought coffee in the small stationary store along her way.

And no doubt she engaged daily in the Japanese practice of forest bathing. She lived nearby my home in beautiful northern New Jersey, among the Eastern hardwood forests. Where the trees are dressed in greenery and flowers in the spring and summer and in bright red, yellow and orange in the fall. And the sun sparkles endlessly on the lakes.

How did I come to know that she was suffering from dementia? It seems so strange that I didn’t see it for a long time. Of course, in hindsight, and when I see it now in my friend’s parents, it’s obvious to me. Strangely, it’s never obvious to my friends.

Dementia kept knocking at my door until I finally turned around and recognized its unwanted and ugly face.

I’m in healthcare, so it weirds me out I didn’t see it sooner. But I had no previous experience with dementia or Alzheimer’s disease. She never asked for help. Although we saw each other often, every week, I just didn’t see the signs.

I think my mind kept seeing her as she once was. My mom, so independent, always wanting to travel, to see the world and marveling everyday at the beauty in the world. She was interested in fashion and color, beauty in the home and cooking. A voracious reader with a broad vocabulary and a rich, artistic inner life, she loved to read biographies. We bought her books to read until the last six months. She read every day.

Her personal characteristics were still intact, even as the disease progressed.

My mental map continued to see her as used to be, and filled in the gaps. Thus, I masked her slow decline.

Every year, I would take her and my son down the Jersey shore for a four day weekend trip. One year we went to Long Beach Island and I remember playing miniature golf. We had the best time! She was laughing like a little kid and she began to throw the ball instead of putting it with a golf club! It was the funniest time!

Once an adult, twice a child.

Another year we went to Cape May. We had a grand old time, doing what everyone does in Cape May.

We stayed on Ocean Boulevard. We went to the beach, sat under a beach umbrella. We walked along Ocean Boulevard. We ate at the Peter Shields Inn (PSI as it’s called) and marveled at the food! Of course we ordered a bottle of red wine from the local winery.

We walked far along the beach at twilight, a pretty arduous walk. Mom, in her late 80’s, still kept up with us, albeit we walked at a slower pace. Twilight is when you see the most dolphins at Cape May and we weren’t disappointed! We saw a whole pod of dolphins! (google that – “what do you call a school of dolphins?”)

Anyway, after we ate and walked, we went back to the hotel and watched some TV. My son had a room adjacent to Mom and me. But he came in to watch TV with us. After a bit, he got up to go back to his room and Mom said, “So, are you two leaving now to go back home?” We were baffled as we realized that she thought we were at her condo and were getting ready to leave. We said, “We’re in Cape May and we’re all staying here tougher.” She just said, “Oh, I’m just a little tired. “

I just didn’t realize how much her mind kept going in and out of remembering, of filling things in. Maybe she didn’t either…

The next year was the last trip we took with her. We drove up to New Hampshire for a week long stay. We always bring our dogs to NH as they love to go hiking, too! She was to come to our house with her clothes and her dog and we’d leave early the next morning. I called her to confirm and she said she was on her way.

When she arrived at the house, she didn’t have any clothes to travel with. We were like, “Where are your clothes? Did you remember we are going to NH?” She just didn’t say anything; she just brushed it off. We decided to just get a move on and pick up sneakers and clothes for her at Walmart the next day as it was pretty late in the evening. That trip was great fun, too. She was about to turn 90. And we all hiked up the Rattlesnake Trail where there are great views of Squam Lake. She was amazing. She loved it. The dogs loved it.

Man, I hope I can still hike Rattlesnake at age 90.

I didn’t realize that people who are developing Alzheimer’s are good at covering up their deficits, and the people around them are so good at loving them they just can’t see this. “Covering” is what the people at assisted living kept calling it.

Life went on.

But then, the two weeks came when I had to notice things were different.

I went to visit her, like I usually did, and things seemed ok. The condo seemed a bit dirty, but not too bad. Her clothes seemed a bit dirty, but I just wasn’t sure….??? I opened the fridge to get something and out fell a pre-roasted chicken – you know the ones in the plastic tubs roasted in the stores? Well, there were about 7 of them in the fridge. I was like, “What’s this?” She just didn’t say anything. So I said, “Well, I’ll clean out the fridge for you.” And I cleaned out the fridge. I asked if she was ok and she said yes fine.

Well, the same thing happened next week. I was so…puzzled.

I emailed my siblings to let them know something was up. We weren’t sure what to do. Move her now? She didn’t want to be moved. She protested this vigorously whenever I brought it up.

That week, I got a call from my mother’s veterinarian’s office. The women was so kind. I don’t know how she got my phone number. I guess she wrangled it out of my mother somehow (???). She said they were concerned about my mom as she had come to their office three times that week, insisted her dog was sick (her dog wasn’t sick) and seemed confused. She said the doctor wanted to call the police but she felt she should call me. I was hoping this wasn’t what I thought it was. I considered the options. It was late afternoon and I was at work. I thanked her. I was glad she called me, boy.

I guess I still didn’t understand the full implications of my mother’s illness.

But then the very next day, my own veterinarian’s office called me. The woman at the front desk knew me well. She said my mom had called their office several times and wanted to know how to get to their office as her dog was sick. Again, I was at work. I again puzzled over what to do. My mom had said over and over again she did not want to go into any assisted living or live with me.

But there wasn’t much time left for my mom and her independent life.

The very next day I received a call from the building manager at her complex. Mom had locked herself out of her condo and she was in a night gown. Her neighbors were helping her. I was in the middle of big work day, with a full slate of clients to be seen. I had no way to reach 10 people and cancel their appointments. I called my son who luckily was now driving, and asked him to pick up his Grandma, pack a bag of clothes and her dog up and bring her to the house.

And that was pretty much it for her independence. As she stayed with me, I could then see how much the illness had taken her over. The episodes of paranoid delusions, anger, and confusion came on during the sundowning times, late in the afternoon and at night.

The sundowning episodes were frightening and went on for hours.

She was very angry and disconnected from reality. She couldn’t sleep and neither could we, as she ran all over the house in a rage. She was sure I was out to get her and that she could still live alone. She tried to run back to her condo at midnight one night and scratched at me in anger when I stopped her.

When she was calm, she seemed to have no awareness of what had gone on the day before, as far as her actions and emotional states.

Every new day was Groundhog’s Day.

I knew she needed medications but I had no experience with this type of disease. I didn’t know what to expect. It was the beginning of a long weekend and her doctor was swamped and was unable to help us. I called my own doctor and begged him for help: a sedative. Wisely he said, no emergency room, as that would be horrible. And the dear man prescribed her some xanax at a low dose (although that is not the medication that should be used with the elderly) to help get us through the weekend, until we could see her own doctor. My pharmacist somehow got her Medicare information up on his computer and filled it for us. So we had a little peace that weekend.

She never went back to her condo to live. The Alzheimer’s claimed her mind slowly. She was, understandably, very angry that her capacities were waning. Wouldn’t you be?

Finding a long term solution was a struggle. I’ll cover that part when I’m up to it at another time. Thank you for listening.

What lies ahead for an elderly person renders truly helpless with dementia in America? Scary to think about this and to think of what will become of our senior citizens without Medicare and Medicaid. If you don’t believe these issues are important, you don’t recognize your privilege.

Read my poem about this journey here Footie, I am 6

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