I have been a law abiding citizen for all of my life- well, give or take a speeding ticket. I respect police officers and appreciate their work in helping to keep our streets safe. Therefore, it was a strange experience to be sitting in the front seat of our care being questioned by a policeman about my recent disturbance in a computer store. It never was suppose to happen like it did.
When I say I have dementia, there is usually a stigmatized response: "Gee you don't look sick." "You are too young to have dementia." "I'm not good at math either." "Everyone gets forgetful. What I find surprising is that some of these stigmatized responses come from people who know me, have direct contact with me and are recipients of my advocacy work. It is as if they don't believe I have a disease that has no cure and ultimately will die from. One such person said that I "...can walk and talk so I'm fine."
I am emerging from a week long “FTD funk.” This is what I have termed as a Frontotemporal Lobe Dementia (FTD) induced mental fog. Symptoms of this disease such as lack of motivation, apathy, irritability, forgetfulness, poor decision making and difficulty in word finding descended upon me and warped my clear thinking – just like fog. While in this fog, I realized what was happening. It is hard to describe it to someone who has not experienced it. I reached out to to a new friend who has dementia. In my email, I described to her my frustration with this fog. It was interesting, because just by writing to her, I felt a bit better. Her response with words of wisdom and an offer to be a sounding board helped in clearing my head. This once again has reminded me of the importance of friends – young or elderly, new or old. When I was first diagnosed, my sister told me how I would meet new people who would help me in my journey. The wisdom of my older sister has proven true.
The smell of urine has not left me. Yesterday, Dawn made arrangements for us to visit a long-term care facility. At 2:00 p.m. we arrived. It a nice looking building. I sat on an outside bench trying to absorb what we were about to do. We were here to have a tour looking to access if this could be a suitable place for me to one day live at. It started last week, when my case worker from CCAC gave me the necessary paperwork to fill out for submitting my preferences for long-term care. Having Frontotemporal Lobe Dementia (FTD), I will eventually require a great deal of care. It is our hope that I will always remain in our home. We will hire necessary workers to assist Dawn. Our home will be modified to accommodate my changing needs: bathroom renovations, wheelchair ramp, stair lift, etc.
I have insomnia. I was sleeping for a bit, but then woke up. As I lay in bed, I began to think about the day I had. I know I have to write about two extraordinary events. To set the tone of the day, I need you for you to think of Louis Armstrong's song, “What a wonderful world.” To help with your humming, here are the first few lines of this beautiful song: “I see trees of green........ red roses too I see em bloom..... for me and for you And I think to myself.... what a wonderful world.”
In a conversation with a person you have just met, it is common to ask the individual what she does for a living. I find this question to be awkward. What should I say? I'm sick – I don't work? I have dementia – I don't work? I am disabled – I don't work? None of your business? I'm sure you can see my dilemma. I ask myself, why do I find the question awkward? The reason is because I have been raised with the Protestant Work ethic. From a young age, I was taught that it was important to work and it gave me a sense of pride. Today, because I have Frontotemporal Lobe Dementia (FTD) I do not work and therefore, the feeling of pride has left me. My first job was that of a T.V. Guide delivery girl. I was probably about 9 years old. I had a little white shoulder bag with the books in it. I would hike up and down our street and give people their guides. This job has obviously gone the way of the dinosaur!But, I'll always remember the source of pride it gave me and the feeling of the jingling coins in my pocket.
I come from a line of proud Scottish gardeners. I am told that my Great Grandfather was an estate gardener at Ardclach, Nainshire Scotland in 1902. As far back as my memories take me, I can always remember my parents working the soil producing beautiful flowers and vegetables. My father always tried to grow roses with varied success. He liked to present my Mom with a rose showing his love for her. How sweet is that? My parents have not put in a garden for the last few years. Although, they did have a few plants on their balcony. Just enough to get their hands dirty; and have something to show-off and talk about. When they downsized, I had the good fortune to obtain my fathers long gardening shovel. I don't know how old it is, but it was his favourite. It has moved a lot of earth in its time!
This past May, Dawn and I began our search for finding three possible long-term care facilities for me.To remind you, it is our hope that I will always remain at home, so this is putting a “plan b” together – just in case. It is discouraging in that I have yet to hear of anyone who has later stage Frontotemporal Lobe Dementia (FTD), live at home until the end. In particular, bvFTD, the kind I have, it is very difficult for the carer to manage the challenging symptoms and possible aggressiveness. CCAC is waiting for me to return the paperwork listing up to three facilities. Due to some facilities that have up to a five year waiting list, it is important I submit my paperwork in a timely fashion. That basically means – now. As we drove to my second long-term care facility, I tried to be positive. The first facility we toured had an incredible urine stench in its one hallway. I tried to push that memory way back in my brain. I know they can't all be like that.
When you have Frontotemporal Lobe Dementia (FTD) like me, you can expect to experience different symptoms. Some symptoms never leave and others may go as quickly as they come. Some examples of symptoms which I have experienced/experiencing are: ➢ Impulsive ➢ Lack of empathy ➢ Poor judgement ➢ Impatience and aggression ➢ Withdraw of interest in activities ➢ Trouble finding the right word ➢ Easily distracted ➢ Memory loss ➢ Lack of attention to personal hygiene ➢ Muscle spasms ➢ Drinking to excess ➢ Swallowing problems ➢ Abrupt mood changes
For most of my life, I have been a “cat person.” I have had many beautiful cats that have entertained me with their personalities. My all time favourite was a Main Coon named “Jack.” Jack the Cat was rescued by my friend Marie. He was in terrible shape due from being out in the cold winter, lack of food, water and warmth. After a visit to the vet, Marie and Theresa brought him to my home. When he was let out of his cat carrier, I almost fell over looking at the sight of the most ugliest cat I had ever seen. The vet had to shave him right down because of his matted fur. We laughed at this craziest looking cat. Another friend, Linda, coined the name: Jack. This is a short-form for the cat “hitting the jackpot” on living with me. Eventually, he turned into a beautiful big boy of 20lbs.