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.
Last week, the Waterloo Wellington Dementia Network hosted a very successful one-day educational event for professional care partners. The focus was the importance of developing good rapport and caring relationships with those that the health professional supports in particular persons with dementia. Two speakers of the event included Mr. Bob Kallonen, Chief Operating Officer of Schlegel Villages, and Dr. Elaine Weirsma, PhD, Associate Professor, Department of Health Sciences, and Advisor, Interdisciplinary Certificate in Dementia Studies, Lakehead University. Their goal was to challenge the approximately 110 participants to enhance relationships between all carers.
A few days ago, My Girls and I packed up the car, jumped in and headed off for an adventure. We love adventures, and this was one we had been looking forward to for a number of weeks. Our destination was Miller Lake located up in the beautiful Bruce Peninsula. My friend, Sue, has a family cottage right on the lake. We planned on staying up for two nights with her and her husband Pete. Sue and I have been friends since grade six. That means 34 years. It's an easy friendship where at times we can go for a long period of time without chatting with each other. Just recently, we have rekindled our relationship and have picked up where we left off. Our relationship goes back to a time of childhood – prior to our significant others and children. It was a carefree time of riding bikes, playing endless card games, fishing and swimming. As we grew up, our lives naturally changed as we met our soul mates, became parents and followed our careers.
One of the first poems I learned was “Casey at the Bat” by Ernest Lawrence Thayer. It is my favourite poem telling of the story of the crowd hero, Casey, of the Mudville town baseball team. You are kept on the edge of your seat, stanza after stanza, until the final sentence of the poem when you learn the outcome of his turn at bat. Yesterday, much like the crowd described in this poem, I was on the edge of my seat, watching our niece, Brontae, play baseball in the championship game at a local tournament. It was an even match of experience and ability. Depending on which side you were on, cries of “nooo...” echoed the umpires “striiiike!”
St. Valentine's Day is one of my favourite holidays. I am not the roses and chocolate type of girl, but rather homemade cards, and a special dinner at home. In our home, the feeling of love intensifies as February 14th draws near. Because of my fondness for traditions, I also have one for this marked day of love. Every year, I make my Valentine a homemade card professing my love. It is a tradition that My Girls have greatly enjoyed for the last 10 years. My brother Mark, has been making homemade Valentine cards for his Valentine, Mary Anne, for over 20 years. Mary Anne, proudly displays these works of art, days before the big event. I'm always amazed at my brothers' talent, as every year he produces a new unique card. It is from him, that I have borrowed this idea.
Prior to the Anatomy Act of Ontario in 1843, there was not a legal process for the medical community to obtain corpses to be used for dissection or anatomy lectures in medical schools. Instructors had to rely on body-snatchers for cadavers. In the late 1870's, in Ontario, a cadaver could fetch $30 - $50. (Body-Snatching in Ontario. Royce MacGillivray). Thankfully, laws now regulate how a corpse can be obtained, and mirrors the need for necessary studies and research.
The door bell rang. I could see a tall figure holding a large box. My supplier was here. I opened the door and let him in. He had not been here for a delivery in a few weeks. We gave each other a warm hug and proceeded with pleasantries. I eyed the box and waited in anticipation for him to hand it to me. He slowly took off his boots. I continued to wait. We walked towards the kitchen where, finally, he gave me the box that held my supplies. I love that moment!
Today is a historical moment in the Catholic Church. Pope Benedict XVI prepares for his final day as the head of the Catholic Church. He has become the first Pope in 600 years to step down. In his last speech to The General Audience of over 150,000 people, he stated, “...I have come to the certainty that my strengths, due to an advanced age, are no longer suited to an adequate exercise of the Petrine ministry.” He will leave the Vatican for the last time and be brought to the papacy's summer retreat castle. The Swiss Guards who protect the pontiff, will march away and this will initiate the “sede vacante” - the empty seat of St. Peter. (http://en.wikipedia.org/wiki/Sede_vacante). Pope Benedict XVI's eight year papacy will formally end.
It was all said by a box of Krispy Kreme donuts. Last night, Brianna (Bri) was at work at Walmart. She told Dawn that she was bringing home a surprise for me. Bri knows I like surprises. This morning when I went to make my coffee, I found my surprise on the counter. It was a box of Krispy Kreme donuts.
These last few days, I have had a touch of melancholy. I think its because of a combination of the long winter, the wet dreary days, and I've been fighting a cold. Some Canadians might also call this The Winter Blues. As I was lying on the couch, debating whether to do research for my new MAREP project, I glanced out of the patio doors. It is a grey, rainy day. At the back of our large yard, something caught my eye near the bird feeder. A red cardinal flew to the feeder.
In November 2013, in partnership with Murray Alzheimer Research and Education (MAREP), a group of individuals living with dementia and their care partners, came together to discuss the lack of both anOntario and national dementia strategy plans.
Do you ever get that song stuck in your head that just keeps playing over and over? I do. It happens to me a lot. Yesterday, while watching CBC news, there was a segment on this phenomenon. These mental tunes are nicknamed “earworms.” You learn something new every day! For about the last year, I have started to sing to myself – or to my dog, Shiloh. I can assure you, I was never much of a singer. But things have changed. I often catch myself doing this and sometimes I even add in a few dance steps to accompany the music.
Back in the day, I used to be a Sr. Business Analyst for a large well-known software company. This job afforded me wonderful opportunities of working with the very brightest and dedicated individuals across many global business units.
Some days are easier than other days. Today, has not been easy. I had an appointment with my Geriatrician this morning. The last time I saw her was September 5th, 2012 when she diagnosed me with Frontotemporal Lobe dementia (FTD). I walked out of that appointment before it was finished. I did the same thing today.
By Mary Beth Wighton, Person with Dementia Date: Jan 27th, 2013 Growing up, I was an excellent athlete and was on many top-rated teams. I played basketball, volleyball and soccer. Those teams excelled from winning locally to competing at a national level. My status on the teams varied from a “bench warmer” to being captain. Therefore, it really did not surprise me when I was diagnosed with Frontotemporal Lobe Dementia (FTD), that I wanted to be part of a team fighting for people with dementia.
By: Mary Beth Wighton, Person with Dementia Date: 2012-12-20 I'm not much of a gambler. Once in a blue-moon, I like to buy a lottery ticket. I carefully choose my numbers, cross my fingers, and hope for the best. Then I play the fun game of; If I won a million dollars I would .....;
If you believe 2012 doomsday theorists, the earth as we know it will end in 4 days on December 21, 2012. Whether it is from the end of the Mayan calendar or some incredible planetary collision, life on earth will end. Television movies depicting the end play over and over again. The news captures religious fanatics holding their signs high to “repent.” It has made me pause and wonder. I do not believe in 2012 doomsday. I believe God has his own agenda.
By Mary Beth Wighton, Person with Dementia Date: 2012-12-14 I love tradition. I come from and am part of a family of traditions. Growing up, holidays were always a time of making the same yummy recipes, putting up the same Christmas tree, visiting the same people, telling the same funny stories, and putting up the same homemade Christmas stockings for Santa to fill. As I grew older, I took with me many of these traditions and eventually introduced them to my own family. One of my favourite tradition is decorating our Christmas tree. Eight years ago, when we celebrated our first family Christmas together, we began the tradition of going to a local tree farm to buy our Christmas tree.
I Have What? September 5th, 2012, 9:00 a.m. St. Mary's Hospital, Kitchener, Ontario, Canada. As I drove us to the 9:00 a.m. meeting with Dr. Didyk from Geriatrician, many thoughts ran through my head. Here we go, another appointment with another doctor. One more stupid test. I hate when they ask me to write down the clock time because I know what time it is. I'm looking forward to my Timmy's coffee.