Home Care Assistance Montreal is the only home care solution offering an innovative, science-based approach to aging. We elevate the standard of care for seniors everywhere. In “Care Diaries”, we feature heartfelt stories from Canadians telling their current life stories about the reality of caring for someone with Alzheimer’s.
My brother Bruno and I were close to our parents all our lives. Bruno is the father of three beautiful children and their home is further away. As for myself, I don’t have kids, I simply found it easiest to keep a eye on both my parents.
My mom, by nature, was rational and caring. She never brought up the topic of senility around my father. I don’t think she wanted to believe that he was a good candidate for dementia. Even though we knew my dad’s mother, brother and aunt all showed signs of senility or mental deterioration in older age, it was a topic my mom didn’t feel necessary to bring up.
My dad started showing signs of memory loss in his late sixties. It was when he starting living alone, after my mother died, that it became most apparent. My mom passed away when my dad was 70. My father stayed in their home until he was 81. He is now 84.
My dad is the laid back and easy going type.
When we were growing up, it was my mom that ran the house. She managed the budget and kept things in order. He didn’t even want a credit card! He would stay home in the summers while my mom visited the family cottage, amusing himself at festivals and art shows.
My brother calls him the “happy camper”. Everyone has always said my dad is cute. He’s always smiling. Always making jokes, making people laugh. Everywhere he goes, he’s kinda the class clown, you know. On the bus, at the grocery store… <laughing>
He was a bit ahead of his time in a way when it came to gender roles and housekeeping. I knew he could maintain the house when my mom passed because he always did when my mom was at the cottage. He absolutely loved caring for their garden. His free spirit resulted in an independent outlook all his life. He knew how to take care of himself.
When his memory starting going, he’d make excuses. He blamed it on the plain old aging of a true artist. He was perfectly capable to keep doing the things he loved like playing the piano and giving singing lessons. All he wanted was to maintain his normal lifestyle.
But every time Bruno or I would go over, it was like “what kind of surprise are we going to find today!”
My father would forget the password to his alarm and set it off.
He often left the door open.
Lights would be left on throughout the house.
Many times he forgot to turn the elements off on the stove, and burned pots and pans or his food while cooking.
My brother and I would talk about it and wonder whether my dad’s age-related “quirks” were normal or not.
My gut told me it wasn’t normal. We finally consulted a neurologist in 2011 and the diagnosis was advanced frontotemporal dementia. It is a disorder that primarily affects personality, understanding, behaviour, and language.
With my father living alone, I started to act as his primary caregiver, volunteering at least 15 hours a week. I was taking my father to all his medical appointments and outings (including the opera!), doing his groceries, cooking, cleaning, washing his clothes, taking care of his bills and generally organizing his life.
My father gave singing lessons at his home for 50 years. Until we moved him out of his home, I was coordinating his classes, contacting his students, being at his house when they would arrive, etc.
After about 4 years, I was drained.
Based on a referral from our social worker at the local clinic (that we call the CLSC), we hired a cleaning person. The cleaner was to be helpful to report any incidents that we may not be aware of as he was trained in elder age care.
I find this disease comes and goes when it wants. It’s bizarre. Like a cloud and “puff” it’s suddenly gone.
One time, my father exhibited his paintings at a community center. When he wanted to go carry them there, he called me to take him because he had his car stolen. He told me that he called the police and made a report, and that the police had even seen the footprints of the thief in the snow. I thought maybe he had parked his car in the street instead of entering his yard, so when I went to get my dad, I went down the street … and the car was parked just in front of the house! My father, still convinced that he had been burglarized, had the following reaction: “How come the thieves returned my car right in front of my house?”
This happened twice.
The second incident made him very paranoid. One day, he was heading out to do an errand and was waiting at his usual bus stop. He said he was sitting down and a man approached him asking all kinds of questions… his name, telephone number, home address… I asked if he gave his information to the man and he said: “Of course I did”. I said “Well I hope you didn’t give him your credit card number too, Dad” and he said “No no, he didn’t ask for that. But, he did have a wire in his pants and I know he had a microphone and I am afraid he is going to break into my apartment. So I called the police”.
I went to my brother. I told him we need to get help for dad. He couldn’t be alone anymore. The cleaner could only do so much - and Dad needed more care. He was no longer safe being on his own.
Our social worker from the local clinic had given us a bunch of pamphlets and one of them was for the Alzheimer’s Society of Montreal.
They saved us. I don’t know what we would do without them.
Bruno and I both went to the first appointment at The Society with dad. I am so glad my brother was there because it gave us both a chance to hear directly from the counsellor about the reality of what was happening. I think my brother was still hoping that dad was experiencing normal signs of aging. It was at this meeting, that Bruno and I both realized how much we needed to stick together to make things work as best we could for dad.
The Society helped me with how to talk to my father. How to interact and explain things to him. It helped me enormously. The counsellor suggested that he enroll in the art-therapy workshops. He initially refused, saying he had all the painting materials he needed at home.
I talked to him after and said I’d really like him to try the art-therapy workshop just once to see what it’s all about… And, he said “Okay”! <laughs>
He enrolled in art-therapy on Thursday afternoons, then another activity on Mondays. Honestly, these workshops enhanced his life, and mine. It was marvellous seeing my dad attend regularly and continue flourishing as an artist. He was having fun doing other program activities like zootherapy, aromatherapy, yoga, singing, zumba on chair, etc. So many people would talk about their parents getting sad or aggressive in older age … my dad never did.
I started the 8-week caregiver support group in January 2015.
He continued to give singing lessons and participated in all his own artistic pleasures. I helped him coordinate his singing lessons until he could no longer give them.
We eventually sold the house and rented an apartment for my father in a home for seniors, that has a specific pavilion for people with dementia.
My dad really is a marvelous man. Even when the neurologist explained that he couldn’t drive anymore because it’s not safe for him - he said: “Okay, I won’t drive!”
He was always positive. We spent more moments together than we ever did. But, there were some really tough moments too.
In January, two years ago, I found him on the floor in his apartment. He had pneumonia and influenza. His immune system was weakening. He spent weeks in the hospital. He completely lost his autonomy and had to be relocated in the same residence but in a smaller space on the floor reserved for people with cognitive problems. This space has a kitchenette without a stove or microwave. His room is arranged in the living room, so it was decorated as his living room like it was in his old apartment.
From time to time he’d say “Wow, is it ever nice in here. It’s as if I am in an art gallery!” We would remind him that “of course, your place is nice Dad, it’s all your stuff!” He’d humbly reply “Well, isn’t that true”.
In April 2018, the Alzheimer’s Society of Montreal informed us that he could no longer attend his art-therapy workshops because the disease was too far advanced. There was one class where he stared at a blank sheet for two hours, and the most he did was organize his wax crayons by colour. That’s it. He would ask the art-therapist for help, and not want her to leave his side. But, she couldn’t give one on one attention in a group setting even if she wanted too. He became incontinent. We tried to figure out a way to make it work but it just wasn’t possible.
Whenever he has visits to the hospital, he comes back worse. Bruno and I find it so weird. It is like ‘on’ and ‘off’. Some days he can’t walk, some days he can. Some days he’s tired after a light activity, some days he’s not.
We can’t take him around places as easily as we used too.
But he’s always happy. He still has perfect hearing. He is gifted with a perfect pitch, recognizing all the musical notes as he hears them. He continues to read music and play the piano. When I visit him, he hustles to gather his friends and proudly introduces me as his daughter. He’s just the sweetest.
What I learned… is that we can’t stop doing activities we enjoy as we age. I still participate in the Alzheimer’s Society caregiver workshops every month because I need to share what I am going through with other caregivers even though my dad can no longer attend his own workshops. I do it for me.
We have to take accountability for this. Especially as we age, it’s still our responsibility. We could say eating more vegetables is the key to a long, healthy life, but I think life is more like the lottery. Your chances of drawing a winning ticket are as good as anyone else’s.
My advice to anyone who has a family member suffering from any age-related mental decline is to remember that they need love. Even if they change, lose their memory or become aggressive.
Use music as a tool for therapy, it allows the release of feelings and emotions.
Maybe it’s easy for me because my dad’s still such a happy camper … maybe if he wasn’t I wouldn’t want to visit with him as often.
At this point, I don’t want him to have to move again, and my hopes are that he stays stable.
I’ve shared beautiful moments with my dad. And it makes me proud to say that everyone who knows him says that he’s the biggest sweetheart. He’s in pretty good shape, a complete and total artist with a heart of pure gold.
Philippe Parent is the creator of the La voix au présent and Le coach de chant virtuel: two electronic multimedia books about the history of singing, theory and practice.
The 400-page electronic book La voix au présent is about the history and the theory of singing, which includes the chapter Le coach de chant virtuel (also sold separately).
Le coach de chant virtuel presents 39 singing exercises that include varied rhythms from classical precision to ballad pop, jazz, blues, swing, rock, rigodon, samba, tango, waltz and more. Suitable for amateur and professional singers.
Le coach de chant virtuel http://wizgo.ca/2018/09/coach-de-chant-virtuel-disponible/
-As told by Anne Marie Parent to Cheryl Goss exclusively for Home Care Assistance Montreal; transcript edited and condensed for clarity