Ending at Parkinson’s
This summer I participated in a work program for post-secondary students called Canada Summer Jobs. This is a program developed by the government to assist with developing job opportunities for students. The student must be returning to post-secondary education in order to qualify. I was still unsure whether I would be returning to a master program right away but as I had a few offers, I was eligible for the program. This is an amazing way to gain experience in areas that would not typically have funding within their own budget to hire a student like myself.
I was hired on by Parkinson Society Southwestern Ontario (PSSO) as the Client Support Assistant. Rose who is my supervisor, is the biggest bundle of joy that I ever met. PSSO is the voice of people living with Parkinson’s in this region. The purpose is to ease the burden and find a cure through support services education, advocacy and research. Every day, Rose receives phone calls from those living with Parkinson’s, caregivers and health professionals looking for assistance, information and inquiries. Southwestern Ontario has a large population and there is only 5 full-time staff that works directly in the office. Working here this summer was very difficult at times to see and hear how Parkinson’s affect individuals personally. There is only so much that the PSSO can do with its limited resources but they have a fundamental group of volunteers who come in to assist every day.
This summer, I worked on the Parkinson Education Program which is a resource tool to help health professionals educate those living with Parkinson’s and caregivers. The goal was to update the manual and develop it into an e-learning tool by partnering up with Western University. I was also helping out with creating writing materials for the newsletter and project managing the upcoming Regional Conference and Long-Term Care Challenge for the Walk-It fundraiser. Rose brought me to a Brain Health Network meeting on my first day where I met other organizations that dealt with brain disease/injury/etc. I also got to participate in the fundraisers such as Signatures (a famous event in London that lets you try multiple restaurants for a set price) and barbeques with the other summer student, Megan. We both had a lot of fun – sweating hard in the sun!
My favourite part of the work was chatting with the volunteers. Neil, Gary and Wayne are my favourite three. They meet together at least once a month to eat at a sponsored restaurant from Signatures. They love to chat with Megan and I when we are in the office goofing around. Neil was a teacher during the newsletter chaos, he is in charge of proofreading. He gets so frustrated when people don’t know how to use grammar correctly (which if he read this, I could see him getting his red pen out). Wayne is always working hard, busy focusing on what to do next. Gary is the funny one- he loves to tell me stories about back in the day. I love joking with him and say- Gary, I wasn’t born yet when he mentions the time he retired or when he used to go to Barney’s (a popular local pub that UWO students head to frequently).
Parkinson’s is a growing disease but Canada’s technology is steadily improving to assist with better care in this area. However; there is still much to be done. Caregiver burden is the most impactful stories to hear because you won’t know what the experience is truly like until you are placed in their shoes. Back in Gerontology in Practice- HS 4711A where Professor Aleksandra Zecevic taught, we were placed with an organization that specialized with older adults. I managed to get a placement with McCormick Homes Alzheimer Ault Day Care Program with Karen, who was the head of the program at the time. I remember talking to her about my own experience with my grandparents in Taiwan which as you read in the blog- Taiwan was amazing. What you don’t see is my personal reflection towards the end of my trip where I stayed with my grandparents for a week or two before I left back to Canada. There is a form of dementia, not specifically diagnosed yet but potentially Alzheimer’s with my grandparents. My grandpa on my dad’s side has had a few falls and I would go with him to the doctors. I would wake up in the morning to walk him down the stairs and he would sleep downstairs at times when he felt too weak to leave the house. My grandma was very anxious at the time and she would not sleep unless I was at home with Grandpa. She was afraid to leave the house and I could see firsthand how she was feeling stressed about being a caregiver. She was constantly worried and it made me feel guilty anytime I would leave the house to see my other family members. It was a difficult time but my parents told me that I have to enjoy Taiwan and leave the house. They told me that it was not my role to be the caregiver, but theirs as it was their parents. I love my grandparents but I didn’t know what to do and I started feeling the stress of worrying all the time too. I could only do small stuff in the end like washing dishes, cooking a small meal or talking with them. It wasn’t much but it made a difference to their day. Thankfully, before I left, we had hired a nurse to come in to take care of grandpa. This introduction to assistance slowly eased off Grandma’s mind and now they have a caregiver that lives at the house with them. In the past, Grandma was very determined to not have any outside help but this was something she learned to accept.
Working with AOS (Alzheimer Outreach Services- aka McCormick Homes) with Karen, I witnessed how adult day care programs make a difference to everyday lives of caregivers. The fact that they can drop off their loved ones for a whole day or half a day to go to work, to do errands and have a break makes the biggest difference. These programs are also tremendously beneficial to the user as well. There were different groups with different levels of Alzheimer’s. They had interventions developed for each participant from horticultural therapy to art therapy. A resonated experience was seeing music therapy work in firsthand. The individuals that were waiting for lunch were singing “you are my sunshine”, and some of the participants who had progressive Alzheimers would suddenly be singing along with the lyrics with every word. These interventions help mitigate the symptoms of the client and will ease the individual to their evening activities at home. Even though these are important to assist with the growing clientele, the wait in Ontario to attend the Adult Day Care Program is huge. You literally have to compete for a spot and it is a bit like a heart transplant list where you could be on a list but if the priority of the individual is worse than yours, you will be bumped again. I find this curious to hear because the Canadian government continues to say- we advocate for seniors and older adults every day. However; what is actually happening with the funds? The support? During this course, there was news that the government was going to abolish the Community Care Access Centre as well which is key to assist people to get the care they need in their homes and communities. I don’t mean to ramble on but seriously- this is an issue!
On a complete side note- Karen is the reason I was hired at the PSSO. I had mentioned about the gerontology course and my own experience working with older adults in my interview. Karen is part of the Brain Health Network and so Rose had called her up to ask about me. This is the reason that you should take these type of courses at UWO! It will define your future.
I am going to miss the PSSO. I trekked up a hill every day and rode on my bike for an hour’s commute to the organization. For me though- it was worth it. The experience alone taught me so much about gerontology, older adults and Parkinson’s. The office is a family and they took us in. Joanne would tell us stories about her teenager years, Shelley was always excited as she bought a new house, Steve would try to be cool and learn all our slang, Adriana with her snapchat, Rose with the cheerful smiles and Vicki with her sassiness. They took us out to the Mandarin on our last day and it was just a bunch of laughter and joy. I can’t believe it has been 3 months at the PSSO. Working in non-profit is hard but it is very humble and remarkable work. I hope someday down the line I will be working in a career that deals with older adults because I enjoy this type of work!
Oh- I forgot to mention! Two days ago (literally before my contract ended), I received an offer to participate in the International Youth Internship Program with the Interagency Coalition of AIDs and development in Kingston, Jamaica. I’ll get more to that later but omg- I’m going to Jamaica for 6 months! I am excited for this next step and the PSSO is supportive of my goals!
