What I learned about advocacy came to late for me. Mom died at home; Dad in LTC.
This is a self-timed photo of me and my friend, Michele. I wrote about her in my book, as she was one of my friends, living across the hall from my Dad's room in LTC. I visited Dad every day, and usually fed him dinner in the last few months.
I decided to put my experience, research and new knowledge to work.
I worked as a Cardiovascular Health Awareness Program coordinator, as well as a Peer Health Educator (CHAP.ca) through The Friends, in Muskoka. I spoke to caregiver support groups, as well as at Adult Day Away Programs, to provide information on blood pressure and other health issues. It kept me off the streets, or navigating them!
I earned my Foundations in Palliative Care certificate in April, 2009, and I am a registered volunteer with Hospice Muskoka.
I continue to assist my friend, Michele, who is in LTC. I wrote about her in my book. She was quite happy to have her story told.
Case Study #4
She is paraplegic and in pain 24/7. I have accompanied her to the hospital and a dental appointment. She must use an ambulance for all transportation needs. She has managed to pass on 5 of my books. She is so very proud that I wrote about her and happy to share her story. Everything we learn as we become advocates, helps one another.
In her LTC home, the powers-that-be told her that she was not able to eat in her room alone. In her previous LTC they refused to bring her lunch (some sort of discipline measure) unless she allowed them to get her up and out of bed, into her reclining wheel chair and take her down to the dining room. It is painful for her to be put in and out of her bed. They must use a sling, or other mechanical device, like the one they used on my Dad. For months, in her new LTC, she has not been allowed to eat alone in her room. The Ministry doesn't like people eating alone, since they could choke, or some such. Her friends would bring her muffins, cookies, crackers and other snacks.
Now, Michele has her faculties. She just doesn't have her muscle control. Her dinners, for a time, consisted of peanut butter sandwiches delivered by busy staff before or after group meal times. It was time consuming. Meal times are difficult, as many residents need to be literally spood fed. Many volunteers are needed, as there are not enough staff to feed all the residents at dinners.
But back to Michele: she was beginning to lose weight, as well as her dignity.
While I cannot speak on her behalf, as I am not family, I did ask a Ministry rep to go in and speak to Michele when next they were checking out the facility. It turns out that her LTC home misunderstood Ministry of Health and LTC directives.
It was a misunderstanding of Ministry directives that did not allow her this dignity.
Finally, after Michele having phoned the Ministry, and speaking to a representative who visited her in her room, she is allowed to have a hot meal in bed, without a painful ride into and out of her reclining wheelchair. It is now her choice, if she is feeling up to it, to have her meal in her bed. No more do I have to bring her a nice salad (which I did on this day), in order for her to have a nicer meal. She feels in control and need not fear lunch times, when they forced her to get up and out of bed. There is a balance between preventing bedsores and respecting her dignity. It is easier for staff to deliver her her tray and leave her to eat her meal and watch the news, than to make a special meal for her.
If you are in LTC, or someone you love, and you have an issue talk to the Ministry of Health and LTC.
Making a complaint about LTC in Ontario.