“I found out later that the Community Care Access office is in the same building as my doctor’s office in South Eastern Ontario. When I look back at this time, I find it so odd that not one of these people in the medical community referred me to Community Care Access. I will always wonder if we could have set up support for her (and us) as soon as she arrived, if the ugliness of the months to come could have been avoided.”
Sharon Osvald looks back and the last summer that she spent with her mother, Phyllis Rennick, before everything started to change.
“That August she came to stay with us for almost a month’s vacation.”
They even started talking about the possibility that her mother might move into a granny suite at their house.
“All in all, it was a great holiday, complete with trips to the lake, antique shopping and pleasant conversation. Looking back I see some subtle changes were happening at that visit – but at the time we attributed these things to normal signs of aging.”
For some people, dementia may come on very gradually. For Phyllis, the symptoms came quickly, throwing her and her family into a tailspin. As Sharon tried to keep up with the changes, and to fit into the all-consuming role of a care partner, she was met with closed doors and lack of clarity from the health care system at almost every turn.
“Phyllis Rennick is one of the forgotten people whose life kept going long after her brain stopped working right. We grieve her loss even while she is still with us.”
It became apparent that her mother could no longer live alone. Phyllis felt paranoid and made abrupt decisions, even listing her house with a real estate agent. Despite her family’s efforts to have her reconsider, Phyllis was resolved to sell her house. The house sold quickly and that heralded a wave of inexplicably manic behaviours.
Sharon and her family braced themselves while they prepared a space for her mother to live. Phyllis was placed on sleeping pills and medication for depression, which only seemed to make the problems worse. Here, Sharon made her first contact with the health care system on behalf of her mother. It would be the start of a roller-coaster with frequent disappointments.
Eventually, she was able to find a doctor who would accept her mother as a patient through a family friend. The care offered didn’t correlate with the care needed.
“I found out later that the Community Care Access office is in the same building as my doctor’s office in South Eastern Ontario. When I look back at this time, I find it so odd that not one of these people in the medical community referred me to Community Care Access.”
Support Sharon and her family.
Contact your MPP and ask them to support a fully-funded dementia plan in this year’s provincial budget.
“I will always wonder if we could have set up support for her (and us) as soon as she arrived, if the ugliness of the months to come could have been avoided.”
It was a week before Christmas when Phyllis moved in, and her state shocked Sharon.
“It was clear that she was in a psychotic state, wildly paranoid, terrified of everything, mixing up her nights and days and talking about death. She refused to let us turn on the gas fireplace petrified the house would burn down and wept out of control after I helped her have a bath – convinced she was drowning and that the whole house would flood.”
These behaviours led Sharon to go to the hospital, where they were met with rigid care and no options for further support. Sharon drove her mother to the next hospital where there was a bed available. At her wits end, and scared for her mother, it was the kindness of the nurses and doctor that she remembers.
“I was met with some of the greatest kindness I have ever known. Nurses wrapped their arms around my mom, offered her some tea and toast and took her in like an old friend. The doctor sat on the side of the bed. He turned to her and said “You look tired,” and then facing me said, “and you look scared”.”
The hospital insisted on putting Phyllis into a secure Alzheimer’s nursing home bed that night. But this had all unfurled within only days, and Sharon was trying to get her footing before making any decisions. Sharon felt pressured to make a decision that night, but walked away if only to first find more information about what was happening with her mother and to speak with her family.
In the days that followed, things went from bad to worse. Grief, guilt, and the pressure to make a wise decision on her mother’s behalf were wearing on Sharon.
“This was such a stressful time. I decided to take a month’s leave of absence from my job.”
The first nursing home to which Phyllis was admitted declared her unsafe, and she moved out six days later. This marked the beginning of a number of fast changes, closed doors, and increased agitation on the part of Sharon’s mother. There was no question that the circumstances were aggravating Phyllis’ condition, and while at the local hospital the staff asked Sharon permission to restrain her mother.
“She spent the next few months tied to a chair or her bed, loaded up on anti psychotics and too much adavan, begging us to free her. How on earth had we fallen so far from those short months?”
Without support or structured care, Sharon continued to feel the strain as her mother’s primary care partner.
“I was beginning to feel depressed and exhausted and was nearing the end of my leave of absence from work.” Overwhelmed, Sharon decided to resign from work. They let her stay on part-time until the end of June.
“This change is not something we exactly budgeted for.”
Months later, there was a glimmer of hope. A room had opened up in a nursing home where Phyllis could start this new phase of her life on solid ground. The stability of her living situation and the kindness of the care staff started to have a positive impact on her.
“It felt like we’d been thrown a life line,” remembers Sharon.
For Phyllis, there are still good days and bad days, though she finally has consistent care. Sharon is finally able to confront the grief and turbulence of this heartbreaking journey.
“The hardest thing now, besides the constant dread of her getting worse, is how lonely it is. As Mom slowly fades into a smaller version of herself, visitors drop off. I am constantly adjusting to a shrinking relationship while trying to keep attached to that Mom I know – and trying to keep everyone else attached to her too.”
“Maybe if I can help someone it will make what we endured a little more worthwhile. I am so thrilled that her story is not lost, that people still care what happens to Phyllis Rennick – the woman – the wife- the mother – not the crazy old lady – that my mother is not forgotten. I hope that what is learned here today will make it easier for many people like her – that their journey will be better.”
Sharon Osvald now facilitates advisory conversations online with older adults and their family/care partners living with dementia and similar diagnoses at www.dementiacrossroads.ca and encourages others to share their stories through the Behavioural Supports Ontario Provincial Lived Experience Advisory Network.
Sharon – thank you so much for sharing this story. Your Mom was my Grade 1 teacher at Monkton Public School many years ago. I recently reconnect with a friend from Grade 1 and we reminisced how when I came home from South Africa I arranged a get together at my mom’s place with four of my friends from Primary School and we invited your Mom.. I will always fondly remember that visit.. We also had the pleasure of being invited to your Mom’s for dinner on one of our trips home from South Africa, as well as visiting the Church your Dad pastored.. I can relate to some of what you are saying as my mother-in-law came from South Africa to Canada to live with us during her very early stages of Alzheimer’s (at that time we also thought it was normal stages of aging.) For two years we tried to cut through the red tape to allow her to stay in Canada. With no success, the only option left was to take her back to Africa and get her settled in a Care facility in Cape Town. Your Mom was a wonderful lady. Alzheimer’s is horrible illness often called the long goodbye. I send my prayer support and love to you and your family, and am so glad you shared your story.
Hello Marjorie, Sorry I didn’t see this post until now. I remember my parents speaking of you fondly! How nice of you to take the time to send a message. Blessings to you and your family. 🙂
The visiting CAA Niagara social worker let me know that my wonderful husband would soon need more care than I could provide. I did not believe her, but let our names go on the list for possible bed openings in our area, which might be three years. We started to look at the nursing homes on the list which was provided, thinking that we would be proactive. However; within four months another health problem arose for my husband and that made my blood pressure rise dangerously.
I realized my husband needed more care than I could provide and he needed a temporary bed.
I am so glad that the CAA worker could anticipate what I was denying. All has worked out well for us, but as a retired case manager I knew how to communicate and state our needs. I feel sorry for the caregivers who lack the knowledge and motivation that I have. There are many caregivers who die before their loved one and that leaves a crisis situation.
Thank you for sharing. It is scarey what lies ahead for my husband.
our family journey is so similar to yours Sharon, we need to get involved through discussions with medical community, local organizations and businesses, getting involved and talking very loudly to government agencies to continue fight for every single Canadian !!
It’s 5:40am. I’ve awoken with my petite adorable mother beside me. She’s 66 and lives FT in long term care. When her ability to ambulate, and social side comes out combined with my work schedules she comes over for sleepovers. We either go out for dinner or she laughs at my spartan kitchen skills.
I’m an only child work FT and have been thrown on the most challenging neurologically arduous journey I’ve encountered in life thus far.
Mom’s been diagnosed with advanced early onset dementia. She went from living in her home to awaiting a bed in the hospital for over a year in LTC.
Shortly after mom turned 64, I knew something was atypical with her behaviour. Our whole family suffered as mom couldn’t get into seeing the only PsychoGeriatric specialist in town. I tried everything with my father to get her an appointment- but they couldn’t see her until she was 65. We had to wait while she eroded. It was horrific.
My vocational background is in Gerontology, with a speciality in Dementia Care. My credentials and time spent in the field is extensive.
I moved back to Northwestern Ontario from Toronto a few years before this occurred to pursue further education and live with my Paternal Grandmother who was reaching a time where all felt uncomfortable with her living alone. Her Dementia had advanced, so we became roommates. I knew in my ♡ no one could offer the love support in the community that I could. She taught me how to love and I love (ed) that woman back hard!
My maternal Grandmother was also showing signs of “advanced aging” and the symptoms were all too familiar.
Again with my vocational background I did the best I could.
Doing the best I could for the three maitarchs in my family with my love and expertise eventually equalled me running myself into the ground.
I had written published university papers on caregivers, and how to take care of yourself while caring for others with Dementia. I was an activity director at a nursing home for eight years, I have many certificates from the Alzheimer’s Society, Montessori training for Dementia from McMaster.
The left side of my brain told me that I could do this. I could help the women of my family. I could give back. I could navigate the “system”.
Boy was I schooled. To sum it up I successfully ran my health, energy and soul into the ground. I did the opposite of all that I preached. The resources were not there and the volume of individuals on the lists above my loved ones were extensive.
The few years that have passed eventually led way to somewhat of a ‘doable’ work life balance. I override my guilt and enjoy the awesome times I have with my mom.
This journey is nowhere over yet. I know there are brighter days and stormy days awaiting us in the future, however we do our best to live in the present.
We cannot suffer in silence and erode on our own. Communities, family and friends need to be connected during their times of isolation and connect. I’m grateful that there is a Strategy from the Ontario Government looking ahead. One cannot be in the present, plan for the future and enjoy the moment.
This is just the beginning. There is so much more that needs to be said and done, especially for those who cannot or do not have the voices or abilities to self advocate.
I’m grateful that I can reach out, share sadness and compassion for others and their emotional journies. There is volume and voices in numbers. And this woman has no qualms about speaking my mind now that it’s been recharged.
I’m a gentle soul. However when it comes to Dementia and the erosion it causes to everyone, I’m ready to armour up and face the battle.
I’m a peaceful woman, but I come from amazingly strong women. I fully intend to become a louder voice who cannot speak for themselves.
Whew! That was cathartic venting and empowering. This is just the beginning…♡
I feel for you..I have a sister who after her husband died seemed to be in a constant for of grieving and couldnt let go. Everyone thought for a long time it was because her husband of 65 years was gone that she was acting so different. She also sold her house quickly even though she was advised against it. After that it seemed with each passing day she was becoming worst. Her daughters took her to see doctors and finally were told she had dementia. Thank goodness they found her a beautiful seniors home .The staff there are wonderful with fantastic meals. She at first seemed to be coming around a bit but now she tells everyone someone is stealing her possessions and changing things in her room. Those things always become found when they are looked for but she still insists its some lady we dont see orknow..Its sad because her temper was always great and she was always cheerful. Now she says and does things she would normally not do..I live a 2 hour drive from her and have been ill myself so i dont get to see this stuff her daughter tells me..Lately when my sister calls me she has talked about this person who takes her belongings and moves things around..There is no such person but to her that person is real. It breaks her daughters hearts to see the loving compassionate mother they use to have compared to now..Yes dementia is what she has been diagnosed with and it is heartbreaking to see how that person you love so much is losing herself..God bless you all ….
My heart goes out to you ! Our family has gone through such a roller coaster of emotions these last months. My husband was diagnosed with Lewy Body Dementia, little know even by the medical community. It is the speed at which this horrible dementia has developed that shocked me and our children,(his and mine)!We were so fortunate that my beloved husband was seen by a wonderful young neurologist who connected all the dots for us. It was a devastating diagnosis but now we have a label. LBD is the second most prevalent of the dementias after Alzheimers.
We were so fortunate that LHIN(local health integrated network) worker came to assess our situation. We were told that all the care facilities had a 2-3 yr wait which by then would be too late . However a friend told me to have my husband put on the ‘crisis list’ This was never mentioned at the initial meeting,that I found very odd and wondered why. So my stepson called and we were able to get his Dad on the crisis list, choosing 5 residences and also having seen most of them. We were again fortunate that the one residence where my husband has been for 2 months now in the Long Term care wing is excellent. It has a well deserved excellent reputation. It is only a 10 minute drive for me, door to door. I still find it so hard to leave him. I visit with him 4 days during the week and one day on the week-end.
My advice to any one who must care for someone with any form of dementia is to get outside care as soon as possible. Despite help from our sons I was going under as the carer having been sleep deprived for several years.
There is also something called Ambiguous Loss(you can Google it.) which all families go through. It is very different from the grief one experiences after the death of a Loved One.
My other piece of advice is to make sure you have BOTH Powers of Attorney in Place ,medical and financial. We , my husband and I had those in place several years ago and that was invaluable to me.
There is also something one can access via the governments called Involuntary Separation, look that one up too.
The best strategy for any caregiver is to Education oneself about the help available in one’s communitye.g. local Alzheimer Society , not to be discouraged by officiousness, get all your papers in order, wills especially and those Powers of Attorney. The PofA are different in each province. Your lawyer will be of great help to you.
And keep your network of friends as you will find them a good outlet just to listen .
As difficult as this may be Please keep your own outlets/activities in place. I know that is hard as I went turtle for a while but I am slowly resuming my outside activities as I have the energy. Keep your physical fitness up e.g. walk, swim . Last , NEVER APOLOGIZE!! You and family are going through horrific times. Courage , resilience and sleep help so much.
All the best to you!