“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.
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“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.