Daughter copes at home with two ailing parents

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Ted Bosak was an architect, a father, and a proud, independent man.

At the age of 86, Bosak was living in a Stouffville retirement community bungalow, taking care of his wife Nadia, who suffered from dementia.

Mentally, he was sharp, still in possession of his precise architect’s mind but physically, Bosak was growing frail. His daughter, Susan, liked to say that between her two parents, there was one healthy person.

On May 18, 2009, Bosak awoke early in the morning, as he always did, walked to the kitchen and made himself breakfast. At some point, while his wife slept, Bosak had a severe stroke and fell to the floor.

The incident launched the Bosak family on a journey familiar to many Ontario families. The Star’s ongoing Begging for Care series is looking at how the province is dividing up $1.1 billion in Aging at Home money. Many seniors are getting very little or no home care because the province is focusing its efforts on both the very sick and on discharging seniors who have been occupying expensive hospital beds for weeks or months because they have nowhere else to go.

Susan was in Cincinnati the morning her father had the stroke. She was talking to a class of grade five students about the value and meaning of aging, part of the work she does through her foundation, the Legacy Project.

When her cell phone rang, Susan told her frantic mother to press the panic button in the kitchen and by the time she drove ten hours home, her father was in Markham Stouffville Hospital, where doctors did not expect him to survive.

But he did. It became clear to Susan that while her father was paralyzed down the right side of his body and struggled to speak, he could still understand when she explained what had happened.

The physical impact was severe. He had problems swallowing, could only eat thickened liquids with a teaspoon, so each meal took an hour.

We are talking about a man who was proudly independent, a child of the depression, and he was incontinent and with his colitis had to be diapered frequently. It was very hard on him,” Susan said.

After two weeks in hospital, Susan said staff told the family they needed the hospital bed, so he would be discharged and sent home. His colitis flared and Bosak spent several more weeks in the hospital, as Susan tried to decide where he should live.

She said there was a long waiting list for nursing homes and no beds were offered. From the work that she has done on aging, Susan said a nursing home experience would “break whatever spirit he had left.

Bosak said hospital staff told her the Central Community Care Access Centre (CCAC) had a program for high needs seniors that would give 21 hours of personal support care each week, along with regular physiotherapy, speech therapy and nutritional counseling.

We figured that might be enough to make this work, if we were creative and had three family members to help,” Bosak said.

Her father’s new condition was complicated by her mother’s dementia. Theodore had been his wife’s caregiver, living independently in a Stouffville retirement community. Now they both needed help. As two high needs seniors, she was sure they would each receive 21 hours of care.

After making the “hardest decision of my life,” Bosak and her husband decided to renovate their home, located just outside Stouffville, and move her parents into two adjacent rooms. Without her father helping, Susan’s mother, Nadia, 79, was deteriorating quickly.

By late July, her parents moved in. Susan said that is when she discovered the hospital’s promises of home care were not going to be accepted as easily by the CCAC.

Once we got into the community, the story changed. The CCAC said they would need more assessment, maybe they wouldn’t qualify, which just blew my mind because how much more high need do you need to be?

Susan said the CCAC later decided her father qualified, but her mother, with her serious dementia, didn’t fit the program profile, and received fewer hours.

We were begging,” Bosak said.

Bosak and her husband were shocked to discover the weekly physiotherapy sessions the hospital described were not forthcoming.

They were like, okay, we’ll give you six sessions, use them well.

The physiotherapist sent by the CCAC was rushed, and, Bosak said, not skilled in communicating with a stroke victim. He father ended up being terrified of the encounters.

She hired a private physiotherapist who came twice a week at the cost of $120 per session. Her husband trained alongside and did therapy with his father-in-law every morning.

They had the same problems with a CCAC speech therapist and ended up hiring a private one at $120 for an hour session, twice a week.

It was like night and day when we brought in our own physiotherapist. My Dad regained some functioning in his right hand. It gave him hope. The whole idea was to give him as much independence as possible.

Bosak said a CCAC case manager came in every three months to reassess the hours they could receive.

On one visit, she recalls talking about her Dad’s problems; he can’t move, can’t swallow, he’s suffering from colitis, which is several diaper changes a day and watched as the manager typed answers regarding his condition into a computer program and pushed a button.

She says, ‘Oh! Your father actually scored better this time than last time. That means we’ll have to cut back his hours.

I said, ‘How is that possible?’ She said, ‘Well, the computer program registered that he didn’t get any worse.

Bosak said she begged at every visit, to keep her Dad’s hours at 21 a week.

I remember sitting and crying at one point. It was humiliating. It was a terrible financial burden. We simply don’t have any more money. We were going to burn out.

Bosak’s father died a year after he moved in with his daughter and her husband. Her mother still lives at home with them.

The Central CCAC said it could not discuss individual cases but a spokesperson said it tries to give “outstanding care” to all of its clients.

Bosak said the system put incredible pressure on the case managers to cut hours.

I feel lied to by the system. If this isn’t a priority, then say so. But don’t say our priority is ‘Aging at Home’ and then tell me that even though the government has announced this new program, there is no funding to implement it.

It is a mirage of a program.

Tomorrow: 82-year-old woman told by hospital: Pay $1,800 a day or get out.