Caregivers’ burden can be huge
While it saves public dollars, caring for senior loved ones at home carries psychological issues
By all accounts, Dorothy Housden has an ideal situation for someone living with dementia.
She’s in a bright and spacious first floor suite in a house with her son Bill and his wife Mila Coutinho living above. Dorothy’s bedroom has a high enough ceiling to hold a sleek lift above her hospital bed, which is covered with one of her gorgeous black and patterned hand made quilts.
Although the doorways are a tight squeeze, Bill or Mila can push Dorothy’s wheelchair out to the ground-floor deck in the backyard. If it’s sunny and warm, Dorothy, 86, can sit beneath the grape vines watching for chickadees.
Dorothy’s new digs are a recent change. She used to be upstairs but when her ability to walk deteriorated, the stairs became a barrier.
“I almost went over backwards twice with her, taking her up and down the stairs,” Bill said. “It was obviously too dangerous.”
Bill figured that as Dorothy’s dementia progressed and her mental capacities declined, learning how to operate a stairlift would be too difficult for her. Once a champion quilt maker, Dorothy can still knit, but stopped making her colourful quilts about 18 months ago.
Making the suite comfortable for Dorothy wasn’t cheap. Altogether, it cost about $35,000 to buy the lift, hospital bed and wheelchair and make other changes.
Bill considers it money well spent.
“I always promised Mom that she could die at home in her own bed,” he said. “I’d do anything for my mom. There’s nothing I won’t do for her. She’s the only mom I’ve got.”
As for Dorothy, she loves where she lives.
“I love being with my family more than anything,” she said.
Bill and Mila are part of a huge but relatively unacknowledged part of the health care system in B.C. They’re two of an estimated one million people who care at home for family, friends and neighbours living with dementia and other diseases. In B.C. alone, it is estimated that replacing what they do with paid caregivers would cost up to $3.5 billion a year.
Not all the home caregiving is as extensive as what Bill and Mila provide. Home care can range from relatively simple tasks such as buying groceries for a friend or driving Mom or Dad to a doctor’s appointment to much more time-consuming and intimate help such as bathing or full-time, live-in care.
But while volunteer home care saves the public dollars and cents and keeps people at home and out of the province’s 293 residential care facilities, there’s still a cost to home caregiving, said Isobel Mackenzie, B.C.’s seniors advocate.
The psychological burden of caring for someone with dementia at home can be immense, she said.
Caregivers in Distress: A Growing Problem by the Seniors Advocate showed that the number of caregivers experiencing stress has grown in the past few years by two percentage points to 31 per cent.
Caring for a loved one with dementia increases the risk of caregiver distress by 25 per cent. If you add behaviour problems and psychological challenges to the dementia mix, the risk of caregiver distress rises to 75 per cent, according to the report.
“We don’t like to talk about it but the repetitiveness of living with someone with dementia can be extremely exhausting,” Mackenzie said.
“It’s the psychological burden. Different people handle it differently. Some people are very philosophical about it, some people are very traumatized and some are very angry about it — they’re angry at their loved one for becoming like that. It’s a whole cornucopia of responses.”
Lycia Rodrigues is from Family Caregivers of British Columbia, the province’s go-to association for people caring for loved ones at home.
Rodrigues said many caregivers feel isolated.
“Many caregivers call us because they’re providing care alone,” said Rodrigues, caregiver support and engagement lead. “They don’t have a lot of information in terms of benefits they can have as caregivers or community support close to where they live.”
In many cases, she said, caregivers don’t chose their new role. They fall into it simply because it’s expected that’s what a wife, daughter or other family member will do. But because most family members don’t have the training to nurse someone at home, they aren’t prepared to care for someone with dementia. Of caregivers who used the services in 2017-18 of Family Caregivers, 84 per cent were women.
“One of the challenges we have here is to help caregivers to identify themselves as caregivers,” Rodrigues said.
“They say, ‘Oh I’m a daughter, I’m doing what a daughter is supposed to do.’ They don’t see themselves as caregivers. They can take a long time to ask for support.”
That can mean the stress continues to build until it takes a toll on the caregiver’s health.
“I have caregivers who say: ‘I’m fine, I’m fine.’ But they’re not. At the end they’re the ones who get sick and burn out. We have cases of people having heart attacks and strokes. These are the ones who develop chronic illness after providing care for a long time.”
The main way for home caregivers to get help is by calling the toll-free Caregiver Support Line at 1-877-520-3267.
Trained staff can help caregivers with everything from navigating the health care system and finding a support group in their area to connecting with one-on-one caregiver coaching and being notified of the next caregiving webinar.
A wife, for example, may be in a situation where the care she’s providing for her husband is becoming too much to handle. She could be facing a major life decision about whether to transfer a loved one to residential care. She may be feeling guilt or anger or both.
“Sometimes they say, ‘This is the first time I have someone to talk to about what is happening because nobody understands.’” Rodrigues said.
“When I answer calls, I provide a lot of emotional support.” Additional respite help is on the way for home caregivers. On Monday, the provincial government announced it was going to spend $75 million during the next three years on areas such as providing more respite beds and on expanding adult day programs to include evenings and weekends.
Between 2016 and 2017, the Caregiver Support Line saw a 36 per cent increase in calls from unpaid caregivers. During that time, caregiver situations have grown more complex. Callers now are more likely to be in situations where they’re caring for someone with dementia and diabetes, for example, or Alzheimer’s and depression and Parkinson’s. Caregivers are reporting the added stress of not having enough money to care for the person they love.
“The stress of caregivers who burn out is related to the complexity of the care recipient,” Rodrigues said.
Dorothy Housden fits the profile of someone living with dementia and other health issues. Dorothy, who worked as a registered nurse in the maternity ward of Surrey Memorial Hospital until retiring, has dementia but doctors aren’t sure what type. She may have a bit of Parkinson’s as well as a heart condition known as atrial fibrillation.
During a visit by Postmedia, she was alert, smiling and able to respond to some questions. But her son Bill said that as the day progresses, her behaviour can change dramatically.
By later in the afternoon she can start shaking so violently, she looks like she’s having a seizure. As a way to help, Mila came up with the idea of showing Dorothy videos of babies on YouTube. It calmed her right down.
At a meal, her food has to be cut into small pieces but she eats so quickly, there’s a danger she may choke. She can become very possessive of her pills and say things like: ‘I’m afraid I’m going to be alone at the table all night.’”
Bill, 57, and Mila, 51, reassure her that she’s not going to be alone but, as Bill says, “It’s tough to watch.”
Bill, a former mechanic, is able to care for his mother because he’s disabled himself and retired from work because of a degenerative disc in his back. He and Mila have been sharing caregiving but that’s about to change. Mila has found a full-time job. Soon, he’ll be taking care of his mom by himself.
“I may have to ask for some help,” he said.
Bill doesn’t know exactly where to turn. He has a caseworker with Fraser Health, but so far he hasn’t used subsidized home care because he’s not convinced the amount of help they would receive is worth the $37 an hour they would have to pay.
He said it doesn’t make sense for him to pay a homecare worker to do tasks such as changing the bed when he can do that himself. But he would welcome help with perineal care. When someone is living with dementia and develops incontinence, the perineal area has to washed daily to prevent infection.
As a break from caregiving, the couple have used respite care twice, most recently for five days when Bill was away in Atlanta. They paid the publicly subsidized rate of $37.10 a day; otherwise it would have cost $200 a day. (They can use a maximum 30 respite days a year.)
But Bill sees a problem ahead with Dorothy’s adult day program run by Seniors Come Share Society in Guildford. Every Tuesday, Dorothy is picked up by 9 a.m. and returned by mid-afternoon. While Bill and Mila get a break, Dorothy meets other seniors, does chair exercises, and has lunch. Bill and Mila pay $9.25 a day for the subsidized program, which would otherwise cost $90 a day. They pay the subsidized rate of $5.70 for a return Handy Dart trip (the actual cost is $85.46).
The big service the day program provides is showering Dorothy. Neither Bill nor Mila can wash her properly in their cramped basement bathroom.
You can hear the stress in Bill’s voice when he says: “It’s getting to the point where they can’t handle her. I don’t know how long we’re going to be able to do that.”
Dorothy enjoys the day program so much, Bill would like her to go twice a week. But because there’s such a demand for spaces, one day a week is all that’s available.
“I think there needs to be more funding for it,” he said.
“The interaction is good for her. Sitting and knitting and sitting in front of the TV all day is pretty tough I think.”
One of the challenges we have here is to help caregivers to identify themselves as caregivers.” Lycia Rodrigues