One of the toughest problems, once Alzheimer’s hits, is getting siblings and other family members to help equally with the caregiving – boy, is that tricky.
According to a report out of the University of Berkeley, “40 per cent of caregivers reportedly experience serious conflict with a family member, usually a sibling unwilling to provide the expected amount of help.”
“Dealing with an illness such as dementia is one of those things where the family is either brought closer together or ripped apart,” says Marija Padjen, chief program officer at the Alzheimer Society of Toronto.
“And sometimes the more stress, the more the cracks that are already in the family get heightened.”
How one family got it right
Jim Smith’s Alzheimer’s disease moved fast. Within a year of showing symptoms, Jim’s wife, Mary, and their five children realized he needed to move into a long-term care facility. (Family names have been changed.)
“Some of the first signs we couldn’t deny were when he got lost in a facility he’d been volunteering in for 20 years, or when he couldn’t remember how to make coffee,” says his daughter Sheila.
The family rallied.
Before moving to the residence near his Ottawa home, Jim, 89, required surgery for an unrelated issue, and his in-hospital recovery gave the family time to plan — and practice — new responsibilities.
The family set up a schedule so Jim had a visitor every day. They communicated constantly through e-mail — for example, was Dad having delusions? — and set up a whiteboard to detail who had visited last and what Jim was like (talkative, sleepy?).
Mary managed the couple’s banking; Sheila bought Jim’s clothes and furniture for his new place, while his daughter-in-law, a banker, crunched the financials, and helped to get Jim’s veteran’s pension.
The arrangements, with defined and equitable roles, worked well.
It rarely goes that smoothly. Siblings bicker about when is the right time to put mom or dad in LTC. One or two family members inevitably end up doing the lion’s share (and feeling resentful). The out-of-towners say: “Well, I can’t help because I can’t leave my job.” Those without kids are expected to do more. Everybody’s angry.
Here are strategies for caregiving as a family unit:
Call a meeting as soon as possible
If people are spread across the country, use chat programs such as Skype to get everyone “together.”
“Have open and honest conversations about expectations,” Padjen says.Feeling aggrieved? Don’t hold back. Join the discussion group and let us know: who really got under your skin; who said they would help and didn’t; who left you holding the bag while they went on vacation; who complained that you weren’t doing enough. Click here.
Spell it out if you think all family members should split the workload evenly, or if you think those with no dependents should handle more. “Involve the person with dementia, if possible,” Padjen adds.
Not everyone will want to share in personal care or grooming of a parent. In those cases, find something else to contribute.
Identify strengths and weaknesses
List the responsibilities — such as shuttling the family member to appointments or offering respite to the primary caregiver — and divide them according to each family member’s skills, availability and resources.
Communicators will keep everyone updated; calmer heads should be the point-of-contact for facilities and take on potentially intense conversations with medical teams or social workers.
Eric, Sheila’s husband, tracked Jim’s condition during his hospital stay. “As his condition deteriorated, the doctor requested we keep him informed of our observations, so I took people’s notes and compiled them,” Eric says.
Next, assign a family communicator. “We designated a few key people as the liaison with my mother,” says Jim’s son Joe. “We’re five siblings who are all married, so if 10 adults descended on my mother with information, that could be quite overwhelming for her.”
Out-of-town family can take on tasks such as online banking, or research into care facilities, treatment options, doctors, etc.
It may be necessary for long-distance caregivers to use vacation time to visit their loved one — and offer respite to daily caregivers.
“One of our brothers isn’t in town and it’s not easy because he feels a bit guilty for not being here,” Sheila says.
“But he travels for work and he tries to get here as often as he can. He also talks to my mother on the phone two to three times a week and he’s very close to the youngest of our Ottawa-based family, so he touches base with him often, too. And of course he stays in touch on all the e-mails.”
A reality check
While everyone may agree to help, Sheila suggests preparing for the fact that not everyone will follow through. “At those times, you just have to say here are the people who are going to work on it, and that’s it.”
Astrid Van Den Broek is a freelance writer based in Toronto, Ontario.