Advice for 'carers' of people with Alzheimer's
By Katie Scarvey
It’s not any one thing; it’s “the constant pitter patter of little defeats.”
If you’ve ever been a caregiver, you probably understand what Lisa Gwyther means — the day-to-day challenges of caring for someone with Alzheimer’s disease add up over time and can eventually threaten to overwhelm.
Gwyther, who is the director of the Duke Family Alzheimer’s Support Program, spoke recently at the Trinity Oaks retirement community about coping mechanisms for caregivers during a seminar sponsored by Lutheran Services for the Aging and the Family Caregiver Support Program in Rowan County. Gwyther is associate professor in the Department of Psychiatry and Behavioral Sciences and has almost 40 years of experience in aging and Alzheimer’s services.
People don’t typically plan to be caregivers for a parent or a spouse, Gwyther said, but end up being “the one” because they do care and are compelled to do the best they can because they can’t imagine doing otherwise.
Caregivers face many frustrations and find themselves feeling overwhelmed, exhausted, depressed and out of control of their own lives.
Having the responsibility for someone with Alzheimer’s or dementia is demanding and requires a lot of organizing, adapting and problem-solving, Gwyther said.
The carer (a term Gwyther prefers to “caregiver”) often must deal with feelings of resentment, disappointed expectations and uncertainties.
Gwyther urged carers to understand that there are no perfect solutions and no superwomen or supermen.
One way to cope is to change your perspective — or “reframe” to focus on what is present rather than what is missing. A carer might, Gwyther said, miss out on having meaningful conversations with her partner, but can focus on what they can still enjoy together — even if it’s simply listening to the rain on the skylight or enjoying him stroking her hair and telling her she’s beautiful.
Finding humor in things and nurturing an attitude of acceptance will help carers get through their days.
Carers should seek “good enough for now” solutions and realize they can’t do everything themselves.
Gwyther also talked about family dynamics that can make things difficult — an observation that prompted head nodding around the room.
“Every family has a judge,” she said, someone who thinks that the situation would be improved if he or she were in charge. “Long-distance know-it-alls,” she said, are family members who swoop in and give advice based on limited information and brief observations.
Caregivers need to accept negative feelings and forgive themselves when things go awry.
“Work on quality of time together,” she said. “Establish time and energy priorities. Set limits, say no, and mean it.
“Act from love or commitment.”
Resist second guessing, she also advised. You can only do what seems best at the time.
Vent when you need to, by journaling or talking to friends.
Gwyther also spoke of the importance of “filling your basket,” she said, or recharging your batteries.
“Find your why, something that reminds you of why you’re doing this.
“Find an attainable daily hope. That you’re going to get a smile out of your loved one. That you’ll watch the ducks, that you’ll hold hands.”
Connect hope with a small daily action plan — to ensure that what you hope will happen will happen.
Have a mantra to help you get through, something along the lines of “This too shall pass.”
Joining a support group can be helpful, she says, by giving people relevant “survivor models.”
Work toward a more equitable sharing of responsibilities with other family members, although realize that things are not going to ever be “equal.”
Practice tolerance with yourself.
Think twice before giving up things.
Don’t underestimate the power of the telephone, she said. “It can make a huge difference” to call friends and family members and connect.
If you’re feeling empty, find an antidote, she said: relaxation techniques, tai chi, meditation, prayer, yoga or mindfulness training can all be beneficial.
Realize that church communities can help.
Gwyther noted that people with chronic illnesses “often take out their frustration on close family members.”
Remind yourself that the care receiver is not unhappy or upset because of what you’ve done but is “living with unwanted dependency,” Gwyther said.
She shared some advice for carers:
Avoid promises, statements that include always, never or forever.
Find ways to give and help each other to feel purposeful, appreciated and loved.
Take time to celebrate small victories when things go well.
After Gwyther spoke, she called upon several caregivers from Rowan County: Bill Jacobs and his partner Brenda Butler, who have been caring for Bill’s parents, starting about three years ago with his mother, whose condition escalated quickly after a surgery. This past year, his father has also needed care.
Bill is happy to be able to give back to his parents, who, he said, loved him during his troubled times.
“I was the problem child,” he admitted.
The oldest of three boys, Bill talked about the challenges of getting his father to go to Abundant Living’s adult day care program — and how well that has worked out.
While care for his father during the day helps free him up to work, he spends five nights a week at his parents’ house. His brother from Virginia helps on some weekends, and another brother helps navigate the VA.
Bill’s partner, Brenda, also assists with the care of Bill’s mother, particularly with her dressing and hair routines in the morning. She’s learned by doing what works, and one thing she’s learned is that a predictable routine is important.
Bill and Brenda make time for themselves and their own relationship. “We meet for breakfast and go out on the weekend. We try not to talk about our parents,” Brenda said — although they do allow themselves to vent from time to time.
“To be able to talk to each other about it ... it helps us to ‘get it out.’ I do get overwhelmed.”
Because of Bill’s job, Brenda picks up his parents from day care and takes them home and cooks supper each weekday. Bill gets home later.
One day, the frustrations had built up and she was “almost in tears,” she said.
“He just hugged me and thanked me and said, ‘It’s gonna be OK.’ We just communicate.”
Kaye Hirst, who has a parent with dementia, said the seminar gave her insight into how other people are dealing with parents or spouses who have some form of dementia or Alzheimer’s.
Hirst said that simply realizing others are going through this can be helpful.
“We laughed and we cried that day, and believe me, when you see someone you dearly love with all of your might losing their memory ... you must look for the good memories of who they once were, not who they have become and what you and your family are having to deal with, and love them all the same and just as fiercely, and defend them and help them, and laugh when you can, often among the tears.
“Yes, we mourn and grieve for their loss of memory, of who they once were and of who they have become, but as caregivers, we have to remember and savor the good times — and there are still good times on good days. And continue to pray for and give them as many good times as possible. And ... don’t be afraid to ask for help!”