Consider the twin cruelties of having a loved one with Alzheimer’s disease: On the one hand, caring for him or her is non-stop responsibility, stress and expense. On the other, you have to watch the person you love slip away, or even worse, become a disoriented or even hostile stranger.
Seattle journalist Collin Tong experienced the long ordeal starting when his beloved wife Linda was diagnosed with the early-onset variety at age 51. Tong has edited a book, composed of stories from 23 caregivers, called “Into the Storm: Journeys with Alzheimer’s.” And he shared with us a handful of the practical things he wishes he’d known before caring for someone with Alzheimer’s.
1. Care For Yourself
Caregivers have much higher incidence of depressionand psychiatric symptoms than the general population, and are at increased risk of high blood pressureand other health problems.
Tong says it’s absolutely crucial for caregivers to carve out time to take care of themselves, and enlist help to do it. This can be tricky because not only are there seemingly no hours left in the day, but caregivers may feel guilty about “neglecting” the inexhaustible needs of their loved-one in order to focus on themselves, the “healthy” ones. But Tong says you have to overcome that.
“After a year, I think I was really floundering. I felt like I was treading water,” Tong said. “If you don’t reach out and engage the support of your friends and your community, you could die before the person you’re caring for. And that happens.”
2. Get Long-Term Care Insurance
Tong says both he and Linda had medical insurance, which is, of course, a good start. But that coverage doesn’t begin to pay for all the extra services required to care for someone with Alzheimer’s.
“I did a calculation. I was really just staggered by the amount of money that I spent,” Tong said. He figured between the adult family home, adult day services and other expenses, he spent an average of $70,000 a year for four years out of his own pocket.
Tong says he’s seen friends burn through their pensions, life savings, even children’s college funds to pay for Alzheimer’s care. And some couples have been forced to get “Medicaid divorces” in order to protect their assets and get their spouse eligible for government help.
“Thank God I never got to that point,” said Tong.
Long-term care insurancecan help protect against financial devastation.
3. There Is Support For Caregivers, 24-7
Tong says he compiled “Into the Storm” as a sort of virtual support group. That’s largely because support groups, especially from the Alzheimer’s Association, were so crucial to Tong maintaining his sanity.
It didn’t start out that way; Tong says he stopped attending meetings after about three months, feeling he was too depressed to connect with the other caregivers, who seemed to be so organized. A friend later explained to him that really, everyone there was depressed, too, just coping differently.
Tong went back and came to think of his groupmates as extended family. Furthermore, the association has a 24-hour hotlinethat connects people with resources, information and plenty of compassion.
4. Get Your Act Together, Legally
Power of attorney, living will, DNR: these terms all probably ring a bell for most of us, but we often don’t get them sorted outearly enough. Tong says it’s crucial to get these things organized before the patient declines too much, and before the caregiver is completely overwhelmed with responsibilities.
“I can’t stress this enough,” Tong said. “Get your legal affairs in place.”
He suggested consulting an estate planning attorney to get the details right, because when the time comes, you won’t want to be sweating the details.
5. Be Prepared To Be Unprepared
“Into the Storm” includes an essay by noted health care expert, Kathleen O’Connor. She recounts a joke (the NSFW version is here) in which an aspiring actor gets a one-line part in a play: A canon sounds offstage, and he’s to say, “Hark, the cannon!”
He rehearses over and over, as stagehands bang pans together offstage and he cries, “Hark, the cannon!” By opening night, he’s thoroughly prepared. The moment comes, a real cannon fires its blank, and the actor recites: “What the hell was that?!”
“Which is exactly how I felt when I became my mother’s caregiver,” O’Connor wrote. It’s an idea Tong seconds: No matter how prepared you are, the shock of taking responsibility for someone with Alzheimer’s makes you forget your lines.
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Tong and several of his contributors will read from the book Sunday March 16 at The Elliot Bay Book Companyin Seattle.
