The story says that Noah summoned creatures two by two. He knew the world could only be remade with the help of couples. In dementia care settings, however, we note the relative absence of men. There are, of course, dedicated men who quietly care for wives and mothers with the disease. But male patients or professional caregivers are vastly outnumbered by women. This makes the contributions of men even more significant.
It takes two
Unfortunately, stress shortens the lives of many men before they reach the age when dementia rates skyrocket. My dad passed away 10 years before my mom ever showed symptoms of the disease. In the various activity programs my mom has attended, male participants are outnumbered by at least 3 to 1.
Men who become caregivers for a loved one have a more difficult time getting assistance outside the family. Most caregiver support groups are dominated by women. Men may be reluctant to share secret griefs in a forum where they are outnumbered. But I have seen some brave guys talk about their struggles to carry out tasks they never dreamed they’d be doing. Father’s Day is a perfect time to thank them and recognize what their contributions mean to the family.
Last month, my boyfriend went with me to my mom’s afternoon activity group. He was treated like a rock star. Although he is tall and strong, I think he would have gotten a hero’s welcome even if he was a pipsqueak. One of the women in the program walked up to him and said, ‘I like, I like.’ It was the first time I ever heard her speak. She couldn’t take her eyes off him.
My sweetheart says he’d be a mess if one of his parents got dementia. He doesn’t think he has the fortitude to care for someone with the disease. But like a lot of men, I think he has a hidden reservoir of emotional strength that would quickly surface if he needed to care for his mom or dad. None of us really expect to find ourselves in the caregiving role. It just happens, and then you try to rise to the occasion. Gratitude is due to the rare and special men who discovered their care was indispensable. Your loved ones can never thank you enough.
Some people take on the role of caregiving when it doesn’t really suit them. I’ve seen staff members in care facilities who don’t understand the needs of people with dementia. In families, we can also be blockheads. Stress makes us gruff or impatient, and that helps no one.
On a recent visit to my mom’s activity program, I watched an aide cleaning up after lunch. She was angry at someone — could have been a staff member or someone with dementia — but it made no difference. Plates were flying into a basin, crashing into each other. Knives and forks clanged as she threw them. Noise like that upsets people who are impaired and sensitive to the slightest emotional rupture. I don’t know what this woman thought she was accomplishing. But the whole show was wrong for a setting where dementia patients were trying to transition from a meal to a group activity. If she had been a bratty teenager, you could banish her to her room. But these were the actions of an employed adult. Could better job training change this?
One of the most exciting elements of the recent New Yorker article, “The Sense of an Ending”, was its explanation of how one care facility revolutionized its approach to staff training. Dementia caregivers were asked to put themselves in the place of their patients. They “spooned food into each other’s mouths and brushed one another’s teeth….to be on the receiving end of activities that they performed for their charges every day.” After these experiences, the education director at the care facility said, “You can feel how threatening it is to have something touch your mouth when you have not brought it to your own lips.”
This comment has lingered with me. Sometimes when I feed my mom, I think something is cool enough for her to eat and believe she’s being difficult if she refuses it. Now I think more about how shocking a warm — or cold — spoon might feel if you can’t see it coming. I’ve also been guilty of trying to get her to eat faster when I’m busy. But she needs extra time to chew and swallow. Since she has no control over the other parts of the dining process, maybe slow eating is the only way she can retain some ownership of her meals.
I’m trying to stop more often and put myself in Mom’s shoes when helping her with intimate tasks. But how do you get poorly paid caregivers with minimal training to show that kind of sensitivity at work? Most of us spend our lives doing unto others what has been done to us. Now and then we are wise enough to add a bit of learned behavior to that basic recipe. But given the numbers of people likely to develop dementia in the coming decades, I think our society needs to require that Adult Day and Residential Care programs hire staff who have (at least) completed a Certified Nursing Assistant program and show sensitivity to the needs of those they help. Better training would improve the quality of care for dementia patients and might give family caregivers who rely on these services more peace of mind.
This week’s report on the shrinking Social Security Trust Fund raises pressing questions for families involved with dementia care. Social security is a life raft for many who live with the disease long after retirement. It’s a resource families need to cover costs like testing, medication, companion care, and, often, nursing homes. How could we navigate without it?
Economists say the Social Security Trust Fund will be solvent until 2033, but that’s only two decades away. Some cases of dementia can last over twenty years. By the year 2030 about 51 million individuals will be 65 and older and statistics show that nearly twenty of every one hundred people who reach age 85 will develop some form of dementia. We are racing toward a perfect storm for bankrupting U.S. families.
Money management always seems more stressful to me than providing care. But I now believe that careful, long-term financial planning is one of the most important actions a family can take. It’s essential to take steps to protect the assets you have and learn as much as you can about the true costs of care. If you are looking after someone with dementia, you should also consider buying yourself a long-term care policy.
My own morbid example illustrates the problem. If I were to get dementia at the same age my mom did, I’d only have 14 good earning years ahead of me. That would bring me to Year 2027. If our political leaders keep failing to make the changes needed for long term solvency of Social Security, I’d get only 6 years of benefits to help me cover costs for a disease that would likely last at least 7 years. Since I’m self-employed, I won’t have a pension. So my retirement contributions should be at least three times as high as my Mom’s were to cover the difference.
Add to this scenario, the vast number of families who did not foresee the long term costs of dementia. Many must spend all of their parents’ assets on care and will inherit nothing. When families can no longer transfer any wealth from one generation to the next, the middle class will shrink even more.
If your day is already filled with the endless tasks of caregiving, I don’t want to compound your weariness. But financial planning deserves your attention. Talk to families who’ve been through this process. They can explain how setting up a trust, transferring property, or buying a long-term care plan could save you from economic disaster. A financial professional who understands dementia care costs can also help. But check every aspect of their recommendations before you commit to buying items like an annuity or a long term care policy. Every financial product is different, and they are NOT all good. To reduce risk, look for advisers endorsed by AARP or the Alzheimer’s Association. Relying on Social Security to be there for the long haul is high risk bet. That will only happen if our elected officials are brave — and I’d never bet on that.