It’s been a while since I’ve updated the blog. A lot has happened, and I’ll get to all of it in future posts, but this CBS News story really strikes a nerve, and I can’t go to sleep without writing about it.
Quick update: Near the end of January Bill slipped or tripped and hit his head on the vent hood over the kitchen stove. While he never lost consciousness, he suffered a subdural hematoma, spent two days under observation in the ICU at Denton Regional, and suffice it to say maxed out his annual deductible and yearly out-of-pocket expenses by January 28. (An ER visit including ambulance ride, 3 CT scans and an MRI and two days in ICU will do that to you.) That saga isn’t over, but this blog post isn’t about that.
People constantly tell us caregivers how heroic we are, or how they “don’t know how [we] do it.”
We don’t know how we do it, either, and no, we’re not heroic. Heroes do what they don’t have to do. They do it out of courage and often without thought–they act on impulse. We caregivers do what we do because we have to—because nobody else will and most of us don’t have the money to pay for all we need. (And those who can pay still have to deal with the pain of seeing their loved one slip away a bit every day.)
I’ll boldly say you don’t know how we do it–because you are relieved YOU don’t HAVE to do it.
Every 66 seconds somebody in the United States is diagnosed with Alzheimer’s Disease. Throw in the many other types of dementias, and we’re dealing with an epidemic. I’d wager in a couple of years 100% of the population will either have some form of dementia or will have a family member with it. The Alzheimer’s Association just released a new study with some shocking figures.
There’s nothing heroic about being an unpaid caregiver to an Alzheimer’s patient. We’re isolated because our friends don’t ask us out any more or come over to visit; family members desert us, we’re tired all the time, scared most of the time, and angry much of the time. Those of us who still have jobs, at least have a little outside contact, but that spouse who is full time caregiver in the home probably finds the UPS guy delivering another crate of incontinence supplies the most enlightening conversation he/she has had all day.
And a lot of us are broke.
Hubby is getting to the point I can’t leave him alone as much as I used to. Oh, sure, he can heat up food in the microwave, make a salad, soup or sandwich, brew coffee in the Keurig, and do toileting, etc., independently, but he has no mental or physical stimulation. The video monitoring system I have in the main rooms of the house prove he sleeps way too much when he’s alone, or just watches TV. He’s bored, and since initiative is often one of the first things to go, he rarely engages in productive activity without prompting. That only adds to the rapidity of his cognitive decline. Years of asking people in his men’s group or other groups to schedule some time to come visit, play Monopoly with him, engage in activities at the Senior Center, go to the animal shelter and walk dogs, do ANYTHING, have fallen on deaf ears. So now I’m looking into paid caregivers, and I don’t like what I see.
Most caregiver assistance agencies in our area charge $17–$20 an hour with a 4-hour minimum and a regular schedule set in advance. That doesn’t work for an academic schedule, which can be erratic and hectic. A “quick trip” to the office often becomes a 4 hour ordeal because I must have a microchip implanted somewhere in my body that sends out a signal when I’m on campus and near my office. Needy students and needy colleagues all get a slice of my time when I’m in the building. Don’t get me wrong, I enjoy them all, but when I’m distracted by the urge to get home, not so much. And forget getting a caregiver on short notice. You think getting a baby sitter is hard? Try getting a caregiver from an agency after hours or on weekends without lots of advance scheduling.
A friend at church who volunteers for a hospice bereavement ministry identified a recent widower with the same interests as Bill’s, and this gentleman is coming over one or two nights a week when I teach an evening class. I make sure both guys are fed, either by throwing something into the crockpot or shoving a casserole into the oven, or ordering a pizza. I assume they have some meaningful conversation. It’s better than nothing, and Bill feels useful because he feels like he’s helping his new friend, as he says, “be less sad.”
I’m considering a paid caregiver one or two days a week–someone with Bill’s interests and ideas for enrichment activities that can slow Bill’s cognitive decline. But those aren’t cheap, and I’m still paying down debt run up during the years (pre-diagnosis) when Bill couldn’t hold a job and we lived off credit cards because I was working part-time. Bill has never been particularly forthcoming about our finances, and I was content with that. His parents were good with investments–mine had a checking account and a savings account. Little did I know disease was messing with his brain long ago, and that messed with our finances. I expect my retirement home (assuming I outlive Bill) will be a park bench somewhere.
Our house, with a great floor plan, gorgeous yard and pool in a wonderful neighborhood, is paid for–we inherited it from his parents, who did little more than change light bulbs for 40 years, so there’s the 1969 wallpaper and shag carpet to deal with, among other things. Theoretically, all I have are utilities, property taxes and maintenance. Still, it really hurt when a service organization–one that has helped us out with manual labor in the past, and that my husband is a dues-paying member of–responded to a recent request to schedule a project they volunteered for last year with “…consensus is you need to downsize and move to a place easier to maintain. In the meantime you’ll just have to find someone to do that work or pay somebody to do it.”
Easy enough for you to say. Are you offering to help with that downsizing sale (at which I’m lucky to get 50% of the proceeds if I hire a contractor), property cleanup and move us to a place where I’ll have a mortgage payment or rent? Then, are you willing to help with the inevitable confusion and wandering that comes with moving an Alzheimer’s patient away from his longtime home? No, you’re just giving advice to a drowning person.
Alzheimer’s does that to people who don’t live with an Alzheimer’s patient every day. Fear of the unknown takes over. It makes them uncomfortable when the person loses executive function, suffers memory loss, or starts to confabulate a story. They’re embarrassed by minor behavior aberrations.
So that discomfort leads friends and family to distance themselves, because it’s easier for them to just walk away.
But it’s not easier for the caregiver, who has no break from the routine and the drudgery. No adult conversations at dinner. No stimulation. Never a moment alone at home.
And when that stranger in a familiar body is your spouse, your soulmate, with whom you shared adventures around the world, laughed at inside jokes and received moral support from after a tough day at work, the pain is almost too great to bear. But bear it we do.
The recent Alzheimer’s Association study points out a lot of issues caregivers deal with often, if not daily. More than 15 million Americans provide unpaid care to someone with Alzheimer’s disease. If that number doesn’t impress you, this one should: 83% of assistance provided to older adults comes from family members, friends or other unpaid caregivers.
The study goes on:
“In 2015, caregivers of people with Alzheimer’s and other dementias provided an estimated 18.1 billion hours of informal (that is, unpaid) assistance, a contribution to the nation valued at $221.3 billion. This is approximately 47 percent of the net value of Walmart sales in 2014 ($473.1 billion) and eight times the total revenue of McDonald’s in 2014 ($27.4 billion). The value of informal care (not including caregivers’ out-of-pocket costs) was nearly equal to the costs of direct medical and long-term care of dementia in 2010.”
Yeah, that’s real money. And it doesn’t include our out-of-pocket expenses for security, paid assistance (not tax-deductible or covered by insurance) or additional caregiver medical expenses due to stress, injuries from lifting the person we’re caring for, and so on.
Add in the stigma attached to Alzheimer’s, and you’re looking at a ticking time bomb.
“Alzheimer’s remains the sole major cause of death in industrialized countries that lacks a disease-modifying treatment — despite billions invested in trying to find one.”