Dementia Digest #1: I Didn't Sign Up for This

When you got married, you probably were hoping to grow old with your spouse. Your relationship would become richer and deeper through the years as you enjoyed life and tackled challenges together. And if either or both of you fell ill, you’d care for each other and see it through, somehow.I hope that’s how it goes for you.But things happen that are not in our control. Your parents get divorced and Mom gets Alzheimer’s Disease. Who will care for her? Your mother passes away, and Dad is unable to care for himself. In other still more complicated scenarios, both parents get dementia, or a remarried parent dies and leaves a spouse who needs care. A brother or sister gets early-onset Alzheimer’s. Childless couples and individuals, previously self-sufficient, are discovered to be malnourished, living in squalor and financial chaos. How did this happen?Sometimes dementia is a predictable stage in the course of a disease. Most of the time, though, we are happily unaware that our loved one’s brain is malfunctioning. Then something happens that opens our eyes to the extent of the damage and we are shocked. Then we’re angry. And frightened.How Did This Happen?Here’s what I think is happening. Our ailing loved one is usually older than we are, and we’ve looked up to him or her. Fathers, mothers, husbands and wives and older siblings: these are the people we count on either to guide us or at least to manage their own affairs so they don’t need us. Our kids may need us. Our younger or known-to-be-struggling siblings may need us. But not our pillars.And a person in the early stages of dementia usually doesn’t appear to be ailing. They’re not sick in the way we think of sickness. They look fine. Nobody sidles up to you at Thanksgiving and whispers, “I think I have Alzheimer’s.” Because those with dementia don’t think they have it.The truth is, they’ve been coping, just as we learn to cope all our lives with new difficulties, with adversity and our own shortcomings. They’ve been crafting work-arounds, pretending they remember things, telling themselves it’s just these newfangled technologies that are making life unnecessarily complicated. If one of the symptoms of Alzheimer’s Disease is a loss of good judgment, how is a person supposed to assess her own condition?And another thing: anosognosia, a deficit of self-awareness due to brain damage. It’s one of the more frustrating aspects of caregiving, because the patient believes, in spite of all evidence to the contrary, she needs no care. That’s right, 25%-80% of people with Alzheimer’s Disease think they’re just fine.So just to recap here: There’s a person who’s always been able to care for himself and others, who’s been hiding new, overwhelming problems, and who doesn’t think there’s anything really wrong with him. So naturally he tells you he’s great, and even if you think maybe he’s slipping a bit, you don’t want to be disrespectful, so you let it go. You tell yourself he’s getting older and maybe a little quirkier. And you let it go and let it go, until the police call to tell you they picked up your dad because he was walking on the highway at 3:00 AM with no pants.That’s why it’s shocking. That’s what you didn’t sign up for. But it’s here, and the police want you to come and get Dad. And you’re shaken to the core. What now?Adjust ExpectationsI’m suggesting here that we all begin to think in terms of preparation. Let me explain.When I was growing up in the 1970s and 1980s, my people of my grandparents’ age were dying in their sixties and seventies of heart attacks, strokes, car crashes and cancer. These are (comparatively) quick ways to die. In 1980, Alzheimer’s Disease wasn’t even on the list of top ten causes of death for those 65 and older. Now it’s number five on that list. And it’s a sloooooow (and expensive) way to die.So of course Alzheimer’s and other dementias are not on your radar. Those things happen to someone else, right? Okay, it might not happen to anyone in your family. But if it does, you need to be ready. What might that mean for you and your family? Why not start talking about it now?Check Their Safety NetMaybe it means keeping a closer eye on the older folks in your life. As in, calling and visiting. Exactly what they’ve been wanting all these years, right? Find out who’s in Grandma’s social circle. Church people? Colleagues? Old friends? Do you even know who these people are? And if they felt Grandma was a little off, would they know who to contact and how to get in touch? We tend to pursue separate lives these days. Maybe your loved one has chosen to live in a different city or continent. How can we, naturally and graciously, find out if Grandma has a social safety net?My sister and I used to visit Mom and, when she still went to church, we’d go too, and find out who her friends were there. Sometimes we’d chat with her neighbors, bring them cookies, sit a while. We exchanged contact information with Marcie, who lived a few houses away. And, once in a while, we contacted her to find out if Mom was okay, when our aunt was unavailable to check on her.Prepare Your Extended FamilyMaybe being ready means starting a dialogue with your siblings and cousins. What about your never-married uncle? Who checks up on him? Does he have a safety net? Is there someone willing to take a trip to his place twice a year and get inside his house to see how he’s really doing?No, you didn’t sign up for it, but you shouldn’t let dementia blindside you. Keep an eye, maybe two, on your older relatives. Keep in touch with younger relatives and compare notes. If it appears something is amiss, work together with them to take action sooner rather than later. It’s likely you’ll need each other at some point. These are your people. If those relationships are already in place, you’ll be much better prepared for whatever happens. And if nobody in your family gets dementia, at least you’ve spent some time building relationships with extended family members. That’s a good thingLinkThe Alzheimer’s Association has published this helpful list of early signs and symptoms of Alzheimer’s Disease.