Turning the Page

Dementia looks different on every person. Unlike many who suffer with it, my father is mild-mannered, compliant, and easily calmed. I know logically that this makes it easier. The few people who still interact with him – his Hospice nurse, some of our old friends, acquaintances we run into at the grocery store – think he is the sweetest, most delightful gentleman; and he is, in those contexts. He will nod, smile, and agree with everything they say: “Oh, yes, it really has been a long time since I’ve seen you. How are you? How’s everything…down your way?” He has no idea who they are, and in fact, last week he didn’t know who I was. This man, who was once the greatest sandwich maker of all time, will now, if he remembers to eat lunch at all, make a sandwich with whatever is at the front of the refrigerator. Friday it was grape jelly and ranch dressing.

So he APPEARS pretty okay to other people, a common phenomenon called “showtiming.” But in fact, it’s due to a delicate balance of medications, environmental control, anticipating his triggers, reading his mind, and intervening as soon as the slightest hint of agitation shows up. If a dementia patient experiences something that causes them to go off the rails mentally or emotionally, they may not ever return to their previous normal. And Dad’s physical health is great, so that could mean years more life with a truly awful existence.

Twenty minutes ago, Dad was sitting peacefully in a big wing chair halfway between the kitchen and the den, with a book in his lap, reading the same page over and over, as I typed this. Now he is yelling (but not really, because he can’t even speak loudly) at Cosmo with real alarm because he thinks Cosmo is chasing one of the dogs down in order to force feed it a clothespin. This is based on the fact that Cosmo is holding a clothespin and is in the same room with the dog. I had to make Cosmo give up the clothespin in order to soothe Dad, which Cosmo felt was unfair and refused to do, so Cosmo went to time-out. Now it really is unfair, but what else can I do?

While Cosmo is still wailing in the corner, Dad comes to me and pulls a mini flashlight out of his pocket. This is the same flashlight he and Cosmo have been fighting over all day because normally he lets Cosmo play with it, but today he is afraid it will get broken and we’ll have a power outage and he’ll be trapped in the dark. I’ve explained repeatedly that we have many flashlights and many batteries, and it’s not worth fighting over, and I’ve taken it back from Cosmo and replaced it in Dad’s room half a dozen times. Yet somehow the whole scenario keeps repeating. This time, he shows me the flashlight and says, “I think I rescued this thing somehow, but I don’t know what it is.” And before I can respond, I hear wailing coming from Evelyn’s room, where Cosmo has gone to try to “help” her vacuum, and she has no doubt had enough and now they are both screaming at each other. She will say he bit her and she knocked him on the floor in self-defense. Nevermind her size advantage. I don’t even ask; I just stomp back there, snatch him up – a writhing mass of fury – and struggle back to the dining room, back to the Time Out corner. I can barely keep him from flailing out of my arms as he shrieks into my ear the whole way.

WHEW…

I wrote that probably three months ago. Shortly after, Dad was discharged from Hospice because his health had improved so dramatically that the doctor felt we could have “years ahead of us.” What a wake-up call that was! You can handle a lot when you believe it’s for a limited amount of time, but when it stretches out into infinity…you have to count the cost.

Dad, like many people with dementia, does best when things are calm, quiet, and orderly, with only one person at a time speaking, and that person always being very even-keel and cheerful. But for a growing family, this is not normal, or even desirable.

I knew I was consumed with his care; all my mental and emotional energy went there, and all my physical energy was split between him and Cosmo. I had almost nothing left for anyone else, let alone myself. My kids were living in a depressing home where they never came first, and everything – when we ate, when we left the house, how soon we had to come home, what we could watch on TV, what temperature we set the thermostat, what words and subjects we couldn’t say, what tone of voice we used – revolved around Dad’s ever-changing needs. The girls began staying in their rooms almost all the time because at least there they could control their own environment. Steven was disappearing into his pinball room/man cave, or into his phone reading science articles. Everyone was saying they were fine, that this was fine, but it WAS NOT.

The situation had gone on long enough that I was sacrificing the living for the dying – and for me, that was a violation of something truly sacred.

Professional caregivers work in shifts because they cannot do their job properly for 24 hours at a time; why should I expect myself, with the added burden of the emotional weight, to be able to do what they can’t? Yes, I have a duty and desire to make sure my father receives the best care possible, but I do not have an obligation to be the sole provider of that care.

By the grace of God and a truly miraculous series of events, we were able to place Dad in an assisted living facility in a nearby town. When we went to evaluate the facility and meet the staff, we walked in the door and I smelled…nothing. Never in my life have I been in a place that cares for the elderly that didn’t have some unpleasant odor – let’s face it, it would be almost impossible to avoid it. But this place…nothing. The rooms had big widows and cheerful yellow walls, and as I stood there trying to imagine my dad sitting in his recliner in what would become his apartment…this lumbering black dog trotted around the corner and snuffled my hand, tail wagging crazily. He had a gray muzzle and a red bandana and I thought maybe he was a guardian angel, but it turns out he is someone’s seeing eye dog. And now he is my friend.

We moved Dad just before Thanksgiving. He survived the change, and I survived making it happen. Within a few days, he forgot that he ever lived with me. That stung – a surprising piercing pain – but it is much better for him. I can’t say he’s happy, but he wasn’t happy here. I’m not sure how happy you can be when your brain is dying. What I can say is that he is safe, he is treated with kindness, and he has at least 2 girlfriends, although he doesn’t know it.