We're Not Alone

I think what bothers me most about Robert asking “what is a kite?” or not remembering the name of his roommate is that it is such a dramatic change. It’s a splash of cold water on my face; it’s a reminder that there is a decline going on.

People deal with this sort of change in behavior with their loved ones all the time. 30 million people worldwide have Alzheimer’s Disease. Three million people in the United States have Epilepsy (although not all people with Epilepsy have uncontrolled seizures to the degree Robert does). Not to mention all the other conditions that can cause memory loss or dementia. These people have families or friends who are caregivers (not all, but many).

That’s a lot of patients. That’s a lot of caregivers.

As caregivers we have to be prepared for the “new normal” which can change infrequently or be as dramatic as daily. Robert not knowing what a kite is was a pretty drastic change for me. Somehow, his incontinence is not. It’s probably because there was a gradual onset to this behavior. First, he had accidents when he slept. Then he had accidents during the daytime. It crept up on me and just became something else to manage. It’s “normal” to me now that he wears briefs at all times (and, we’re trying something new: two briefs at nighttime which seems to keep him a bit dryer!).

Maybe the physical changes are easier for me to accept. Robert uses a walker and I’ve accepted the fact he will eventually end up in a wheelchair. Robert walked unassisted up until a few years ago but I see the problem he has walking and keeping his balance and accept that as the normal consequences of years and years of seizure activity. Robert is pretty slow to respond in conversations or when it’s his turn to play cards (and I have to adjust from hyper-speed while at work to his much slower pace when I’m visiting). I expect this. It does not throw me for a loop when he’s slow. I know he’s slow; he’s had years of electrical activity in his brain and is on enough medications to put down a horse. I accept this.

The intellectual and memory decline affect me more and are more difficult to accept. I think it bothers Robert, too. His tone of voice when asking me “what’s his name?” makes it seem like he is a bit worried about not knowing. I think he realizes he used to know the answer. People caring for their loved one affected by Alzheimer’s Disease watch this decline all the time and it’s not easy. To care for your mom or husband and not have them recognize you is nothing short of brutal. The people I know going through this are strong and tough even though they are hurting. These people watch the decline in their loved one while secretly wishing they could experience a bit of mothering (“are you okay, honey?”) or have their husband know that the person caring for him is his bride of thirty years.

There may come a day when Robert doesn’t remember his family (heck, he already calls my step-son “Steve” which isn’t even close to his actual name). One day, I may just be the nice lady who visits him but who is a terrible card player. I am okay with that (except the card playing part. I really should practice more).

I don’t know how he’ll pull it off but I have a sneaking suspicion Robert’s mental decline will not affect his card game even if he doesn’t know who I am!