For Better or Worse

It had been well over a month since Charlie and I visited the nursing home where we volunteer.  I felt the familiar pangs of guilt building over the weeks, but since I had sprained my ankle it was difficult to get around and nearly impossible to get Charlie enough exercise where he would be calm enough for a visit to the home.  Yesterday I decided we had to attempt it, especially because after the weekly “running of the dogs” Charlie was reasonably tired.  The weekly “running of the dogs” is what takes place on Sunday mornings at the field near my uncle’s house.  Since my aunt passed away over a year ago, these weekly meetings had become even more important –not just to keep my uncle from being too lonely, but to have fun connecting with the family and let the dogs be their most fun, doggish selves.

So after leaving my uncle’s house and getting Charlie and me reasonably cleaned up, we headed out.  My dog absolutely loves these visits and I enjoy them myself (although sometimes it’s a little awkward when I run into the relatives of dates gone wrong – see Putting the Aww in Awkward for more details on that one).  He almost can’t sit still long enough for me to get us in our uniforms – him with a blue bandana with a picture of a wheelchair and a dog, me with a name tag indicating my volunteer status and a bag of treats nearby to entice him to tricks or hold his attention if need be.

We have a routine down and make our way through the lobby and upstairs to see our regulars, then back to the common living areas to see if anyone else wants to see Charlie.  It was a little trickier this time since I’m still hobbling around on this ankle boot and since it had been so long since we’d visited, Charlie was even more exuberant than normal.  Our first regular is actually more of a cat person than a dog one, but she likes looking at him and seems to enjoy our conversations so Charlie puts up with her feline preferences. 

It was our second visit that has me thrown still, over 24 hours later.  Mr. Vince* is the regular we’ve been visiting the longest.  He has a picture of Charlie on his refrigerator and arranged for me to meet his oldest daughter and her husband so they could see the canine superstar.  I’ve seen him slowing down with each visit, but the past year it seems his decline has sped up even more with a diagnosis that meant he couldn’t get a needed hip replacement, lessening his mobility and dampening his spirits.

He used to be a bit of a rascal –stirring up trouble in the nursing home like when he didn’t care for the fare at Easter dinner and made a poster in protest.  He loved giving the dining staff a hard time.  He went on all the field trips and loved to sit outside; seriously he had the tannest knees of any person I’ve ever met, from sitting out on the bench for hours.  When Loretta* moved next door, suffering from a recent stroke, he really seemed to pick up, piling on the charm.  They were inseparable.  He even devilishly told me he had painted her toenails one summery afternoon.  I noticed that her picture started appearing on his walls with greater frequency.  But as she started to improve and he started to worsen, I heard less of Loretta’s* charms. 

When we visited yesterday, he wanted to catch up on all that he had missed in the past month.  He was very concerned about my ankle and warned me to take care of myself so I didn’t end up in a wheelchair like him.  I assured him that I was being a good patient and switched the topic back to him, to hear what I had missed.  I figured he would tell me of a few visits with his daughter or about how his other daughter never comes by, and he did talk about those things.  But he also told me that in the month since I had last seen him, his wife had died.

I was completely floored – I had no idea his wife was still alive.  He had been alone in the nursing home since I met him about 3-4 years ago and while I had seen pictures of his wife and he mentioned her occasionally, it was generally in the past tense, or in talking about the last dog that they owned.  The way he talked about her yesterday, it was clear that she hadn’t been well for several years and that she had been in some sort of home or institution for a long time, apart from him.  And in the years I’ve known him, he’s told me about every trip to Cracker Barrel, every concert, every bus trip to Pennsylvania, but he’s never told me about visiting his wife. 

Not wanting to pry or be callous, I wasn’t sure what to say.  I think I just held his hand and offered my sympathies and coaxed Charlie over to sit closer to Mr. Vince* and do what I couldn’t do with my clumsy words and uncertainty.  As best as I can figure, her illness must have been severe with the onset happening earlier than his decline.  There was something about the way he described the beginning of her illness and her behavior that reminded me of how my family sometimes refers to my mom, and I wondered if his wife had some sort of mental or emotional illness that had eventually consumed her. 

A confirmed singleton who’s longest relationship clocked in at under a year, I can’t imagine what it would be like to spend all your life with someone and then to have move apart, not because of changing affections, but because you could no longer take care of each other or take care of yourself.  When discussing this last night over dinner with my sister, we both said we could never see our parents making that decision.  In this case, we said we could never see our mother agreeing to put our father in a home, even if it was the best thing for him, for it certainly will come to that as his Alzheimer’s rages on, robbing him of himself and us of our father.  But years ago, before he became ill, he never would agree to get our mother help for what now seems to be obvious to everyone, a very severe case of bipolar disorder, self-medicated by way of the bottle. 

Some people might think it sweet –not that my parents each have their own illness, but that they won’t let each other go.  I can’t see it that way, because for me it is more than just some impossible and enduring love story.  For me, they are my parents and father’s unwillingness to come to grips with my mother’s problems, now too late as he can’t hold on to anything longer than a few minutes, and my mother’s unwillingness to be separated from him, even to get him help, doesn’t seem sweet.

But then there are days like today when I see them together, and I think, what the hell do I know anyway?  I think that I know best, that they could get better treatment, be more active, not fade so fast, were they not together.  But really I have no way of knowing that is true.  And there is a part of me, I don’t want to admit it really, but this part of me that thinks or maybe even knows, that were they to be separated, they wouldn’t survive.  So even if because they stay together, they don’t get out of bed or eat or take their medications for days on end, maybe they wouldn’t get any better if they did it my way.  Sadly that is most definitely the case for my father as this vicious disease takes hold and there is no cure.  But even if I can’t understand how they choose to live, and I fight against their seclusion and slipping further into illness, maybe to them, being together is more important than being well.  And even though I want to scream and jump up and down until they hear me about taking their medicines and getting some exercise and eating, and the way they choose to keep going on makes me want to bang my head into a wall, in their own way, they’re happy.  Considering everything, happiness is not a small feat.

This post is dedicated to all those that have Alzheimer’s disease and those that spend their days and nights caring for Alzheimer’s patients, through good days and not so good days. 

And this post is in honor of my father.  I can still see you in there and I love you more than I can say. 

Don’t forget Alzheimer’s Action day is 21 September.  It is far past time to put an end to this disease.