I think I might have mentioned that I recently had a conversation with a woman who has been caregiver for her husband for about 17 years. She was a wealth of information on a lot of subjects, even though our particular caregiving issues are not the same. Toward the end of the conversation, almost in passing, this woman said to me, “Try to preserve the friendship.” What? That wasn’t what I was expecting to hear from her. We had already been through the discussion of balancing the caregiver (somewhat mothering) role, versus the wife role, but this was different. This wasn’t just being honoring, this wasn’t just setting my heart on Strokeman to love him come what may. This was a letting down of barriers – and I did not really want to go there. It sounded like a painful endeavor, and it sounded like a lot of work. But here I was getting this advice from someone who for all practical purposes has more reasons than I for rejecting that concept out of hand. After I hung up from the 2 hour- sitting in my car- conversation, I began to drive to my next stop of the day while mulling this concept over in my mind. Preserving the friendship. What did that really mean? What would it look like? How do I even do that? I began to pray that God would help me figure out how to proceed, and to give me the gumption to rise to the occasion.
I started small. On my day to have a sitter and be out and about, I called Strokeman on the way home and asked him if he wanted me to pick something up for dinner. He was so grateful! It did him good to know that I was thinking about him even when I was not there, and that I wanted to do something for him. Well, that was easy! And it didn’t hurt a bit. Friends let friends know they are being thought of even when they aren’t around.
Then I started trying to find things to tell him about people we know – funny things they said on Facebook, difficulties they were facing, cute pictures, etc. I started watching a movie with him in the bedroom and sharing my chocolate stash. These were things we did before, but I had gotten to where I tended to get him settled and then settle myself in the other room with my chocolate to have some ‘me time’. Well, there is nothing wrong with ‘me time’, unless it doesn’t leave time for ‘us’. Part of the reason I had stopped the ‘us time’ was my effort to coax him out of the bedroom into the wide world of life. Uh, it wasn’t working. Preserving the friendship means that sometimes I come into his small world. Friends make compromises.
I began to read to him from different books I thought might be helpful or interesting to him. On the rare occasion that he would decide to sit in his chair or join me on the porch, I put aside whatever I was doing and gave him my full attention. If I got a text I read it out loud to him, so that he would not worry about secrets being kept. I offered affection without having to be asked, I teased with him. I told him about sermons he had missed, or new insights I had gained. I had to do this with low expectations, because sometimes the only response I got was a grunt or a one word reply. When the response was not enthusiastic, I let it drop. Friends share life, and then sometimes the are polite enough not to.
As things progressed, it became more clear what preserving the friendship meant. Sometimes it meant confronting him on things he did or said that were hurtful or just foolish. I think it is easy when someone is sick or disabled to make excuses for poor behavior and just suck it up. I realized this was not being a friend. Instead, I found that I needed to get in his face about a few things that had been cropping up. I refused to accept responsibility for things that were not my fault. I spoke plainly to him about his responsibility, and about the consequences of choices he had made about the way he was going to conduct his life. It was actually quite helpful to him to hear me express these things. It helped him see what he could do to contribute to the friendship. And it helped him see that I was interested in working through issues with him and resolving conflict. Friends speak the truth in love, ask for forgiveness, and offer forgiveness.
One of the hardest things to discern for me is what one’s response should be to a friend who appears to be making poor decisions about his life. Do I take the “tough love” approach that seems to be the common advice I get? Or do I just give it up completely? What does a friend do? I had tried the tough love approach and found it to not be effective. It caused strife, it made Strokeman feel defensive, it made me feel frustrated, and we were not making any progress. But when I just gave up, and left him to lay in the bed, he felt neglected and suspicious, and I felt discouraged and disconnected. What’s a girl to do? I decided that I would communicate with him what I thought would be best for him, and then let him choose. If he voices the desire to do a particular thing, I do everything I can to enable him to accomplish his goal. I help him schedule his exercise, the time and content of his meals, his shower, his rest, so that the chances of him actually being able to go are at their height. I make calls, go on reconnaissance missions (scope out bathroom facilities and parking spaces), and check the weather forecast. Then, if it comes time to get ready and he says, “no”, I let it go. Friends are helpful and encouraging, not nagging and overbearing.
Sometimes things will rock along pretty good for several days and I will be thinking how calm life has become. And BOOM out of nowhere that pesky brain damage rears its ugly head. The other day there was a display of what can only be described as territorial chest pounding. My fear had been that if I let down my guard and started working on the friendship these episodes would be a greater disappointment and more painful. Not so. Instead, I was able to take comfort in knowing that a good portion of the time we can be almost normal (the new normal – the normal that includes laying in the bed and being afraid to leave the house). It makes it more bearable somehow. Friends weather the storms together.
Here’s what I have learned about preserving the friendship. It wasn’t all that hard. In fact, it made all the other things about being a caregiver easier. When you are making the sacrifices, doing the serving, showing up for work everyday without the friendship, it is a chore. And when things aren’t easy or convenient all you have is the discomfort. But if you preserve the friendship, then when the rest of it is hard and frustrating and messy, you still have the friendship. It’s a comfort. Even so, I think there was this little hope in the back of my mind that preserving the friendship would be the key to Strokeman deciding he wanted to get better bad enough to do the work. Well, not so much. Yes, he talks about trying more, and I suppose there have been tiny increments of change, but for the most part, he still lays in the bed and talks himself out of doing things and going places. But meanwhile, he knows that I love him, and I like him, and I respect his right to determine his own path. The truth is, I don’t know what he is really capable of. This may be it. I know that on the rare occasion he manages to leave the house it is as a result of a major internal battle. So when he manages it, I try to make it as comfortable as possible for him. And when he doesn’t, I let it go.
So I can say to you, my dear reader friends that it is more than worth it to preserve the friendship. But don’t be too hard on yourself. I am in year 2 of this. Maybe you are in the first few days or weeks or months. There is a time for self preservation. There is a time of sheer survival. But when you can, in those moments when you manage to catch your breath, don’t be afraid to hold on to the friendship. You won’t be sorry. It might even be the very thing that gets you by.