First, an aside: these entries give me a chance to sort through how I think about what is going on, and to share more detail with others than I could ever find a time to do in person. Time alone with anyone other than J is very limited these days, and the answer to “So, how’s it going?” is much longer and more complicated than it used to be. One loss that occurs in caregiving is that of open and relaxed relationships with friends. If we are spending time as a couple with friends, conversation is quite abridged, dancing around the central issue of our lives. If I am on my own with a friend, I’m likely to spend too much time filling the person in with what’s happening, and leaving less room for ordinary friendship and regular give and take. Friendships can slip out of balance that way, so one way to offer the information about our lives is through a blog like this, which might help save friend-time for more fun or reciprocal stuff.
Two things have happened recently that make me see that things are different – changing – since last year, and that I really need to step up in new ways.
The first was getting home from almost two weeks away, visiting relatives. We spent part of the time together, and part with me going on to a wedding and J staying with her relatives. When we got home after two weeks of constant company and activity, it was extra clear to me that J’s home life is getting quieter and quieter, and that it is really up to me to arrange daily activities to keep her feeling useful and engaged.
The second was my spending three days last week basically flat in bed with a gi condition. It’s been a long time since I was sick, and this experience really illustrated some changes. J could bring me ginger ale, and check in on me, and that sort of thing, but in between dealing with me I noticed that she was just sitting, or pacing around. She was not able to think up how to engage with someone else, for example, like calling a friend. She came into the room fairly often, probably worried, probably bored, and I finally had to ask her to leave me alone for a couple of hours – just the effort to pay attention and be pleasant was exhausting me.
So, it is time to look at more formal, regular kinds of help. And this is the tough part – the last time we discussed and tried to arrange companion services, for instance, with a very pleasant woman from a local agency, we had basically the worst fight we’d ever had. J is NOT interested in discussing her memory loss, or what the impact is on how we live, or ways to make it easier. In fact, trying to discuss it brought out a side of her I had frankly never met, in twenty years of truly compatible relationship.
Combine her reluctance to discuss this with the frank amnesia for the problems, and it spells the need for a really different approach.
Being sick gave me lots of time to reflect, and I saw that there is another issue – emergency plans. Let’s say I was delayed getting back from an errand, or got in an accident – J can no longer be relied on to handle the situation on her own. Now, I don’t leave often, or for long, but I do still run occasional errands, take an hour walk, attend an hour-long group, and things like that as conditions (J’s health and attitude, mainly) permit.
It’s approaching the time that we have someone here when I need to out of the house, and until that can be set up, there needs to be a detailed plan for any type of delay that could occur.
And then there is the matter of the weight of all this – it’s scary, at times, the responsibility. It used to be responsibility halved, with each of us pulling our part of the household load. Now it is almost doubled, as J becomes less able to pull. And it’s lonely. The companion I’d have been discussing all this with is no longer really there, much of the time.
It’s calling on me to majorly pull up my socks, do the research, and make some plans. I’ve always been vulnerable to “what other people think”, and can get into awful tangles of inner dialogue, reviewing over and over what I think I should do against what I think someone else would think I should do. Clearly, that needs to stop. It’s one thing to take another’s point of view into consideration, but another altogether to become paralyzed with indecision. Other than that, I am pretty good anyway with household chores, basic finances, and general organization, so I am grateful and aware that we could be coming into this phase with much fewer resources.
Friends and family have been giving amazing help and support – visiting, calling, emailing, taking J out, inviting us to visit, and so forth – and I realize now that it’s time for more structured support in addition to all that. We need our friends and family to be free to reach out as time and energy permit, not to feel tied up in obligation to us. So, stay tuned as I plunge into serious research and planning for the next levels of support that we need.