Saturday, January 7, 2012
I understand that confusion is a rather normal symptom at the end of life. However, I usually find this attributed to the patient more than the caregiver. Dave has shown bits of confusion, but I am beginning to think I have more than him!
I am confused. I am confused about Dave’s state of health. I confused about how to take care of my own self, even in knowing what I should do. I am confused by how grief is so distracting. I am conflicted about all the in-betweens.
Dave changes from day to day. One moment I am seeing and helping a very ill man. Then next thing I’ll know I feel like we will be here in this state of being for a long time to come. He is coherent, thinking, reading the paper, even working on the crossword puzzle. Granted, I haven’t seen a finished puzzle in months but the fact that he wants to engage his mind in this activity is amazing. So the ups and downs of daily health are very confusing. It’s like I just don’t know how I’m supposed to feel. Hmm. I feel like Charlie Brown with Lucy pulling the football out from under me. I set my thoughts on either grief or settling into getting comfortable with how it is at the moment –it doesn’t matter which in some ways– only to have my emotions changed to the other state. Up and down. Trust and hope. The ball jerked out from under me. I fall for it every time. Sometimes the coherent Dave and weak Dave occur within the same day; other times it may be over a few days. There is no rhyme, nor rhythm, perhaps not even reason to how he will be operating in our world today. (Are there two worlds now that he straddles?)
I am frustrated that I have lost my personal independence in the caregiver role. Until last month I could pretty much run errands or head out for a couple of hours at most any time of the day. First, it was a matter of not leaving him in the evening. That hasn’t been a big problem as I don’t go too many places at night, and there are lots of people who can be here at that time. It was in November that I had a speaking engagement and I realized Dave wanted company during that time.
Next it was my anxiety over being gone much longer than 1.5 hours. Was it me or him who needed the reassurance? Maybe both. I would only go out during his known sleeping time. Then I started asking if he wanted company. As the answer became “yes” more often I noted that he is the one in need. Now I find myself suggesting I go out and he doesn’t offer the “I’ll be OK for a while” that I want to hear. We do need someone here now. That began in early December. That’s my job to make the schedule work.
Now, I have to acknowledge and resign myself that I must call on someone to help me take care of Dave. It confuses my sense of independence. Why is it so hard? For one, I don’t have any spontaneity. As a coping mechanism until recently I could go shop, for groceries, office supplies, or leave on a whim of an idea. It didn’t matter. I just ran out for a while. I could find a change of pace and scenery anytime. I might go work out with a friend, or look forward to my Sunday walk for an hour. There was my weekly strength exercise. I was getting used to small grocery runs for convenient, perishable foods that I like, especially since Dave doesn’t eat what I do now. Or, I could grab a fast food run at dinner time when I had a craving or didn’t want to cook. Even the quick runs are gone now. No changing my mind about what to eat. My habits had included at least three days a week for my combined social / health time, plus some shopping, grocery, self-care and household errands randomly attended.
Second, now I have to think it through. What’s important? And what is important enough for me to interrupt another person’s schedule for mine? This is the most difficult in asking. Then I realized that with all the family people I can call most are not available in the day time because they work. I am learning. I am making some calls for help. I am taking advantage of when people are already here for visiting to step out briefly based on the comfort of Dave’s needs at the moment.
This week I’ll decide what I need when and will request a hospice volunteer for a regular time. Weird, as a previous volunteer myself I know how awkward it can feel for the family to call on a “stranger.” Here I am on the other side reluctant to call because I want both to utilize the time in an important way and I haven’t known how Dave will respond to someone new coming in. It is an interesting moment of need from this perspective. I know all the volunteers are amazing and respectful, but I still have a bit of trepidation in calling.
But for me, even with solutions at hand, i recognize that I have lost my spontaneity and independence. It hurts. I have to plan. I sometimes have to have a back-up. I don’t want to depend on any one person because there may be much more need later. (Or, not. Who knows?) How do you call someone to come over at 8 am on a Sunday morning? I just don’t like asking, because I don’t think I’d want to do it. Often the plan involves more than me and the effort seems like more trouble than it’s worth.
I know that there are a boatload of folks willing to come over for the asking. In fact, I know this would be a great thing for them. Yet, I just don’t like making the calls even when it means I am taking care of myself so I can take care of Dave.
So this brings me to the exhaustion of grief and being a caregiver. The ups and downs. I spend so much time writing and thinking about some of this I wonder about myself. Is it normal? I know it is: The lack of concentration, the difficulty in asking for help, the ups and downs of what I see and experience in Dave’s health. Watching and waiting and questions of worthiness are all normal. The frustration at not having my own life is normal. The wishing it would end is normal. The wishing I didn’t have to endure this and Dave didn’t have to endure this is normal
Yet, I wouldn’t have it any other way. I am privileged to witness and share in this stage of Dave’s life. This past year has given us some of the closest moments we’ve journeyed together in our marriage. There is continued learning and laughter and tears. I can’t fathom him not being next to me. And that, too, is very confusing.