Tuesday, June 4, 2013

Full Circle

Full circle, from home to hospital, three months of trying to find long-term care placement and now, unexpectedly, Pat is home again. I never thought I'd see him in our house again, lie next to him in bed, greet him in the morning with the time-honored, "Want a cup of coffee?"

It wasn't my idea. I thought we'd find the perfect nursing home or an assisted living situation in California that didn't cost an arm, a leg and a few internal organs. I thought I'd surely have found a job out there by now. I thought we'd have packed him into a motor home and safely delivered him to the place we both long to be. But that isn't what happened.

The day I brought him home, I had no clue how I would do this home caring, even with help. The alternative, however, was letting the psychiatric hospital court (yes, these places have courtrooms on site) remand him to the state hospital in Las Vegas, New Mexico. It would have been okay with me, as I've heard their long-term care ward is pretty good. But when I spoke to the case worker there, she told me that, even though I have medical Power of Attorney, am named in Pat's advanced directive, and am his court-appointed psychiatric guardian, I would have no say in his long-term care placement. Since there weren't any beds currently available at the state hospital's nursing home and he didn't need to be hospitalized any longer, they reserved the right to place him in any nursing home anywhere in the state that would take him.

If you've had experience with Medicaid-funded nursing homes in poverty-stricken states, you know how scary that scenario was.

UNM Geri-Psych had given me less than a day to find out what my legal options were. And, of course, all the senior legal assistance people said they couldn't help, given the brevity of the time frame. So, fearing that the court would side with the hospital, I asked for Pat to be discharged before the hearing took place. Our dear Cousin Molly once again stepped in to help drive Pat to Santa Fe and to get him settled a bit at home. The first night, he slept over 13 hours, as if making up for all the sleepless hospital nights.

Since then, he's been sleeping really well, eating like a racehorse and seemingly enjoying himself walking around our backyard in the warm afternoons. We breakfast, then go for a regular walk around the neighborhood, then he sleeps for a couple of hours in what I think of as the miracle chair, a recliner/rocker we got for a hundred bucks. After that, lunch and then about three hours of a combination of pacing the backyard while talking ceaselessly to himself, listening to me read, whistling along with music and, just occasionally, getting really really angry at nothing. Then dinner, another walk around the neighborhood and a gradual dropping off to sleep. Strangely, it's pretty manageable. I'm writing this while he's doing his afternoon rounds of the house and yard.

I treat it as his job, the work he does while I do mine. It's a way for him to use up energy, to get some sunshine and exercise, and to keep busy in his own way. I wish he could do a bit of actual work with his hands, sit and look at pictures or read a magazine. But my acceptance of what he's able and willing to do makes the day much less stressful.

Part of what has shifted is my attitude. This past year has been a profound spiritual voyage for me. At some point, as the result of an entirely (so I thought) unrelated support group, I began to turn my full attention to God's voice. At first, it was just a prayer and meditation time in the morning. Over the months, it's become a more or less frequent conversation with God, punctuated with moments when I haul myself out of whatever mud hole of fear and worry I've slipped into and step mentally into a circle of light I call the Presence of God. Sometimes I just breathe there for a few moments, calming myself before I resume my day. Other times, I ask questions, make requests, thank God for some tender mercy or beautiful bit of the world.

Why this helps, I don't know. I don't need to know. I find that I am cheerful much more often, that I can hold my tongue when Pat inadvertently says something hurtful, that I can be peaceful and supportive when he wakes me up in the middle of the night in a panic. I am caregiving out of choice now, and stepping out of the stress as often as I can. Even though I have less time to myself than I did when I felt frazzled and overwhelmed, I don't feel divided anymore. Taking care of Pat is my job, not something I have to do in addition to a job or job hunting. And because we went through weeks of trying and failing to find suitable placement for him, I'm fairly certain that it's the job God wants me to do right now. Not forever. Perhaps not even for more than a few more weeks. Just today.

Once of the best things about this time is that I get a "do-over." I get to treat Pat the way I wanted to before, but just couldn't. It's a living amends to him for my anger and impatience and it also is strengthening our relationship. I'd actually have to say love is deeper than it's been in some time. So as we approach our 12th wedding anniversary (July 1), there's a happiness I never expected to know again in this relationship. Full circle, indeed.