Sunday, October 20, 2013
A change in perspective
Something has happened inside. An altered perspective that suggests that my focus might need to change.
I recently had two weeks away, with wonderful, reliable care for A. at home. A. had a nagging cough before and after that trip, resulting in two visits to the doc after my return. Prior to finding the right combination of medications to address that cough, he had a (small) physical and (large) cognitive meltdown. These events have awakened a new calculus for me.
The cough began August 21. As of my return from the trip, he was coughing so much I took him to the doctor and we began increased inhalers. As of October 9, he was full of sputum (which he spit in sinks and on counters, not rinsing at all, so they hardened into gluey 50 cent sized pieces everywhere), and at the same time he was urinating in his pants, in his PJs, on the floor and on the rug. Most sentences over three words in length were completely incomprehensible to him. I would ask, for instance, "do you want to put on your shirt?", and he would stare off into space, muttering, "shirt........shirt.....", as if it were a word in a foreign language. And he couldn't come up with words of his own, so it was nearly impossible for us to communicate about his needs.
I had recently initiated the practice of helping A dress in the morning and get ready for bed--mostly to head off this summer's growing practice of his tossing all his clothes on the bed and floor--way more than he could possibly have worn in a given period. Since I could not tell which was dirty and which was clean, I was washing almost all his clothes every washday. So, thought I, I would help him choose clothes in the a.m. and then put them in the hamper at the end of the day--keeping the room tidy, the bed clear of mounds of clothes. Ensuring he could find what he wanted and do all he needed to do to start and end each day. When he was at his worst from the 9th to the 12th, he couldn't even get dressed. I was stepping in urine on the rugs and on the bathroom floor, scraping dried mucus off counters and the sinks, dealing with wet underpants, pants and pajamas. We began to use male incontinence pads (greatly resisited for awhile, and besides, they wouldn't stick and thus were quite ineffective) and later full Depends, when A. was so out of it he didn't seem to care.
Even the smallest infection can seriously alter the cognitive ability of a person with dementia. As she or he recovers, the cognitive piece gets better as well, back to something resembling the old "normal", but not quite there. Having finished a round of antibiotics, A. is cognitively improved, but not to where he was before he got sick. I have observed many times that once you see a new behavior or decline in cognition, it may come and go for awhile but over time it becomes permanent. To think of last week's picture as ever being what happens 'normally' just makes my heart break for both of us.
So, A. has climbed out of last week's hole, but he is still coughing and "phlegming" a great deal. Hacking even more. He still has problems understanding many verbal exchanges and has trouble finding words he wants to say. He is getting up, walking into another room and standing around staring, as if confused as to what he wants and/or where to find it. He has fallen several times.
Do not read what follows as an angry rant. It is just a list. I am the nurse. I am the housekeeper. I am the professional shopper. The taxi driver. The social secretary. The bookkeeper. The med tech. The activities coordinator. The laundress. The companion to a person of limited awareness. All that while keeping my own fear, anger and despair (in equal proportions) at bay and instead mustering cheer and interesting options for the day. Lately I have been more short of patience than I am comfortable with. Muttering to myself, "I am just the maid. The maid will do that. Leave it to the maid." Groaning (softly) out loud instead of silently when he once again falls, or cannot comprehend what I am trying to say as simply as I can, or when he can't come up with words and expects me to stand there patiently while he says, endlessly, "I want.....the ..... I want the........ the ......What do I want? Do you know?" I am actually good at guessing correctly. (He gives me a lot of time and opportunity to practice.) I am not mean to him. I do not yell. Yet occasionally my tension is clear in my voice and this disappoints and shames me. Although I 'get' it--this happens in a situation like this--I am not comfortable with behaving this way.
Lately, I am sharply aware that I just don't want to be doing all this indefinitely. (I could do it for quite a while if I knew there was an end in sight. But I don't see any end.) I want a life. I want a chance to have some freedom before I become old and sick and immobile. I want to take off and not have a plan for when I get back. I want to do stuff until I want to stop, instead of when I have to come home or fetch him or take him to an appointment. I want to run away--to see a movie, to go up the coast. To drive to another state--many states, visiting friends along the way, or maybe spend the night in a clean bed in a hotel in a place I've never been. I want to sleep late, or get up at dawn and leave the house, come home when I want to, stay out all night if I want to: see a meteor shower, or watch the moon.
My life is melting away like an ice cream cone on a hot day--a cone I can't eat because I am helping to take care of my child's cone. But A. is not my child. I have no hope of his growing more capable, more interesting, more aware, more insighful, more companionable. When I had children to care for, I had every reason to look ahead with certainty for these things, and, in my husband, I had another grownup to share responsibilities with and to be my companion on nights and weekends. And I was in my 20s and 30s, not close to 70.
Weekends. Last week it was a three day weekend. Friday afternoon rolls around and my heart sinks. Yet all around me, people shout out, "Have a nice weekend." There is not much one can do with A.--and even less with a sick A, like it was last weekend. Even on a good day, his balance is bad, so there is no safety for walking on trails or at the ocean. (He is S-L-O-W, so no walking a distance anywhere, really.) No hanging out in the nearby city, or taking the train to a really big city. His food habits are not pretty--since he cannot see well-- limiting the enjoyment of eating out. Besides, we can't afford it--we need the money for his care and his meds. He doesn't understand most tv series or movies. He gets mad at me if I walk too fast, or if I hold onto him to keep him from falling behind, or just from falling. He has no stamina. He falls asleep in the car after about 5 minutes. He needs everything explained, and still doesn't understand. He asks the same questions over and over. When I tell him something I am thinking about, he responds in platitudes, or little sermons about 'that's the way life is'.
And so we are at home with one another a lot. Because he can't be trusted to be left alone anymore or to go out walking by himself, I am under a kind of house arrest--on the weekends it feels like it will never end. Yes, I can get A's companion over here to spell me, and I probably should do that more often, but it costs $60. for four hours, and I still have to watch the clock to come home by the deadline. Sometimes it doesn't seem worth it.
A few days ago when I was looking (for the first time ever) at a residential setting option, the person I was talking to said that care is often a good thing for a relationship, because the well partner can resume being a partner instead of wearing all those hats I listed above. That made sense to me. Also, I think, residential care allows the well partner to resume being a PERSON again to herself. And yet I cannot imagine explaining to A. that he needs to go to The Home because I desperately need not to lose my life. But that is exactly how it is--and I fear I might otherwise never again have the freedom to do what I want to do, explore what I want to explore, tend to my own needs for novelty, intellectual stimulation and spontaneity. That he will outlive me, literally or figuratively.
What has changed is I think about this often now. It's probably the last 13 years of care, now taking its toll. It's the not knowing anything at all about how much longer it will be. It's also the awareness that people I know well who used to walk this path with me have been liberated: their caretaking years are over and they are on to the next chapter. Several people I work with, several friends. I envy them, even at a time when they are grieving. I don't feel good about that, either.
I have no idea what I am going to do about this, but I don't think this new way of looking at things (from the perspective of what I need at this time in my life, instead of what A. needs) is going to fade. Internally, I have reached a new, quite uncomfortable, 'normal', this time relative to where I am more than where A. is.