Bedsores. The new reality. Michael is not completely bedridden so the single sore took me by surprise yesterday, but I suppose he now spends so much time in bed or reclining on the couch that it should have been expected.
Bedsores are caused by immobility and continued pressure on one spot for several hours. Blood circulation is impaired, so the skin is not being nourished and starts to break down. Fortunately, this single butterfly-shaped red sore at the bottom of his tail bone is only a day or two old and, from what I have read, is only at stage one, meaning there is no broken skin, no suppuration. With vigilance I am hoping we can clear it up.
Michael spends at least nine hours locked in one position all night. His preferred position is on his back, with the hospital bed slightly raised at the head and at the knees. Movement is impossible once his last dose of Parkinson's medication has worn off, usually long before midnight, so there he must stay. Lying on his side is less comfortable but it also poses problems with the diaper he must wear every night. Michael is completely incontinent now, at least he is through the night, so lying on his side leads to far more leakage onto the bed, far more discomfort by morning. I have a collection of large square cotton bed pads; one covers his bed sheet every night and takes most of the excess moisture that the ultra-absorbent adult diapers do not retain. These pads are gortex-lined on the bottom, rendering them impermeable. There is always laundry every morning but at least with these pads, usually the rest of the bedding is left dry. Occasionally there is a deluge.
Back to the bedsores. For now, I won't try to change his position at night, but during the day I will try to keep him off his backside as much as possible. This will mean that when he wants to recline to watch television, I will try to have him on his side, not his back, and try to get him up moving more often throughout the day. Anything that will take the pressure off that spot. Friends have recommended a mixture of aloe vera and vitamin E which I will try if this first approach is unsuccessful. This morning I placed a memory foam overlay I had lying around onto his mattress, hoping that will relieve some of the pressure. I will also consider waking up once in the night to turn him if necessary but that will be a last resort only. Sleep is too valuable at the moment for both of us.
If someone had asked me ten years ago if I could ever deal with my husband in diapers, I most probably would have said no, but it is remarkable what you can get used to. It doesn't bother me but it is probably the most significant factor in my distancing myself from my husband physically. Our relationship has become one of simple affection.
My biggest concern with the diapers was not the aversion factor but the environmental one. For all four of my children I was dedicated to the use of cloth diapers exclusively. On the rare occasion I used a disposable one for travelling, I felt that I, personally, was responsible for all environmental disaster. In fact, for short trips, I was known to carry along lots of plastic bags to store the rinsed out soiled diapers until I could return home to wash them. A bit extreme, I know. It wasn't just the use of an unrecyclable paper product that bothered me but also the disposal of human waste that should have gone into a sewer but was ending up in a landfill, despite every effort I made to remove solid matter.
But with an incontinent adult, using cloth diapers is really not an option. With my children, their use arguably hastened toilet training (anything to get out of those soggy, heavy messes); with an adult, comfort is the most important consideration, and the amount of cloth that must be used to stem the flow of an incontinent adult male would be more than uncomfortable. The one consolation is that the technology has advanced to the point where thinner and thinner diapers are holding more and more fluid. The same can be said for infant diapers too, so I suppose the impact on the environment has been diminished somewhat. I still shudder at the thought of all that human waste being dumped into landfills, though. Surely we have advanced further than that as a society. It seems ironic to me that we have perhaps the most advanced plumbing systems we've ever seen and are so preoccupied with hygiene and the spread of disease, especially in public washrooms, yet we are so cavalier about our disposal of that kind of waste that has the unfathomable potential to spread disease into our soil and water systems. But I'll get off my high horse now.
As this disease marches on, indeed as any of us progress toward our earthly end, I am struck by the circle of life, how much my husband has returned to a childlike state: diapers, unstable gait, inability to articulate his needs, teeth falling out, an inability to dress himself, a complete childlike egocentricity where his needs are paramount. I saw it with my parents and my father-in-law, and my niece probably saw it in my sister in the months before her death. It is a sobering inevitability for most of us.
Methinks Shakespeare said it more eloquently than I: