Only four and a half days have passed since my wife returned home from her very long stint in the hospital (two stays) and rehabilitation facilities (two facilities). While I do not doubt for a minute the value of her time in the hospital, I think the rehabilitation facilities were worse than wastes of time. Perhaps they help many people; they did not help my wife. They greatly exacerbated her condition. Instead of seeking ways of counteracting the effects of long-term COVID-19-forced solitude, they simply isolated her and said, in effect, “we’re just following the rules; we have no responsibility for addressing the impact of what amounts to solitary confinement.” Am I bitter? You bet I am. I am more than bitter. I am enraged that facilities ostensibly dedicated to the health and well-being of people, particularly elderly people, simply shrug their shoulders and say “there’s nothing we can do.” What they lack in creativity is made up for in their abundance of incompetence, in my view.
Despite my best intentions and my belief that I can do what needs to be done, I am getting tired. It’s physical tiredness, brought on by rising every three hours during the night (a nurse told me it should be every two hours, but I just cannot do it) to monitor her and rotate her position, causing strained neck and shoulder muscles. I have no complaints about doing it, yet I know I can’t keep it up for a long time because I will become useless to my wife if I do. So, I have decided to engage a company to provide 24/7 care for at least two weeks; the company does not yet know when it can start on that schedule, but when the schedule starts, I will devote my full time to exploring options. In the interim, I will find ways to improve my wife’s comfort and to lighten my load so I can, perhaps, continue caring for her for a much longer time. Ideally, I can help her with her physical therapy exercises to the extent that she can become at least modestly independent. Though I am hopeful, I am not confident that can happen. But I will do everything I can to bring it about.
Fortunately, many people have stepped forward to offer help in the way of shopping, meal preparation, handling errands, and the like. I am extremely grateful for those people; with their assistance, my hope may well be fulfilled.
Thus far, my wife has been eating very, very little. She refuses much food, saying she gets full very quickly or that her stomach is upset. That worries me. That worry, among others, will be the subject of a conversation I will have with a nurse who will come to the house at noon today. She also has been reluctant to do her physical therapy exercises; she says she is too tired and simply wants to sleep. That, too, worries me. I wonder whether her enormous number of prescription medications might contribute to both her lack of appetite and her lethargy.
It occurs to me that my words here may seem like I am wallowing in self-pity. I am not. I simply recognize my limitations in filling my wife’s caregiving needs. That is not self-pity; it is self-knowledge. The fact that I do not have more to give bothers me, but that’s simply a fact of life. I will do everything I can, and then some, for as long as I can. I hope the respite provided by 24/7 care will enable me to develop a strategy that will lead to a positive long-term result.
Time to prepare the morning medicines.
John – speaking from plenty of experience – the level of care that your wife needs right now is really beyond the ability of just about any person our age to manage. Her care seems quite a bit like the level my mother required when she became ill with that autoimmune disorder. My brother and I were pretty hard-pressed to manage — granted, we had to take my mom for dialysis 3x a week and that was just beyond dreadful — but even without that, it was quite demanding. You have your own health issues that have limited your energy levels as well. Anyhow, it’s good that you are acknowledging the reality of the situation and that it is time to get some assistance. I also think it good that you’re writing about all of this. I don’t see it as a “poor me” kind of thing at all — more a “this is where things are at and I have to figure out a workable solution.” Also good if you could go over your wife’s meds with someone knowledgeable. Maybe she’s being overmedicated. Unfortunately, that happens a lot — especially with people who have been in care centres.
I’m hoping that the 24/7 caregivers for two weeks will help establish a routine that’s easier for both you and Janine. It really does seem that the time in rehab was not particularly helpful. Please take care there, and make sure you get the rest you need as well. I wish we lived closer so we could bring some food and support. In spirit ,my friend.