Hello again. Summer is just about here, which means the kids will be out of school, and I need to study for my licensing exam. I should also get going on that book I’m supposedly writing. More pressingly, I also need to switch out our winter clothes for summer ones, a task I started weeks ago but thus far have only succeeded in making things look messier than they usually do. Anyway, all of that is to say that after next week, I’m going to take a break from the blog for a while. I’m not quite sure how long, but if you sign up for the email version of the blog on the right hand side, you’ll be the first to know when I take my head out of the sand.
Anyway, before I go I thought I’d share with you the only thing that I’ve seen in hospice that really scares me. Next week I’ll tell you what I’ve tried to do about it.
So, what really scares me? It’s not death. It’s not dying. It’s not leaving behind those that I love, or having them leave me (though that is a very sad thought). It’s not even getting dementia, at least not in and of itself–which is something that scares almost everybody.
It’s also not getting sick or disabled, though we’re getting warmer. I’ve spent a lot of time thinking about illness, both chronic and terminal. I don’t think a chronic illness has to be the end of the world. Some of them, of course, are really difficult to live with. But I think with work, both internal and external, most of us learn to manage. Sometimes people even feel that some good comes from it. I’m not that afraid of illness or disability, per se. I should add that I fully acknowledge that any and all of the things just mentioned can be terribly hard and awful, and I certainly would prefer not to experience any of them. And if and when I do, I’m pretty sure I’m not going to have an easy time of it.
That being said, it’s more the asking/finding/getting help that scares me. And, to be honest, the idea of having to provide help, too, is worrisome. At least at this phase of my life.
And so what scares me is this: caregiving.
Pretty much every patient we have needs caregiving at some point. Now, I’ve done a little caregiving myself–after college I had a very part-time job as an unofficial nurse’s aid for a bed-bound (rather heavy-set) lovely woman. She was delightful, and much of the time was enjoyable, but getting her out of bed to use the toilet was no easy feat. I also see people providing care for people every day I work. It can be an act of love, and some people do it amazingly well. But depending on the patient and their needs, it can be very challenging. Especially if the patient is combative or very large. Then it can become almost impossible for one person to handle on their own.
Now, if you only need help for a month or two or three before you die (or get better), that’s one thing. Assuming you are not completely isolated, you will probably have some family or friends that will offer to help you out, and/or you might be able to afford to hire somebody. But say you need 24 hour care for six months. Or a year. Or ten years. What are you going to do then? Family and friends who provide hands-on care for people day after day after day for year after year become incredibly worn down. It actually takes years off of their own lives. Many of the caregivers I see don’t seem all that healthy. Many are in and out of the hospital themselves. It can be really, really hard work.
And of course, they can’t hold down a job when they’re caring for someone 24/7. Nursing homes…well, some seem to be pretty decent. But they’re not cheap. And hiring someone is also pretty expensive. Around here, a live-in caregiver (which is cheaper than hiring someone by the shift) is about $220/day. (And, BTW, sometimes they are not allowed to give medications.) Now, if you’re very wealthy, that’s not a problem. And if you are very not wealthy, and receive public aid, you can qualify to get some free caregiving (from what I’ve seen, it’s about 20 hours/week), or you can move to a nursing home that has available Medicaid beds and your care will be covered. But if you’re in the middle, well, then, cash in those savings, baby. And pray you don’t live forever.
So this is what scares me: having my husband or I become ill or disabled in a way that we need a great deal of care. It scares me on a financial basis, and it scares me on the basis of the simple nature of caregiving itself. I’ve had a chronic back condition for decades, and occasionally it will flare up to the extent that I can’t walk for a day or two. It’s relatively minor, but when it flares up, I’m pretty helpless. Not only does it hurt, but I also have to have somebody help me do everything, because I can’t move.
It is a really, really crappy feeling.
My husband is great at a lot of things, but a natural caregiver he is not. I remember being a newlywed and having to ask him to carry me to the bathroom. Not a good time. For either of us. So if I really have some sort of severe health issue, we are going to have a lot of things to work through.
To be fair, I know enough about caregiving to know that I really don’t want to do much of it myself, either. I love supporting people emotionally and logistically who are struggling with illness. I could do that forever. But the actual day-to-day, hands on care? Sure, for a day or two, maybe couple of weeks or even months, no problem. Caring for a dying loved one can be an incredible balm to the soul. You can learn so much from caring for someone else. But caring for them for more than a few months? Maybe I would feel differently if it were for a loved one who needed my help. Perhaps some other instincts would kick in.
But just looking at it now, well, I’d much rather write about it than do it.
So that is the thing that scares me: needing or providing care, and having to pay for it. Next week, I’ll write about what I’m doing to make some of that a little less likely. In the mean time, enjoy the beginning of summer. And, as always, thanks for reading!