My biggest fear, part 2: What I’m trying to do about it

Hello again.  Last week I revealed my biggest fear (related to the work I do in hospice.  I won’t get into all of my other deeply seated fears.  I’d need a couch for that.).  As you may remember, it turned out to be caregiving:  needing it and receiving it.  And, last week, I promised that this week I’d tell you what I’m trying to do to minimize the chances that my fears will become realized.  So, here goes:

First, I do what I can to try to make sure I don’t need care in the first place.  Indeed, the only consistent piece of advice I’ve ever heard from anyone who works in the health field is this:

Don’t get sick.

I’m not really sure how to do that, but as my main issue is the chronic back pain I mentioned last week, I’ve become pretty focused (some might say obsessive) on that.  I spent a lot of time (and some money) going to see various doctors, physical therapists, witch doctors (not quite, but close), etc.  I learned three things from that adventure: 1)my problem was inflammatory in nature, 2) doctors don’t know everything, and 3) no one is going to care as much about your health as you do (or at least as much as you should); i.e., you probably want to take charge of your own health.  After deciding not to go on some heavy duty meds a couple of the MD’s wanted to put me on (one side effect: leukemia), I did a bunch of research, drastically altered my diet, started taking way too many vitamins, and reluctantly started exercising.  It’s been a couple of years, and in general I’m doing much better.  It’s been great to be in less pain.  My body (and mind) are functioning better than they have in decades.  So that’s all good.

But my main motivation behind all of it was to not be an invalid.

I don’t know if it will work, but it’s all I can think of to do, so I’m doing it.

Of course, there’s no guarantee that it will.  And even if my back pain doesn’t get out of control, let’s face it: something else is probably going to get me, at some point.

So, then what?  What happens if–or, more likely–when I do need care?

Well, looking around at my patients, almost all of whom do need care, there seem to be two factors that I can control that determine how easy or difficult it is to care for them:  their size and their personality.

Really large, heavy people face a lot of challenges in life, and it doesn’t get better when they’re sick.   And actually, it doesn’t really get better when they die, either.  One of the worst things I’ve seen in hospice was funeral home workers attempting to get an obese body down a narrow flight of stairs.  Anyway, more on point, if you are very large, and can’t move on your own, it helps to be very rich, because you are probably going to need a few people to help move you about.

I know that size isn’t under every one’s control, but at the moment it is under my control.  So, I try to remember that when I start digging into the chocolate.

As for personality:  it’s a lot easier to care for somebody who is really nice to be around. People who are viewed as incredibly kind often have an excess of people gathered around them, trying to help out.  Not always, of course.  But it’s a lot more likely.  Lately I seem to have a number of families in which the patient is an extremely difficult person to like.  The family members do their best to care for them, but eventually they just can’t take it any more.  And that’s when I have to start calling nursing homes.  And it’s probably no surprise to hear that nursing home employees have favorite (and not-favorite) patients, too.  In fact, occasionally hospice workers do, too.   We treat all of our patients well.  But we’re only human–we dole out our love, too.

So, I do try to be pretty nice to my loved ones.  I don’t always succeed.  I did just start listening to You’re Wearing That? Understanding Mothers and Daughters in Conversation By Barbara Tannen.  It induced me to make a conscious effort to do what I can to have a good relationship with each of my daughters as they grow older.  There’s no guarantee that I’ll succeed on that front, either, but it would be really great if I did.  It would be wonderful to get along well with my daughters for all the joy that it would bring to our lives.  Plus…well, there’s a good chance I might be asking them to change my bedpan at some point.

I’m not counting on that, though.  Not only would I rather not have my children have to give up their lives to care for me, but at the moment, they’re not old enough to cross our street by themselves.  And so, for my 40th birthday I asked for–yep, you guessed it–a long term care policy.  Actually, it’s a life insurance policy with a long-term care rider.  We do sometimes get patients with the typical long term care policy, and in general, they end up being useless, at least in the hospice population.  They often don’t kick in for 90 days, which a lot of hospice patients don’t have.  And there seem to be a lot of things they don’t cover.  There’s also no guarantee that that company will even be around when you need it, after you’ve paid into it for 20 years.  And if you don’t use it, well, there goes 20 years worth of premiums.  Of course, I’m sure some of them are quite good.  I’m happy with the policy I got (or at least getting.  I’m still paying for it.  It’s not cheap.), and it has laid to rest half of my fears about caregiving, in that I know I’ll have the care I need if/when I need it.  At least for a few years.

My parents, who are fortunate to be in good health, also have it, or something similar.  They share my deep fear about caregiving.

The thing is, my husband didn’t sign up for it.  So there’s that.

I haven’t figured out how to address the other half of my fear: providing care.  I’m sure I’ll have to provide at least some, unless I end up needing it first.  And while it does scare me, I have seen some–actually, many–people do it with such love that it looks to be a thing of beauty.  I don’t know if I’m up to the task or not, and of course, a lot of it will depend on what the task actually is.  Caring for a sweet 85 lb semi-mobile grandmother is one thing.  Caring for a 250 lb person who has dementia “with behavioral disturbances” (as we euphemistically put it) is something else. So, like most things in life, I guess I’ll just have to see how it goes.

Anyway, that’s it for me for now.  As I mentioned last week, I’m going to take some time off.  I hope that you have a wonderful beginning of summer, and if you’d like to know when I’ve re-emerged, sign up for the email alerts on the right hand side.

And, as always, thanks for reading.