Category: Caregiving

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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.

 

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The only thing that really scares me

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!