What's wrong with settting conditions for being primary caregiver?

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I've cared for numerous family members, either as a primary caregiver or being heavily involved in caring for loved ones over the years. I've done everything from caring for a terminally ill parent, as well as my beloved grandmother who was disabled by a stroke. I've cared for my father-in-law, mother-in-law, and other in-laws who were elderly and living alone and/or living with me and my spouse for periods of time. I've planned funeral after funeral, planned and hosted family and friends at my home after saying goodbye to loved ones.

I do not regret helping loved ones, but I do think there's got to be a point where it all becomes too much. We learn of another loved one's illness and family members turn to you because you've done this so many times in the past, as though you're just expected to fulfill that role again.

Most recently, I was primary caregiver for my mom for 2 years and got quite ill. She had not been diagnosed with dementia, though I tried for years to snap my brother out of denial so he could help me get her to the doctor. When she was finally diagnosed with dementia, she was released to me since my home was organized, in a nearby state, and my family more or less felt my lifestyle was best suited for managing my mom's day to day care.

At the time of her diagnosis, I believe I should've had a discussion with my family about how we'd all play roles in caring for her, but this conversation never happened. And so, when my mother was in her worst mood-swing state, she came home with me and my husband. She was violent at times, threatened me with a knife, chased CNAs out of the house, would not bath unless I worked for hours to get her into the shower, and much, much more. With the help of a number of doctors, we finally got her stabilized.

That said, my body finally broke down and I developed symptoms my physician was so concerned about he demanded I make other arrangements for my mother's care. It took a very long time to recover physically from the medical diagnosis and it was during my recovery that I asked myself, "Could it be that I've done this [caregiving] too much throughout my life. If so, how do I draw a line, how do I pull back when illness in the family and end of life issues arise again and I'm called upon once again? Can I really ever say, 'No, I can't do this anymore."?

I think we have to create conditions before taking on the caregving role. We have to say what we are comfortable with, and not comfortable with; what we can and can not do; how long we can be caregivers without risking our own health and well being; we have to identify what we need to provide care; and let family members know that everyone has to find a way to contribute for care.

I finally did this. I finally set conditions and guess what? I've been cut off by my family for doing so.

3 Comments

Wow, Dena26 ... a fascinating topic. I'm SO sorry this happened to you, but kudos for coming to terms with the fact that you had to draw a line. I haven't quite figured out how to do this in my life yet ... partly because, like many of us who feel thrust into this role, I know that my backing away will not somehow compel resistant and less-willing family members to suck it up and step into the vacuum to help. There will just be a vacuum.

You're absolutely right ... the best and absolute time to have these conversations and set these expectations is right at the beginning. I think a lot of people go into crisis-management mode, where everyone's on an adrenaline high -- where will Mom go after the hospital? How will we get Dad to agree to move out of his house and into Big Sis's place in the city? -- and so on ... and the really important, long-term impact on the life (and finances and sanity) of the primary caregiver (and his/her family) is not understood or discussed, and no steps are taken or agreements made about how this burden will be shared by everyone. By the time reality has really settled in for the primary, sometimes it seems that everyone else has kind of "moved on" ... for them, there's no longer a crisis ... it's no longer an urgent problem.

I can't see anything wrong with making it clear from the outset to siblings and other involved family members under exactly what conditions you are willing to take on the responsibilities of primary caretaker for a loved one in the family ... and also that in the absence of these conditions, you will not be able to continue. Such conditions should include involvement (financial, time, etc.) by other family members ... but they may also include matters involving your own health and finances that are not predictable and not within your control. In addition to setting these expectations in the beginning, it's a good time for everyone to agree on one or more "fall-back" plans for if/when the current arrangement becomes unsustainable.
Dena, I liked your post, and you've brought up very valid points and I agree with you.

You asked:

how do I pull back when illness in the family and end of life issues arise again and I'm called upon once again?

I say that you call upon the fact of your OWN illness, and make it clear that you are no longer available. Door is shut. Nobody home. Let other's handle things for awhile.

And who lied and said you needed anyone's permission to say no, no matter what the reason, or just because you damn well don't feel like it?

You asked:

Can I really ever say, 'No, I can't do this anymore."?

I say, um...yeah. What exactly would happen if you did say no? Would someone else's life be inconvenienced if they had to assume the burden you do? Yeah? So? What about your life? It isn't as important for YOU to be well and healthy and relaxed? Who told you that lie?

Oh, the family cut you off? Imagine that! No surprise there. Good riddance.

You're no longer available, right? Let them deal.

Can I really ever say, 'No, I can't do this anymore."?
Paula, yes, I agree too.. I think it is very important that people put their cards on the table with family members. Don't ask their permission about what you will and won't do, tell them what your conditions are and they take it or leave it.

Nobody is saying to make unreasonable or outlandish financial demands, just what's really fair, all things considered. It seems to me like there is quite a bit of resistance from family members when the issue of finances and compensation comes up... I don't understand that at all.

Look at what people are asking you to do...(while they do nothing, or very little)...the reality of it....all of it...all the work, the hours, the duties, all of what goes into a days work for an elderly parent should be considered as a whole then some kind of paycheck settled on... Why would anyone consider such a thing unreasonable or 'selfish'? Your family should be backing you up, lifting you up, and holding out a hand so you can climb up a difficult spot.... not contributing to your early demise by piling this on you without a bit of mercy, and taking for smug granted that you'll heave yourself up once again... Really? I'd be doing a slow broil by now if I were you...

Lord, you should be doing the happy dance now that they won't be calling you anymore...


If you have family that will disown you because you refuse to be their pack mule any longer, than that's not family. That's pretty sad.. But...so be it, if that's what it takes to get free..

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