A few weeks ago I sent my siblings, son, nephews and nieces an email requesting more help with caring for my parents. The overall response was positive and most of the above-mentioned family members have increased their assistance and presence with my parents. The brother who responded to my email by listing all of my faults as a person hasn't changed his level of assistance, nor has his daughter. I think I've let that go. I think.

I've had a few concerns about the care my father (and mother, to a certain extent) is receiving through his hospice provider. I initially decided to let it go, then an issue regarding his coumadin came up. Prior to becoming a hospice patient, my father went to his PCP's office for coumadin checks and adjustments. He received the results immediately, and if changes needed to be made to his dosage they were made immediately as well. Hospice has taken over the coumadin checks. They come to his house to draw blood, but have to take it back to their lab, run the test, report the results to his nurse who then apparently has to have the hospice doctor authorize any changes to his dosage. The last time this occurred it took about six days for my parents to be advised what his dose should be. In my opinion, that completely eliminates the purpose of instant results and dose adjustment. It also reduces the efficacy of the coumadin.

So I decided to sent my parents' hospice worker an email listing my concerns. This was over a week ago and she hasn't responded to me. My father's nurse and the social worker do their routine visits with my father on Monday, so they saw her yesterday. She advised them of the email she received from me, and because of that email she had to fill out a report describing how she resolved the issues I mentioned. My mother told me that the social worker made it abundantly clear she (the social worker) is "there for them", not me. When I asked my mother what hospice intended to do to resolve the coumadin issue, my mother proceeded to make excuses on behalf of the hospice and told me they're (hospice) doing the best they can and they (my parents) are ok with waiting for the results and dose adjustment if needed.

I guess it was at that moment I decided I can't do this anymore. I can no longer advocate for my parents because it does no good and only alienates everyone from me. Even my parents inadvertently marginalize my efforts, not only to hospice staff but my family as well. Both hospice and my brother have accused me of micromanaging and patronizing my parents. I realize now that's how my efforts are perceived and I'm just too overwhelmed to be the punching bag anymore.

My concern is this: when my dad dies, I will know I could have somehow made the process better for him and my family. I feel guilty about backing off. I know in my head and heart what my skills are and what my knowledge base is. I'm under no illusion that I can make things better, but at least I was trying to do something. Now I can no longer do that "something". Will no longer do that something. I'm also afraid I will catch the blame if something adverse happens that could have been prevented by the efforts I have decided to cancel.

It's sad for me to see this be harder on my parents than it has to be. Now I have to figure out how to not feel guilty about it.

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Hi Beth,

I agree that six days is too long for hospice to get the results of your dad's INR read and adjusted. My mom gets hers checked monthly and I get the results the same day as the test. And that's between a village nurse and my mom's doctor's practice. So two different entities have to interact together.

It sounds to me like you have unclear lines of authority in your dealings with your mom and dad and their caregivers (hospice). Do you have their Power of Attorney for healthcare? If you don't, then I would think the hospice folks are correct to want to deal directly with your dad and not you. Without the POA, you don't have the right to intervene on their behalf, even though it's the right (morally) thing to do. If your parents won't give you the POA, then you are right to back off and let them handle things.

Your moral obligation is to be there when they request it and when they agree they need it. If they don't think they need it (and you do), well you need to back off...unless they're both incompetent. That's a whole different thing.

I know it's hard. I had a friend with kidney cancer and he and his partner were making decisions that were (in my opinion) bad for his health. But the decisions weren't mine to make. I couldn't run their lives and had to eventually accept that. It was hard, hard, hard for me. I used to sing the opening bars to 'If I ruled the world"...and sadly laugh to myself. He passed away and I know I did what I could.

The one other comment I'd make is email is a bad way to communicate unhappiness with hospice, unless you'd already tried to talk to the providers directly. Email can be misread and cause issues, as you found out. Better to call and speak and move up the chain of command than email.

Good luck. These situations don't have wonderful outcomes whatever we do, unfortunately. You just need to make sure you're OK with you and you can help your folks in the way that is best for all of you.

Thanks for the comments. It's good to hear, more difficult to assimilate and take to heart.

I'm honored to be able to care for my parents but there's only so much I can do. I live two hours away from them, whereas my defensive brother and his 31 year old daughter live five minutes away from them. My brother mows their lawn. My niece cuts my father's hair. That's it. That's all they do for them. Five minutes away.

Haha-cap'n you beat me to it! ;0)

no mishka, one of em didnt turn me down, stfu. lol..

from the heart here, proactive is great, argumentive not so much.
now for hospice's ass rippin. ive never seen such a bunch of condescending, slacker, know it all, tell nothing , profiteering, bunch of control freaks in my life.. my experience with southern care has been horrible. they are not supporting me, they are tongue in cheek exercising their sexist prejudices. it aint workin. we have a good doc who just sneers holes thru them..

Beth, it sounds like your proactive stance is not being appreciated by anyone. I agree with you that you have "had enough."
Tell your family this and then stick to it. Somehow you seem to feel an inordinate responsibility to be in charge, but no one else wants you to. Take care of yourself first and ask yourself why this may be so?
I understand the position, as I believe I took that responsibility in my own family. It was because everyone was "under" responding and things were not being taken care of. Eventually, dynamics balance out, you will have figured out your motivation, and someone will ask you for further help, or one of your siblings will take over.
Whatever happens, the weight of the world, and even your family, is NOT your sole burden. Try to relax for your own benefit, Dear One:) xo

Hi Beth, sounds like you have had a really rough time lately. (((hugs)))) .

Maybe you just need a break. Maybe don't make the decision to completely be done but just take a much needed rest --and let Mr. Know It All Brother take the wheel and see how he drives the caregiving car for awhile.
Good luck and blessing to you!!!!

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