Does anybody have ideas on how to ease my extended family's anxiety about my two son's central-line port care and use during home infusions?
Both my sons have central line ports placed for home infusions and long hospital admissions. I am completely comfortable with the care needed to keep them working safely etc. The attending physicians make sure I get regular refresher courses to handle accessing them, changing lines and even administering some infusions depending on what's ordered. In our state Medicaid does not always pay for nursing to come in for every infusion. Only bring the medications and inspect the ports once every 4-7 day. Unless there are risky medications being given, that is the standard process.
I would prefer nurses do it but its either continue managing it alone at home or be stuck at the hospital even more than we are now. It's easier at home, less risk for infection. Too many MRSA infections have come home. So staying out of the hospital is better when safe and possible.
However, no matter how many times I explain it to family, forward them the education information nurse educators and doctors share, they still hasel me saying I should just let the professionals do it, its to dangerous. It's not like I want to do it, I am forced to do it.
I get frustrated because I offer for them to come into town and be present during the refresher trainings. Offer them to watch nurses do it, heck asked them to visit for one damn time during hospital stays.
No matter the approach it keeps coming up. If only they would take the time to speak with such "professionals" they might get the entire situation.
Has anyone else dealt with this type of struggle. I realize some people can't be reasoned with or pleased. But I also know it's fear that is fueling this, or at least I thought so. What am I missing here? I figure someone else could tell them better than me, but geez, they won't listen.
Ideas? Suggestions? I don't want to get to the place of being bitter and angry or darn near hostile. Its hard enough doing this alone without support anywhere, and harder with the chatter of others doubts. I would be understanding if an emergency or medical error had ever happened. But there has never been any problems I worry fatigue might cause one, but so far, no concerns.
I guess I just have to let it go, ignore my phone, and keep sending links to educational info. Sigh, I give up!
Stop trying to explain this procedure to people whose minds are set on another direction. It’s a fruitless endeavor. I’m sending prayers up for your boys’ health and well-being. And hugs aplenty for you.
Why is it so much work to manage the "rules of engagment" too. Its soooooo tiresome.
I also realized after reading responses that there actually was a pattern after all. Family tend to call on weekends, and late evening. Times when they must have downtime enough to meddle. To realize people just sit around assuming there is a better way without ever doing the work is infuriating.
Next time they push the issues I will tell them to start a GoFundMe and raise money for a nurse to do all the infusions, or Shut up. Wonder if when faced with an actual solution will they chirp different tunes. Thanks for the support. Good suggestions to pass along too.
Generally speaking, many people are not comfortable when forced into a nursing situation. I’m one of them, although I’ve done and continue to do my share of family and even extended family nursing chores. It has nothing to do with fear.
I think if you have done all that you mentioned to recruit them, you need to back off. If they wanted to do it, they would have by now and may actually resent your prodding. Your energy is too valuable to waste.
I have a cousin whose husband has had recurring MRSA infections and she does the infusion treatments at home for him. No biggy in the scheme of things, I get that.
Especially after 15 years I’m sure you have it down.
As you said, your caregiving situation is similar to that of other caregivers. Caregiving is often lonely and requires great fortitude. You will find many threads on here about family members who don’t visit, who don’t share in the chores, some even come in and complain about the ways the hands on caretakers are managing things. Then fly away back to their own lives.
Some feel the caretaker has chosen to take on this care and resent the caretaker for trying to press them into the same unhappy situation.
Some feel their loved ones would be better off in a facility where they would get more care.
Often there are threads where widows feel left out after their spouse dies or abandoned after the spouse receives a diagnosis of cancer or Alzheimer’s or some other life changing condition. Then there are the folks whose friends shunned them after they allowed a parent move in for care-taking. Not everyone can relate to your journey.
There is a book your situation reminded me of. If you haven’t read it, you might find it inspiring.
“Far From the Tree: Parents, Children, and the Search for Identity” by Andrew Solomon.
You are right. I relate to much of what I read here on AgingCare so far. It hurts to have people abandon you, and to abandon children stumps me. Regardless of who gets left behind its painful.
I divorced shortly after my oldest suffered his brain injury, and I was still in and out of wheelchair. The trauma the kids and I suffered in the car wreck was all a self indulged abusive husband needed to take off and excuse himself from any responsibility. So if a father can do that, other people will walk away too.
In truth it was a blessing. But I do have to keep in mind many people are so uncomfortable with the circumstances they shun us, or they don't want to feel obligated to help and staying away ensures they can remain unattached. Thankfully I am slowly building a community of support and finding opportunity to advocate locally for families. Its been a turning point. But I am determined to keep learning and listening so I can be better, do better and make the best choices.
Can't wait to read the book.
Don't answer your phone, let it go to VM then delete. You really owe no one an explanation. The boys doctors must think your doing OK. They see a nurse every few days. Believe me, if u weren't doing something right they would tell you.
Could it be family thinks because of your disability you aren't able to do what you do? That there is some concern here or do you see it as controlling, which maybe right. Tell them that u know they mean well (even if they don't) and that you have chosen to care for your sons because you want to. That their constant berating you is becoming stressful and you don't need that.
As far as family, I had wondered what the resentment was for. Its stupid to resent the person doing the work. But it is the same process humans do to each other when blaming a victim for them having suffered a crime.
But what I think I was missing was how they were baiting me into those conversations. I never bring it up directly, but I have had to end a phone call because it was time for an infusion etc. So I will need to be more self-aware to not say those things. Its not intentional, its a tired, "gotta go do..." type comment. But you are correct, I need to avoid the subject somehow.
Part of me hates the emotional work that requires. Remember not to say this, but be sure to say that...its easy to lose track of the "rules" of interacting with unsupportive family. But its either figure that piece out or ensure the constant complaining they do.
Bottom line is its easier for them to finger point than lift a finger to help. Thanks for the insight. I really would have not caught onto how the conversation keeps coming up so often. Geez, caregiving just sucks sometimes, even though I love my boys. Some days they are not the ones that tire me out. Its everyone else that does.
Im very sorry. After reading JoAnns post I had to reread yours. I thought you were upset because you couldn’t get them to help you give infusion treatments. And here they are fussing at you for doing what you need to do.
i apologize and agree with you that it’s easier, safer to give them at home. But really, just stop mentioning it to them at all.
I have no idea how I misread your post the way I did.
I was amazed and a little appalled at the quickness in which my "support network" disappeared once Dh had something "scary" looking like the central port. Explaining to them didn't help and I gave up. It was what it was.
You are doing amazing things, and with your own disabilities too. One thing I am sure of is that it's NOT you, it's the situation. Many people find ANYTHING medical to be just too much to handle. We're used to it, we've seen it day in and out, so the "scare" is no longer there.
Just keep on being amazing and don't let the sideliners make you crazy. It's sad that you do not have the support you need---I learned that the hard way.
Luckily, my DH recovered fully, but there was always that chance that a port would have been "permanent".
You need a hug--so, here's one...
{{{HUGS}}}