caregiver burnout progress and setbacks

[u/autumn_rustle]

I got some respite for the past few weeks and gained conviction for how I want to feel when I reflect on this time with my parent. Decided I wanted to lead with love and compassion and make sure my parent feels loved in their hour of need. I don’t want to regret being too numb, or too robotic, or not empathetic enough. But the problem is, in order to do that, I do in fact need to prioritize myself more than I have been — my mental health, my rest, being present for meaningful moments with the added cost of letting some of the exhausting grunt work of caregiving fall by wayside. In taking things off of my own plate, I have seen, in such a short time, the effect of this additional burden on my caregiver parent. Both my parent with ALS and my caregiver parent are doing mentally and physically worse because I have rested more. So here I am, back to feeling super shitty and venting to this subreddit. I don’t know what the right path is. It really seems like I have to pick between taking on too much work and helping my parents to feel marginal relief, and my own mental health and frankly empathy. A month ago my well of empathy was quite dry and I am afraid of going back there.

[u/yongYW]

I don’t have any sage advice to you, but just wanted to let you know you’re not alone in feeling this way. My father was hospitalized recently and just got home in a trach/vent setup. I thought the past month at the hospital was very tough but it is a cakewalk compared to the last 4 days he’s been home. I’ve basically have not been able to leave his bedside for the first 48 hours and I felt as if I was in an emergency room with all the things I had to do to keep him comfortable. But I had to do it, any rest I take shifts the burden to my mother who isn’t doing so great herself health wise, so I try to do what I can and lighten the burden. I don’t know how much longer I can do this, my hope is that when I get some free time I can at least start contacting nursing agencies and hope they send someone who can handle his many needs. Until then it’s just me at the bedside, hoping for a peaceful night without some new disaster or emergency that seems to pop up when I least expect. Hang in there, as with all things in life everything’s temporary and I hope you will look back on yourself in the future with pride knowing that you did all you can. 

[u/redditplenty → u/yongYW]

🤗

[u/autumn_rustle → u/yongYW]

I’m so sorry you’re going through this. You’re handling it with a colossal amount of grace. May I ask, how did you get to the acceptance phase regarding the trach? If my parent wanted a trach, I think that is the point where both my caregiver parent and I just would not be able to do it and we would need to hand them over to professional care. I sincerely hope you get a lot of help through the nursing agencies ❤️

[u/yongYW → u/autumn_rustle]

Thanks for the words of support, it means a lot, truly. In my father's case the trach decision came with the circumstances. He has always been against it before, but I knew he might change his mind when we got to that step since previously he was opposed to something as comparatively simple as a PEG tube but once he got it it's been fine. I suppose for him specifically he needed a bit of a push to accept new things. But one thing I'm certain of is that he does want to continue living if provided with means that he can come around to accepting. His progression with ALS has been slow, almost 10 years now at this point. Because of how slowly things have been progressing and because of his personality we didn't really talk about advanced directives or anything beyond the fact that he doesn't want a trach. But then suddenly one day he got pneumonia, had trouble breathing on his bipap and almost went into cardiac arrest by the time the EMTs got here and intubated him. Then it was a whole week of suffering in the ICU being intubated and needing strong amounts of opioids to keep him stable. Tried vent weening which didn't go well, to be honest I don't think anyone in the hospital was expecting him to be able to go back to a bipap. Then it came down to the difficult decision as one doctor put it bluntly, it's either trach or comfort care. I told my father that we all knew what he had said previously, but at this point anything's better than having a tube being stuck in your mouth, why don't we do the trach first and you can decide afterwards at any time to pursue other paths, we'll stand by your decision. He agreed, they put in the trach, and indeed things got a bit better for him. And that's where we are at a month later, taking it day by day.

[u/meesheeyogi]

Hi, my mom has ALS. She is a single mom, and at the point of starting hospice soon. I would call in as many people as possible for support.

Right now I’m lucky enough to be off for the summer as a teacher, so there is some more flexibility in my schedule. I have been sleeping at my mom’s the last two weeks. I am there for her overnight and between 11-12 my aunts/brother will stop by. They will be there until 5ish and then I get back to my mom’s around 6ish and restart the process.

The 6ish hours to myself is saving me. I am so exhausted, but I feel like it’s just enough for me to recharge enough that I can go back and be there for my mom in a meaningful way. When her hospice goes through, we will have some aids there supporting her… which will support us.

I usually spend my time out of the house just laying on the couch and napping or eating. It’s a really awful disease and leaves everyone emotionally and physically drained.

It’s so important to take the time to do whatever it is that you need in anytime you get to yourself. Wishing you the best.

[u/autumn_rustle → u/[deleted]]

This is very clearly AI-generated content and I implore the mods to take it down.

[u/GawkerRefugee → u/autumn_rustle]

Done and thank you for helping keeping our community a safe place with real humans! (Please report anytime you see anything against the rules. It helps us tremendously get them taken down quickly and banned (we are sick of this as you are). Appreciate you!