Wednesday, June 12, 2013

Saying goodbye: when an aide leaves

Losing a long term caregiver, especially one who has become a friend, isn't for the weak of heart.

It sucks.

There is a bond that forms, a rhythm of give and take,  a miraculous dance of interdependence.  Even imagining that stopping is painful.  And, as it slows down in preparation for the  very last steps of the dance, each party falters, tripping, landing awkwardly.

And then there is a moment when, hopefully, a new relationship forms.   Perhaps occasionally the old dance of interdependence will appear, neither person missing a beat, its familiarity comforting.

But there is work to be done to nurture the friendship as the primary relationship.  Hard work.  Just as time consuming as when sandwiches were made, hair was brushed, and food was cut up oh so lovingly.

These memories tug at the heart even when a stronger friendship seems inevitable.

But to imagine the alternative - that the relationship never existed - or to deny its strength - is madness. That path leads to bitterness and ingratitude. It stinks of selfishness.

And yet - losing a long term caregiver can be so painful that one stares down that road a bit prior to moving on. Because saying goodbye when an aide leaves can feel as if someone has died.

Perhaps even a part of oneself.  It can be hard to muster up willingness to begin with another, to start that dance of interdependence, to even put on the music.

Necessity dictates one must, at least, make a start.


Matthew Smith said...

A friend of mine who has severe ME (which means she is mostly bed-bound) recently was walked out on by her (hitherto) best friend who had been her long-term carer. It has turned her world upside down; she can't get nearly as much care as the friend previously provided and is being threatened with a nursing home. It's pretty devastating. I'll show her this entry.

Ruth said...

My heart goes out to your friend. I'm fortunate that friends have stepped in to soften the blow, but it creates a ripple effect - I have to cut back/eliminate volunteer work, e.g. so I have additional time to train new folks, hire, etc. Turnover in aides is a huge issue for many.

take care,

Susannah Grace said...

Hi Ruth,
I'm the friend Matthew mentioned, and i'm so glad he directed me here - it really feels like you wrote about my heart here!!

I wouldnt quite say I'm being threatened with residential care ... its more that my (surprisingly rather great) social worker thinks I will be if I ask for too many more hours than I've been awarded at panel. (3 hours a day vs the much much more I was getting before everything changed) She doesnt want to put me in that position because she knows what that would mean for someone as ill as me, so she's hesitant to request more hours. I guess I understand where social services are coming from, but really, if being in that kind of environment would inevitably make someone sicker because of their particular issues, then its pointless putting them there since it would only end up taking more money from the system. Anyway...

Thsnk you so much for writing this post. I havent been well enough to even think about writing a post on my own blog yet - I'm not even sure what I could say that wouldnt just break my heart all over again at this point in time - but its comforting that someone out there not only understands but is advocating for those of us going through it. Thank you, Ruth!

Susannah Grace said...

p.s. - I'm so sorry you're going through it too!! It's good you have friends around you. It could make an awfully big difference. I'm glad to have 'met' you!!

Susannah Grace said...

Another p.s. - heh!
I just tried to add you to feedly, and it came up as feed not found. I think perhaps you might have added your normal url to the feedly gadget, rather than the rss feed url??

I might be doing something wrong as I only just found out about google reader closing (ive been mostly offline recently) and so am only just investigating feedly as an alternative... but i thought I'd let you know in case it is the wrong url, then you can fix it. :)

Where did you find the gadget for feedly? I guess having now found out about this I'll need to remove the google reader elements from my blog and change them over to feedly too. Great fun when your brain doesnt work ha! :)

Ruth said...

Hi Susannah -
Nice to meet you too. Sorry about what you're going through - it's rough. And it really does help to find out there are others so at least we can offer moral support to each other.

I'll check out the feedly issue. Thanks for the heads up about it. As for the gadget, I got it from a friend and will ask her and If I find out, will post it.

take care,

Susannah Grace said...

Moral support is good! Healthy people can sympathise, but they don't really understand... Can't, I don't think. You have to have been somewhere similar to really get it. It always amazes me how strong the online community can be! It's really amazing just to know that there are people out there understanding and caring!!

Hope your feedly issue is quick and easy to fix! :) I thought you'd want to know, as I would, if it was my blog. That would be great if you can find out where the gadget came from - I don't want to lose the rss functionality for my blog, but don't really have the ability to surf to find answers, right now. Darn google, lol! ;) I hope feed burner isn't the next thing to go! That would mean an awful lot more work to sort out!!

Ruth said...

Thanks for letting me know about feedly - sometimes it works for me and others it doesn't so when I have time I'll check it out.

Here's the link to the feedly gadget-

Have a good day!