In my post on Tuesday night I asked, essentially, why I bother with it all. Why do all this work; why provide all this care? What's the point? These questions were prompted by an outburst I might characterize as the mother of all crankiness. It was caused by a not-so-delightful combination of Cranky Reasons #9 (this freakin' disease), #6 (this shouldn't be happening) and #5 (I get scared) plus an unnumbered reason: enough already. The situation was that Skip's hands were so weak she was finding it too hard to eat her dinner salad and asked if I'd feed her.
This request prompted a cascading series of images in my mind as I imagined helping her eat becoming a part of the daily mix of caregiving tasks. If you're a caregiver, you can become accustomed to a certain level of care that you're providing, but adding new items can be a scary prospect. I reacted very badly to this new possibility.
Right now, we have a pretty good routine in terms of serving dinner to Skip and the level of support she needs that allows me to eat and enjoy my meal at the same time. If I have to feed her, then the entire routine will change and I won't be able to eat at the same time and someone's dinner will be eaten cold (most likely mine).
But, most importantly, if I'm feeding Skip, then this is one less chunk of time I can call my own that is instead given over to caregiving. This is what I most regret about the need to take on any new tasks ... I lose that much more time in my day where I determine how that time is spent.
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From the other side of the fence, I hate needing help to eat more than you can possibly imagine. I was determined that I would not go there. I WOULD NOT go there. But I'm there. I wish I could tell you it's not that bad once you get used to it. In fact, although I'm resigned to it, I can't imagine getting used to it. I hate having to ask for every bite, and sit with my mouth open like a hungry little bird. It not only consumes yet another chunk of Scarecrow's time, it disrupts what would otherwise be a relaxing and enjoyable time of day. I know it's stupid, but I feel like such a spectacle that we no longer eat out.
If you've got a good occupational therapist, there are some tools that might give Skip the help she needs. (You probably knew that, but I'm trying to come up with something positive, here.) I hope you find something that works for you guys.
I'm the one with MS, but recently my husband who is my caretaker suffered a broken hand and I had to become caretaker. Obviously, I'm not as severe as Skip or this would not have been possible, but it really put things into perspective for me. I wrote one of my haikus about it.If you'd like to read it, here's the link.
http://lapazconvos.blogspot.com/2009/10/haiku-caretaker-exchange.html
Good luck. The work you do is a high calling. It's okay if you sometimes think you fall short. The sum of your contributions is far greater than these fleeting moments.
Judy
Zoom - thanks for your note from the perspective of the person being fed. Now that you've described it, I can't imagine being in that position. Since I wrote this, Skip has been very careful to pick foods to eat that she's better able to handle, and we haven't had many issues since.
I think your suggestion concerning an OT's input is good. The local MS clinic has an OT we can meet with.
Judy - thanks for your note. It's nice to hear that my work is a high calling as sometimes it feels quite the opposite. I'll try to keep that in mind.
I realise this is way out of date now, but I'm new to your blog. Also from the other side (I need help eating some of the time, but most of the time it's manageable) ... picking the right foods and having adapted (and bent) cutlery can really, really help. There are also various aids like the neater eater (this is a UK version - I'm in the UK, but I know there are other types) and arm supports that can help not only with eating but holding toothbrush and so on to do other hand tasks at face level. They might be worth looking into, someday. I'm sure you have it well sussed, but I find non slip mats under plates/bowls and plates/bowls quite high up (like, on top of a box if at a table, or high up if on an over bed/chair table) helps - less far to get from plate-mouth, and also you can rest arms/elbows higher up for leverage.
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