@jessamyn
Hi there, my wife's progressive neuropathy began 6 years ago. I am her only caregiver. It's becoming more and more of a full time occupation. To use a runner's analogy, I am learning that this is like a marathon rather than a sprint. When you run a sprint you give as much as you can for the entire run, 100% output, as much as is possible. In a marathon you have to pace yourself, you have to keep going but DON'T put in all you have for most of the run, otherwise you won't do well and maybe won't even finish. As a full time caregiver who will likely be doing this for many years to come, I have to realize, that just like in a marathon, I have to pace myself. Which means:

1) don't get down on myself if I don't have full blown empathy at all times and in all situations

2) being there is what is the most important thing, regardless of whether or not I am putting out 100% all the time, which I can't

3) making sure that all the REQUIRED needs are being met always, addressing the extra needs are gravy, which I DO want to provide but need to realize I might not ALWAYS be able to

4) I will have failures (like losing my patience) and the only thing to do is learn from the failures and move on, just don't beat myself up too much, and hopefully I will do better next time

To generalize, the bottom line with all of these is to be kind to oneself, just as much as being kind to one's loved one; we are human and can't expect to be superhuman, we just need to do the best we can. A lot of the love that we have for our loved ones is evidenced by the fact that we are there for them. When our loved one comes to know this, it is a tremendous comfort for them, even in times that are stressful, having that confidence that the caregiver will always be there gives them a tremendous positive lift or benefit.

This is my own set of feelings about this from my limited experience so far. Kindness, to yourself as much as to your loved one, is first and foremost the most important element in caregiving.

Best, Hank

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