A few days ago I made a list of things that would help and/or be useful to someone who is in a residential hospice. Now I’d like to look at a list for those giving care. I know that my situation was different, most people never stay longer than 2 weeks, but as you know my mother lasted 8 weeks at hospice before she died.
That was 8 weeks of me traveling down to stay with her four days out of the week (and there was one period where I was there for 9 days straight because I had spring break.)
I am forever glad that I was able to do this, but it took its toll on my body. You know when on the airplane they tell you to put your oxygen on first telling you that if you are in charge of someone, you can’t take care of them if you don’t take care of yourself – (and then every nurse repeats this story to you nearly every day at hospice?)
It’s true.
While with my mother, I sat for hours and hours and when it was time to eat, I would grab a quick lunch (which usually meant a sandwich and fries) and return to my sitting. At night I’d return to my hotel and well, you can probably figure out what I did – absolutely nothing. A day at hospice doesn’t exactly psych you up for a vigorous workout in the evening.
I gained weight (a lot) and my body turned to sludge.
This is what happens to anyone who is in the caregiving position. It doesn’t have to be hospice; it could be a kid with a broken leg. The very same principals apply. I’ve thought about this and come up with these items which would have helped or did help me during my time with my mother. I’ll be keeping this list handy for the future.
A fitbit – although I have one, during the time my mom was in hospice it wasn’t working properly. I have an Alta and if I haven’t walked at least 250 steps in one hour, it buzzes to remind me to get up. That kind of “annoyance” would have been helpful. Also if I had seen, for example, that I had only walked 1,345 (true) steps for the day, I would have added in a few extra walks somewhere.
An approach to meals – when you eat a “quick lunch” you usually don’t eat terribly healthy food. I should have complied a list of local restaurants where salads were available or where you could go to a salad bar and just get what you wanted. If there ever is a next time, I’m going to do my research.
Water – I didn’t drink enough water when I was by my mother’s side. Why would I? Water makes you pee and when the rest room is on the first floor, it takes you away from the person you are there for. So I didn’t drink water during the day. And then I didn’t drink water in the evening either (who wants to be up all night going to the bathroom) hence my body turned to sludge. I wish I had brought a large water bottle and made myself drink one refill in the morning, afternoon and evening.
Motrin P.M. – sleeping in a hotel is touch-and-go for me, sometimes Motrin P.M. is just what the doctor ordered.
Fruit – very few restaurants include fruit. I should have gone to the grocery store and gotten a few oranges, apples, and bananas. It wasn’t until the last few weeks that I was in a hotel that offered breakfast and they had *some* fruit available.
Me-time – after my mother had had lunch and she was settled, I left for an hour or two to get my lunch and do some errands. I felt guilty about this (what if she needs me) until a nurse told me that my mother always took a nap when I was gone because she didn’t want to nap when I was there. Some time away is good for everyone.
Chapstick and lotion – see the “didn’t drink water” section, boy, my lips and skin got dry.
Comfortable clothing – when you sit all day, you don’t want anything digging into you. Comfortable clothes it was.
A pocket token – Not a Catholic but I kept a St. Christopher token in my pocket to remind me that we were all on a journey. Every time I reached in my pocket, I felt the coin and was grounded.
A journal and pen – I took lots of notes and wrote down many ideas during my time with my mother. Some things I wanted to remember and some I wanted to pass on (like this list.)
Phone and charger – if you really want to feel cut off from the rest of the world, leave your phone in your car (which I did on one very important occasion) otherwise have your phone and charger with you at all times.
Book – forget a book, I thought I’d get through dozens of them and ended up not finishing one. My mind was toast. A magazine with pretty pictures worked better.
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Wendy Thomas writes about the lessons learned while raising children and chickens in New Hampshire. Contact her at [email protected]
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