To People Who Have Friends Who Are Caregivers
You can do something.
Caregivers are all around us. Often they are the people who seem to have disappeared from our lives. They are too busy to send a text. Or to answer one. When we do see them, they are exhausted. Brittle. We just want to wrap arms around them. (And sometimes, truth told, we want to run away.)
We ask them, “What can we do?” They tell us they are getting along. “We’re fine, really.” Or they burst into tears. And still mutter about being fine.
Background
My own time of caregiving, at the age of 51, was a short year that felt very long. My spouse had a rapid form of ALS, and was ill for ten and a half months. At that pace, the illness took a turn almost every week, and it was all I could do to keep half a step behind. My three sons ranged in age from 16 to 23. My aging parents were nearby. My siblings were a five-hour drive away.
Because I was relatively young and in good shape, I thought I could handle it. And I could. In the beginning. Then it started to get away on me.
What you can do:
Consider comfort level. Some people are more comfortable than others with receiving help. If, in the past, your friend or neighbor was not comfortable with admitting need, then you can be aware of this, and be unobtrusive in how you go about helping. (And I will say to go ahead and help regardless…but mindfully.)
One of the best pieces of advice a friend did give me was never to turn down any offer of help; it took me a while to see the wisdom in these words, but I did.
Know that everyone says “Let me know what I can do.” Often, the caregiver’s mind is already on overload, and the capacity to come up with an answer is just not there. You might add a few words to say, “Text me when you come across something you know I can help with.” And then text THEM, and ask…in brief words. Or suggest a couple of things — even do the “choice theory” thing, and say, “Can I mow your lawn or bring you a pot of soup?”
Be observant
Ask yourself what you know about this person, and their needs, and the needs of the person they are taking care of. You know if they have a fish tank, and if it might need cleaning, and you are the person to do that…and you’re going to volunteer to show up every Monday afternoon and do that. (And you’re going to walk in and out of their home and do that, and not stop and chat. Or not for long. Chatting can be exhausting.)
Consider your skill-set
When my sister-in-law passed away, leaving five children, I volunteered to help them with their school essays. I knew their mother was a writer and had always done this with them, and their father couldn’t do it in the way she had, and I lived a thousand miles away…so could not be a bearer of casseroles. Sure enough, my nephew and niece ended up sending me their work, and — bonus — it became a source of connection, which was so good. Guaranteed, there is one skill you can share with someone to be useful. And honestly, to do something you can do, and are good at, and even enjoy, just makes this work better all around. I have a theory about Mother Teresa: she loved children. She loved spending her time with them. Even when her heart was broken.
The nature of respite
Options for the caregiver. Ask: can I do this for you, or would you like to do it and I’ll take care of your person?
This choice is important. There were times I needed to spend with my spouse, when it would have been good to be freed of household duties. Then, too, there were times when mindless folding of laundry would have been a break if someone else could sit with him and spend time.
You might also ask: is there something you don’t want me to do? (Maybe your friend does not feel comfortable with others handling their laundry, for instance.)
What were the most unexpected things others did for me during my time of caregiving?
A friend was aware that we’d had the downstairs bathroom gutted and enlarged to make way for a wheelchair accessible shower. She knew we needed to paint it. She asked me — so casually — what color I had in mind, and then brought over paint chips for me to look at shades. I chose a color, she picked it up, and we painted together. I would never have thought to go out and find paint chips!
Another time, I looked out my window to see that a neighbor had come over, with two friends, and all three were busy in my yard. They raked and pruned, and did all spring cleanup. They were out there for five hours, and did what I would usually do over weekends of work. They didn’t ask me; they just did. They knew I would probably say, “No, we’re fine.” Know your friend well enough to know if you are crossing some line. And know when to ignore a line. For me, there was something about knowing the out-of-doors was tidy and ready for the next season; it made it easier to go on with my indoors work. It made it easier to breathe. Tidiness and organization go a long way to mental health.
A list, to which you can add
When you live close by:
— respite care. Sometimes this is just a short stint while the caregiver is out picking up medication. Other times it might be so that they can continue to feed their passion for a hobby. My spouse’s golf foursome took turns coming to keep him company while I went to my flamenco classes that kept me sane. — yard work. Pruning, building a raised bed and hauling dirt, grass mowing, cleaning up dog poo, salting ice and shoveling snow, daily watering — groceries and food. If you become the regular person to do grocery shopping, consider creating a digital list they can just check off quickly. Do they have a freezer? Friends would actually come to my house and put things directly into the freezer. A sister-in-law organized the freezer for me. Try to have variety in what you bring. Be wary of lasagna. I am not vegetarian or vegan, but there were so many pasta/tomato sauce/meat lasagnas in my freezer that I literally ached for one with green and orange stuff in it. A fruit salad made me swoon — if there are young people in the household, consider taking them for an outing, away from the place of illness and out into the world. A movie. A favorite restaurant. A walk in the bird sanctuary. If the caregiver is spending time in the hospital, volunteer to stay with the child/children — bring over some piece of R&R. Bubble bath, a bottle of wine, some good coffee — pick up the library books they’ve ordered online, or return them — chop firewood — ask if they need you to pick up something (neighbors with a truck offered to pick up a mattress I’d purchased for the use of relatives visiting, for instance) — CLEAN! and bring over your own vacuum and supplies, so you don’t need to ask too many questions about how things work — ask if they could use a borrowed stationary bike or some other exercise equipment — take their car in for an oil change or some maintenance — take the dog for a walk
When you live far away:
— sending cards for levity or encouragement (I kept these on my kitchen counter, where I could feel them waving pompoms) — gift a visit of some local house cleaners — paperwork — taxes, disability forms (think: your expertise and their needs) — sending books or music or a workout or yoga DVD
Here again, KNOW the person you are helping. In my case, in my spouse’s last months, we had taken over the living room because he needed to sleep semi-upright in his large ALS Society chair. I could no longer do yoga with a DVD, as I thought it just horrible to remind him of the movement he had lost. So I would do yin yoga with cards that I laid out, often in the middle of the night when I could not sleep.
Be curious about their day. Think about what you know of the person’s reality, and offer accordingly.
Final word on lasagna
Remember my words about the lasagnas? One day, in the last weeks of caregiving, I opened my front door to find a foil-covered casserole dish…yes, another lasagna. But this one had a card on top, and the card shared that the giver’s mother had had ALS, too, and that the lasagna was made from her recipe. It was another pasta/tomato sauce/meat lasagna. And it tasted very good. Excellent, in fact; it was infused with love.