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    • Maya Stiles Parsons Spier

      Columnist, Editor-in-Chief
    • May 9, 2016 in Columnists

    A little etiquette lesson for caretakers and those for whom they care

    Caregiving often calls us to lean into love we didn’t know possible.
    Tia Walker, The Inspired Caregiver: Finding Joy While Caring for Those You Love

    Recently, mostly due to miserable happenstance and a stubborn, willfull hubby who refused to listen to his wife who certifiably knows everything, I’ve become a caretaker. Mind you, not on the level of many caretakers whose lives are devoured by caring for another, but I guarantee you that, after an epic year of difficulties, my hope of relief was crushed by an even more enormous stress being laid on my shoulders.

    You remember the song “I Left My Heart In San Francisco?” Well, my husband left his right big toe in northern Thailand.

    I got a call after ten long days – far longer than he usually waits – to tell me that he had been diagnosed with necrotizing fasciitis (flesh eating bacteria) and the doctor was literally in the room waiting for his decision about amputating the toe.

    “When you get off the phone,” I told him, “you tell the doctor you will go have that toe amputated now, because while you’re dithering, you’re losing your foot, your leg or your life. Tell him you want headphones because it’s gonna sound gnarly.”

    Fast forward 5 months of me asking how the foot was and getting the standard, testetosterone-poisoned response of “it’s fine,”and now he’s getting off the plane, as always (he travels six months every year), a little thinner, a little older, but still my Darryl, my love and annoyance of 30 years.

    A few hours later and I was unwrapping the foot to do wound care. Trust me, you are happier I’m sparing you the details (and including no pictures) than you even know.

    FYI – husbands come under the aegis of Mother Bear just like children do. She literally erupted through my skin as I pinned him with a glare and snarled “Number one – if you ever do anything like this again and do not come home when I tell you to for proper care, I will get on a plane – and you know how I feel about that – and I will frog march you home, kicking and screaming if necessary. And number two – we are going to Urgent Care tomorrow with no whining out of you!”

    Hubby appropriately cowed but trying not to show it, off we went to our HMO’s equivalent of an ER. The brisk veteran nurse took one look and suddenly, her voice went from brusque to gentle. This is Not A Good Sign.

    X-rays showed a bone infection (osteomyelitis) but tests showed the flesh itself was okay – a testimony to the daily cleanings he made sure he got in Thailand – half a brownie point for the boy.

    And thus it began – a PICC line for antibiotics. Multiple trips for appointments for wound care, to get the PICC line rebandaged. A cast to seal off the foot that was so slippery he was in danger of falling with every step. A trip to get a walker and a pee bottle that won’t spill. Making him food so he wouldn’t have to risk our 11” stairs (we live in a huge old monster of a farmhouse). Working my 10 hour work days that sometimes stretched to 12 hours or more as I made up time spent ferrying him to appointments. Shifting my schedule all over the map and giving thanks to my amazing coworkers, boss and manager who told me unequivocally that family comes first, that they had my back and to do what I had to. Making sure I came home in time to do the PICC line antibiotics. Getting up extra early to get him up and into the boot that replaced the cast and more wound care. Wound care. Dear freaking mercy.

    Of course he was cranky. Riddled with toxins from the infection, informed he had to obey his diabetes rather than ignore it and scared – he responded like a whole lot of men I know. It felt like fear – it came out like irritation and anger and a determination to do everything the way he always had regardless of consequence.

    But here I was with 20 deaths in 17 months, a major surgery of my own and even the good stressors of the year (new granddaughter! Successful adoption search on my bio father’s side!) were intense. Since he was gone for most of it, it was all academic – even theoretical – to him. It was not real at all that this was being piled on a compile burnout case.

    I had nothing left.

    I married the man. I signed up for this, although he’s been informed he doesn’t get to burn my dreams on the pyre of his poor decisions. Life happenstance – well, it works like that. Him being stupid – no.

    Truth is, this is a tremendously diffic ult situation that happens constantly as we age but doesn’t necessarily wait that long, either. Both parties are engaged in a lurching dance of survival and they can make it harder or they can be each other’s support – it’s up to them.

    In aid of that, given my experience as a Certified Nursing Assistant, having helped him through a previous health crisis and this one, here are some etiquette lessons for both the caretakers and those for whom they care:

    For the patient:

    The person taking care of  you is sacrificing a huge part of their own life to take care of you. They are missing countless opportunities, perhaps shifting work schedules, perhaps working some very long hours to make sure you get what you need (I have averaged 20 hour days lately). You get to appreciate this. It’s no small thing and, thanks to assisted living facilities and nursing homes, it’s something they don’t actually have to do. Most of the time, they’re doing it for love.

    So – let them know this matters. Let them know you understand what they’ve sacrificed and that it means a lot to you. Do this often. Even just a “thank you” counts tremendously. “Please” also counts, too, just like when we were kids.

    Do as much for yourself as you safely can. If you can make your own bed, do so. If you can empty your own urinal, do that, too. Can you make your own meals? Do that and if you can manage it, do your own dishes. If you can’t, your caretaker gets it, but remember everything  you refuse to do but could is another thing heaped on the enormous workload your caretaker is carrying. But don’t do more than you can and get a setback that will mean you need even more care. Thinking in the long term is good.

    Expect your caretaker to need to take a break and encourage it. If your caretaker doesn’t fill the well from which the giving comes, it will empty and giving on empty is a bitter place to be. If you can, arrange for your own respite care. Your caretaker will be delighted by your kind consideration and feel even more appreciated.

    For the caretaker:

    You’ve undertaken an enormous task, usually out of love, and that makes you an amazing person. Be aware, though, that sometimes you will be angry – I was angry with my husband because much of his situation was his own doing but many of the consequences were dumped on me undeservedly.

    That anger is reasonable, but remember that, whether it was a life happenstance or the consequences of their own foolishness or neglect, they’re in a terrible place. Generally, if people are in need of care, they’re up against a wall, probably scared and depressed and they wouldn’t be in this situation if they could help it.

    So – when you’re ready to throw that bedpan through the window, take a deep breath. Walk into the next room if you can safely leave them and try to remember that much of their behavior is due to the dire straits in which they find themselves. It’s valid to refuse to tolerate abuse, but if they just sound frustrated and cranky, try to make that refusal to tolerate it as gentle as you can and acknowledge you understand where it’s coming from even as you refuse to put up with it. It kind of works like magic in most circumstances. After all, how would you feel if the positions were reversed?

    And do, please please please, get as much respite as you possibly can. If there are community resources, call on them. If you can get some in-home care once or twice a week, get it. Take a few hours here and there to do what you want to do. Take a weekend and get another family member to step in for you, if possible. Take a week or so and if your person needs to spend some time in care, well, the renewed caretaker they get in return will be worth it.

    This situation is one likely to happen to all of us. We will be in one of those positions or the other. It an be an endless stretch of horror, or it can be challenging but also an experience of tender love that keeps both of you afloat. It’s all in how you do it.

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