There are two kinds of people who look out for relatives with dementia and other challenges of aging: The hands-on, often live-in caregivers who deal every day, and the concerned daughters, sons, grandchildren, and others who live farther away. Those of us in the latter group can feel a little helpless sometimes.
What’s the best way to pitch in from a distance? One of the best insights came from my amazing sister-in-law, Laura, who with my brother looks after three elders in their home, including my Dad, who has dementia (and six young kids!): “What really helps is just being acknowledged.” Not thanked, necessarily. Acknowledged. When you’re in the otherworldly and constantly-shifting trenches of life with Alzheimer’s or other kinds of elder care, it’s an immeasurable relief to know that somebody gets your unique life of stress and sacrifice, and gets it on more than an abstract level.
Here’s how to do be a truly supportive care partner from a distance:
- Check in.
Don’t wait for the call announcing a crisis requiring your help (or your cash). Touch base yourself. Initiate contact by phone, email, or IM regularly. If you live close enough, drop in routinely. And no, sticking your nose in more than once a week is probably not too often.
- Ask, “How’s it going–really?”
Adding that last word is the key. You don’t want the caregiver to revert to an autopilot “Fine.” You want to give them permission to cut loose on how it’s really going, meaning how they’re truly feeling about things. The reality may be frustrating, vexing, boring, annoying, sad, scary, imprisoning, slow…but you can bet it’s seldom just fine.
Most caregivers welcome a safe space to vent. Don’t rush in with your own complaints in response. Often the kindest, most helpful thing you can do is to listen. Sympathetic noises nice, but optional.
- Let the caregiver know you get their nitty gritty.
Few people not physically doing it can fully grasp the emotional nuances and practical puzzles of everyday eldercare. But anyone can educate herself or himself enough to appreciate the gist of it. And the insights and information you gain about Alzheimer’s, safety proofing, or whatever will help you speak the same language as the hands-on caregiver.
What’s the fastest, easiest way to get up to speed? In the May O magazine, just out, influential life coach Martha Beck says, “Your best source of information is the Internet, where you can e-mail friends and family and research everything from buying walkers to curing constipation,” she writes. “Everyone I interviewed, even technophobes, told me that the Internet was a lifeline in negotiating eldercare obligations.”
That’s the whole point of Caring.com, of course. Call me biased, but with so much data literally at your fingertips, it’s never been easier to be able to “talk the talk” in an empathetic and informed way with the caregiver who’s actually walking the walk.
- Give tangible help, too.
Your appreciation, ear, and compassion go a looooong way. Which is not to say caregiving relatives don’t also welcome other kinds of support.What you can provide from a distance: Your research time (on a particular health issue, product, or treatment, say), funding or services (housecleaning, respite care), managing finances or insurance issues, a pick-me-up gift that makes it easier to get through the week (a book, food, a day-spa visit, a custom-loaded iPod). Caution: To be useful, you’ve got to tailor those gifts to the individual; simply clearing out your re-gifting closet counts as handing over a burden—more clutter!—not a blessing. More ideas specifically on Alzheimer’s here.
- Sub when you can.
The other great way to get a feel for your family member’s pain is to live in her caregiver shoes for a day or a few. It’s also a tremendous form of tangible help, obviously. Your own life and schedule has to dictate how often doing this is practical. Be aware, though, that fragile elders change continuously; dad-sitting or mom-watching can’t be a once-every-three-years kind of thing. You’ll be most helpful if you stay abreast of current conditions.
While subbing, you may also see things–problems or solutions–that the other caregiver doesn’t, thanks to your distance. Pointing them out in a constructive way is yet another form of the unique help you can offer.
If you’re a hands-on caregiver, is there someone in your family circle who could use this list? (And what would you add to it?)
If you’re a distance-caregiver, whether you live across the country or across town, feel free to quit reading for a moment. I bet you have somebody to check in with.
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My husband is disabled with migraines 24/7. This is the way it will probably be for the rest of his life. He cannot work, he suffers from the side effects of migraines constantly and I still have to work.
Everyone is “afraid” to bother him or us. We rarely hear from anyone, just to call, except his brother who lives two states away. (We live in North Central Texas – he lives in Denver – a distance of 750+miles). His own children rarely call and he got sick before he could make friends here in Texas, so he feels very isolated. We don’t even here from family that live on the same 20 acres.
This is a lonely life. I thank you for putting into words what we feel.
Suzy
I’m glad to see these practical tips and to see caring.com here on this site. Thanks! I’ve read Carol O’Dell’s posts on that site. She also write for alzheimercaregiving.com. Thanks again.
I don’t currently live in this situation, but have in the past. My mother died of lung cancer and my father was the care-giver. Even though they lived two states away, I cleared my schedule often to visit with the both of them. I listend intently to my father and asked him to contact his local hospis agency for help. When he was doing “poorly,” I would visit often and cook lots of meals and freeze them in small portions, so he would have nutricious alternatives to what he knew how to cook. He chose not to live with any of his 4 children and eventually passed away. Prior to that, I had him tape his thoughts about his life and I interviewed him weekly. I am working on a story of his life.
A neighbor across the street became a care-giver for her mother when she was too frail to live without 24 hour supervision. I became her “listening ear.” I kept telling her that no matter how bad her thoughts were during her most frustrating times, that they were valid and not wrong. We spent many hours conversing about he frustrations. I believe that not only do care-givers need “breaks” so that they can shop and “get away,” but that they need a listening ear that does not judge. You don’t need to agree with the thoughts they are voicing, but keep telling them that their thoughts are valid and normal. My neighbor’s mother has passed away. She is both conflicted with the feelings that she had of anger sometimes and grateful that she could spend such quality time with her mother. As time has passed, we continue to talk and she is more accepting of her thoughts and feelings and is more and more grateful that she could do such a “great service” for her mother. She knows her mother much better from the years of caring for her and was happy to do a service for the mother who served her father during his illness with Alzheimer’s.
I have passed this link on to many people. Although you may not get many comments from this article, know that many will read what is here. You have provided really good information. Thank you.