As a pair of sisters who are six years into the long goodbye with our parents, we have lived much of the spectrum of elder care.
Our dad suffered an excruciating three-year bout with dementia, while our mom, nearly broken from her experience with Dad, developed kidney failure soon after he passed away and is in the final stages of her life.
When we began this journey, both of us lived in cities distant from our parents. After our mom became ill, Diane and her husband moved back to our hometown, while Sue and her husband continued to support remotely. We have had a crash course in long-distance and in-town care, assisted living vs. aging at home, supporting a parent who is losing her best friend, and moving from active medical care to hospice placement.
Like most siblings helping their families manage long-term illness, our lives are a mix of treasured final moments, deep sisterly love and frustration when we fail to communicate and understand each other, tempered by the shared moments of unique humor solely reserved for siblings.
One of the biggest lessons we’ve learned is that — to borrow an often used but so appropriate saying — it takes a village to care for an aging parent. Neither of us alone, or even together, can do all that needs to be done for our parents. Whether the support is asked for or offered, whether it’s from inside the family or out, we know now that there are myths and facts about elder care, and we’d like to share some of those.
Myth #1: If one of us lives in town, we’re covered.
When we started this journey, we took turns traveling from out of state to visit our parents each month. As conditions degenerated, each visit ended with a detailed airport phone call from the visiting sister to the other, relating progress made, new problems, and things left undone that needed to be addressed next time or in the interim.
Diane’s move back home gave us the security of steady local help and oversight and threw us into a new dynamic. After years of commiserating with friends who were the local eldercare providers with remote siblings, we were all too aware of the potential pitfalls and sources of resentment. How much is too much to put on the local sib? How can we equally share the burden when only one of us can run over anytime something happens? What’s the best way to be an active and supportive remote sib?
From talking with friends and through our own trial and error, we learned a few things:
- Most local sibs tell us, and we agree, that remotes can help most by calling their parents and the local sibs. Be an active part of decisions. Show up for telehealth appointments. Be a sounding board.
- Coming for visits is great when possible. While Sue supports Diane continually from afar, her visits provide Diane some respite, allow Sue to see first-hand what they are dealing with, and give Sue some opportunities to personally fix a few problems.
- The remote sib needs to ask the local sib what they need. If the answer is vague, suggest a few options – take the lead on a problem that can be solved remotely, call the parents and text the local sib with an update so that they don’t have to call, send a certificate to a favorite restaurant to the local sib and thank them for their hard work.
Myth #2: A spouse is either all in or all out.
Whether or not we call our in-laws Mom and Dad, committing to a partner for the long term means joining a new family. While couples considering long-term commitment often establish whether parenthood is in their future, how often do they discuss plans for assisting their aging parents?
Once stepped-up care becomes a necessity, a few spouses might take the stance of “These are your parents; I have my own to worry about/I had my turn with my own parents/I’m sure my time will come.” But in our experience, many spouses find ways to assist their in-laws to a degree manageable for and suitable to them. It might be occasionally getting on the phone to say hi during the biologic offspring’s frequent calls. Or, as in Diane’s family, it might be making an international call to the in-laws, who seem perfectly content with email communication across continents, but love a surprise phone call initiated by their American daughter-in-law.
If it’s in his or her skill set, a spouse might help out by cooking a little extra for delivery to the aging parent, fixing a minor plumbing problem (is there such a thing?), checking to see if the elderly in-law needs something from the grocery store, or doing a bit of weeding or mowing.
The intangible cost of care — time — can be more complex. As parental independence deteriorates, the biologic son or daughter will have a growing need to dedicate more hours to care — whether it’s in a shared home setting, through out-of-town visits, nightly stops to get a parent settled for the evening, or frequent visits to a long-term care facility to try to connect with a fading loved one. The support and understanding of a spouse, even in the absence of direct assistance, goes a long way in helping the caregiver cope.
However the couple’s caresharing evolves, showing devotion to one another by demonstrating care for his or her family — children from earlier relationships, siblings, and aging parents — is a love language like no other. As a caregiver, understanding your spouse’s areas of comfort in terms of how s/he can help your aging parents, and appreciating whatever they can give, will strengthen everyone’s ties.
Myth #3: I can only make a difference if I’m willing to make a long-term commitment and/or spend a lot of time.
We’ve always loved the saying that “many hands make light work.”
While we have often acknowledged the incredible value of being able to lean on one another as we share this responsibility, a few extra participants have made a big difference.
Isolation among the elderly is well recognized. As limited as our mom’s social contact has become as she ages in her own home during the Covid pandemic, we contrast its relative richness with that of our father in his last couple of years of life. After moving to an assisted living facility, he received almost no visits from longtime local friends and even relatives. We were astounded; it was as if he had ceased to exist for people with whom he had had decades-long relationships.
For our mother, several people have put effort into making either regularly scheduled or random visits. Some call to check in, others bring dinner to share, and a few just stop by in the afternoon for a prearranged visit. Out-of-town relatives call for a chat occasionally, and that means the world to her.
If you are a caregiver, we hope you have some support from others in your journey. If it’s not offered, try asking. Many people don’t realize what a difference a small act can make, or they are fearful of intruding.
If you have an elderly friend, neighbor or family member, don’t hesitate to do a kindness. You are bringing joy in the moment and are not setting up expectations for repeat acts. Don’t shy away from making contact because you don’t know the person very well or you fear it will seem awkward. Don’t be reluctant to reach out to someone who is experiencing memory loss or dementia, thinking they may not remember you or benefit from the conversation. Don’t forget that people in care facilities still like to get phone calls, and, once it’s safe to do so, visits.
Don’t miss opportunities to make a difference, even for a few minutes.
Six years in, we know that our most precious resource in this endeavor is one another. We recognize that not all caregivers are fortunate enough to have a sibling, either participatory or at all. Nor is every caregiver able to move to their aging parent’s location. Many do not have a partner or spouse who can help out and provide emotional support. We are the lucky ones.
Our hope for others is that they can find some measure of help and support, no matter where it comes from.
About the Author:
Desi Driver is your go-to gal for the topics we usually keep under wraps. Risky or risqué, heart-wrenching or heartwarming, traumatic or tense, dark or daring, this anonymous outlet allows real women to share their honest stories safely and privately. Unfortunately, in today’s world, we cannot always be as open about some of the toughest topics women experience every day. But Desi can. She may be anonymous, but she is still real, fresh and inspiring.