Dear Family Advisor
Long Distance Caregiving
Last updated: Oct 10, 2009
How can I get my sister to help care for Mom? I'm the oldest and single, and I became the main caregiver since both folks were hospitalized at the same time about five years ago. I coordinate home healthcare, bookkeeping, medicines, nurse visits, home repairs, pet care, and so on. But I live 800 miles away. Since Dad died last year, I've been flying there every month. Luckily, Mom has someone come in to help her every day.
My sister, meanwhile, lives 30 minutes from our parents. She works full-time in a nursing home as an aide. She's poor and has two kids. Her husband has had a lot of problems, and she supports them all. I used to help them with money but can't anymore. She visits my mom maybe once a month. I've gone broke helping my folks, flying back and forth, and missing work. My mom now has to pay for my travel expenses, but she doesn't have that much money. Still, today Mom bought my sister a new car so her grandkids will be safe. I guess that's why I'm writing. This situation is sick.
Don't let sibling fights distract you from the bigger issue: how to manage your mom's care and care for yourself at the same time. Sadly, sometimes we have to act like we don't have siblings when it comes to caregiving. We don't have to hate or resent them (although it can be hard not to), but we also don't have to keep fighting with them and hoping they'll pitch in when realistically, they may never choose to participate.
If you haven't had an honest talk with your sister, it's time. It may not change the situation, but you'll feel better for sharing what you've bottled up. Tell her "Mom needs our help." (That way, it's not all about you.) Ask her what she can do on a consistent basis, if not financially then in other ways. Get her to be specific -- even one or two items a month could alleviate some of your stress.
Does your sister see this situation in a totally different way? Probably. Her life sounds far from perfect. She may have her own issues with you or with your Mom. Avoid sounding accusatory, which will only make her defensive. Encourage her to say her piece -- and really listen. Try to understand that your mom loves and needs both of you, even if you're doing most of the work.
As much as our elders want to live independently, how "independent" is it when it takes a village to keep their life going? I advocate family care, and I lived it. I pieced my mom's care together with the wonderful assistance of her church, her neighbors, and community resources -- but at a certain point, everyone was drained and my mom wasn't getting all she needed. I've seen too many families sacrifice too much because one person wants her life not to change.
Life does change, and we all have to adapt.
Most likely, you're going to continue to be your mom's primary caregiver, and being proactive about your options will help you make the responsibility more manageable.
Could your mom move in with you? How about you moving near her? I know either would disrupt your life, but it's already disrupted. If she needs this much care, then you have to do some brainstorming and consider various solutions.
Another option is a [geriatric care manager in your mother's area] (https://www.caring.com/local) -- a person who pretty much does what you're doing by overseeing the various types of care your mom needs. It's easier to have one person who can coordinate everything than to try to manage 20 people. And it might not cost more than what you're paying in transportation costs.
It may be time, or there may come a time, to consider a care home. A small group home or assisted living may be a good fit. You might not be ready for this yet, but you're certainly at a point where you need to look at all your options. If your mom's care needs were to increase, you would have already had this option researched. Quick decisions made in a crisis are seldom the best ones.
Initiating change is always the hardest. You can't let things remain as they are, because you're setting yourself up for a major burnout. You could lose your health, your relationships, and your career by allowing things to continue as is. Place your needs high on the list. Don't be surprised if you get some guff about any changes -- that may be the perfect time to share with your sister (again) how much you want and need her to be involved with mom's care. You can't force her to change, but you can kindly ask.
Encourage your mom, too, to view any changes as a new adventure. Reassure her that she'll be well cared for but that you need to care for yourself, too. In the words of Abraham Lincoln, "Folks are about as happy as they make up their minds to be." Make the best decision you can, and then find ways to feel good about what happens. Any time we take action, we feel empowered. Your mom's life and yours could both change for the better.
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