Distance Caregiver

Care from a distance?

When Peggy Elfmann's mother was diagnosed with Alzheimer's, it was clear to her that she also wanted to take care of her and be there for her. How can this work in everyday life when almost 400 kilometers separate them? Here, she talks about her balancing act and gives tips for long-distance caregiving.

Shortly after my mom's Alzheimer's diagnosis, we came together as a family. We wanted to discuss how things might proceed, even though we had no real idea of how the dementia would progress. For my brother and me, it was clear that we wanted to be there for our mom and support our dad. But could that work from a distance? Both of us had moved away years earlier and our lives were now based elsewhere, each about 400 kilometers away. Giving up our jobs and moving back was not an option. My parents encouraged us, saying, "You shouldn't give up your lives." They didn't want to leave their home either – and so everything stayed the same.

Over the past ten years, the living situation hasn't changed much, but the care situation for my parents certainly has. The dementia has naturally progressed, and my mom needed more and more support and care. My father provides this in everyday life, and I refer to him as a caregiving relative. I struggle with this term. Because I'm not the one who helps daily with personal hygiene, dressing and undressing, and all the other tasks. But I do make a contribution.

Distance Care - What does that mean?

I am not alone in my situation. According to the 2018 Barmer Care Report, even 14 percent of primary caregivers live farther away. A study showed that about one in four supports a parent and lives at least 25 kilometers away from their parents. Experts suspect that there will be even more so-called distance caregivers in the future.

The tasks of distance caregivers differ from those of family members who provide on-site support. This is no surprise, as it's not possible to help with daily care from afar. This often results in a division of tasks. For me, it looks like this:

1. When I am with my parents, I help with the usual caregiving tasks such as washing hair, cutting nails, and assisting with meals.

2. When I am not on-site, I handle organizational tasks such as researching and applying for support services, coordinating with doctors or care services.

Always in the Balancing Act

The care situation from afar is special and often feels like a balancing act for me. It's a feeling of being torn – between my parents, my family, my job, and myself. When I'm with my children, I think I should be with my parents more often. When I'm with my parents, I think my children need me. It often feels like I'm never doing the right thing because no matter where I am, it will never be perfect.

This is probably one of the biggest challenges – and being aware of it already means a lot. The goal, as famPLUS care advisor Annika Heinze said in the podcast, is to do it well enough and to let go of one's own demands for perfection. She didn't say it's easy. And it isn't.

What helps me? Consciously setting aside time for my parents (and all the other tasks) and then committing myself to the situations. If I can do something concrete for my parents from afar, like buying a car entry aid or setting up a pedicure appointment, then I take care of it. But I try to let go of the constant "I could" or "I should." Because it only fosters a guilty conscience and feelings of guilt, and that doesn't help my parents either. On the contrary, it only takes away the joy from the moments with my children and causes a bad feeling.

And when I am with my parents, I immerse myself in the situation with them. It helps to consider what role you are in and what tasks you can take on – and where the boundaries lie. It's best to write down all these activities and realistically ask yourself: What can I accomplish? When will I make time for it?

Stay in touch and divide tasks

From a distance, you don't catch everything, and it's not always easy to assess where the problems lie or what kind of support is needed. For example, I wasn't aware for a long time of how difficult it is for my mom to go up and down stairs. Even though my dad mentioned over the phone that it's sometimes tiring, he didn't elaborate further. During one of my visits, I noticed how much trouble my mom had going up the stairs to the second floor in the evening.

From then on, it was clear that something had to happen, but what would the solution be? What options are there? How could the house be remodeled so that my parents can continue to live there? Such things can be well researched from a distance. My brother and I took these tasks off my dad's hands, just like applying for the remodeling measures with the care insurance.

The most important aspect of remote caregiving is to communicate regularly. What does the person in need of care require? How can the primary caregiver be supported? It is not always what one thinks would be a good solution. The only thing that helps is: talking to each other. And also openly discussing who in the family (or among friends or as an external supporter) can take on which tasks.

Building a Care Network

Caring is not something one can do alone in the long run. It's always good to have a network, especially for relatives who care from a distance, this is important. On the one hand, tasks can be distributed across multiple shoulders. On the other hand, there are people nearby who can be there quickly for the person in need of care in emergencies.

What do we do in an emergency?" This concern occupied me for a long time. I was afraid that my dad might have an accident and need to go to the hospital, for instance. Who would then take care of my mom? Because even if my brother or I headed out to her immediately, it would still take us a few hours. Over a year ago, we brought in a home care service—and a major reason for us was that they could be on-site immediately in an emergency. Especially for family caregivers living far away, such network partners can be a good support in potential emergencies.

The context text "Who belongs to the care network and how extensive it is varies individually, because each care situation is different. Possible partners are: doctors, nursing service, volunteers, friends, acquaintances, but neighbors can also be important helpers. Depositing a cell phone number or a spare key there can already be helpful. Good to know: For communication with doctors, nursing services, and the care fund, you need a power of attorney. It's good to take care of this early and determine who will be appointed as a contact person in the power of attorney.

Use consultation

Even for caregivers from a distance, a consultation is worthwhile. The long-term care insurance can provide information about support services and help set up an individual care plan. Some insurers offer special training or courses for caregivers, which can, of course, also be attended from afar. For my family, the services offered by regional Alzheimer's societies were and still are very helpful. They are well connected locally, can recommend services, and offer exchanges with other relatives.

And above all: Talking helps. Even with the boss. Especially in times of home office, many are open to flexible work models. Because one thing is clear: Caring from a distance rarely works in the long run, and you are also needed on site.

Peggy Elfmann, 04/25/22

FamPLUS - Competent in Daily Care.