"Doing enough": The challenge of long-distance caregiving
AS OUR SOCIETY BECOMES increasingly mobile and “global,” more and more of us are confronting the challenge of trying to take care of - or even keep track of - elderly and disabled family members living on the other side of the continent, or even on a different continent. As a matter of fact, I find myself in this situation myself, as my own mother back in the Midwest falls deeper and deeper under the shadow of Alzheimer’s. I suspect many readers here at OS will know from personal experience what I’m up against and are wondering how to proceed themselves. That is why I am presenting the following interview – which comes out of my day job as a professional writer – in the hope that it will help “let the sunshine in.”
Sandy Weiner is an American master coach based in Berlin, Germany. We recently discussed some of the issues surrounding long-distance caregiving at her office in suburban Berlin.
LOST IN BERLIN: Sandy, your interest in long-distance caregiving issues didn’t develop by chance. You’ve been dealing with many of these issues yourself.
SANDY WEINER: Yes I have, and it’s been a challenge. I live and work in Germany, but have guardianship of my 92 year-old father in southern Florida. He is suffering from dementia and he’s easily influenced by the people around him. His wife has issues with the long-term side effects of alcoholism. So their decision-making faculties are impaired, and they’re both easily influenced by outsiders. One of the main issues for my partner and me has been trying to create a safe environment for them, and achieving that from a distance is extremely difficult. Because of my situation here in Berlin, I can’t be there 100% of the time, although I did spend five months there last year.
How does your father react to having you as a guardian?
As is so frequently the case, my father looks at me as his child, not as a guardian who is doing her best to care for him as a respectful parent . He’s rebelling against me the way a teenager rebels, and he keeps saying that I’m not his parent. He doesn’t accept that there are a lot of things he can’t do for himself anymore, even when he seems to be doing okay. So there are a whole lot of problems to deal with, and the challenge comes in finding a happy medium. It’s also important to find a personal balance, and as a long-distance caregiver I have special problems to deal with, particularly the long flights and the vast expense they involve. It’s equally difficult to manage things from Germany. With the six-hour time difference between Berlin and Florida, my workdays are extended to twenty hours. I already work several hours a day and then find I can’t wind down from work. And then the calls start up concerning my father. Sometimes we’re up till two or three o’clock in the morning dealing with problems over the phone. My partner and I aren’t getting much sleep.
You’re no longer living your own life
How do care issues impact caregivers directly?
In tremendous ways. It impacts people’s relationships in the form of separations and divorce, but it also leads to high rates of depression and illness. Most caregivers end up getting sick themselves. One reason is that you end up spending your time with friends and relatives talking about “how is he or she doing?” and you talk all about their health and mental problems. Eventually people ask “and how are you doing?”, and you say, “well, I’ve got this little pain in my foot” etc., and you’re no longer living your own life. Since you’re no longer bringing the “I” into the equation, you get depressed and you lose touch with who you are. You hold all this pain and guilt inside you, and instead of finding its value and what lies behind it, you end up getting sick. You hold it in your stomach, your heart, your head, creating stress and illness.
It’s like living two lives at once
So what are some of the structural problems people have to deal with in long-distance care? Yout talk about the flights, the time differences, the expense. What else is there?
There are issues around finding the best kind of services and contracting them. These services appear to be high quality on the surface, but in many cases they are anything but. There are tremendous issues around caregiver and subcontractor abuse, which we and other people have had to deal with. That’s a whole different story, believe me. But the bigger issue for me has become, what happens with my own household? Because I’m a mom with a partner and a fourteen year-old son. Trying to balance my own homelife with the dog, the child, my partner, my own life, and then my Dad and my stepmother, it’s like living two lives at the same time. That’s not something I ever anticipated.
This is clearly a problem that potentially millions of people are facing, particularly in a country the size of the US. And it must be a growing problem.
I recently read that one out of five households are dealing with this issue. So what do you do? Do you leave your loved ones alone, do you bring in outside services, do you bring them to live with you, do you facilitate the move to an assisted living facility (ALF)? How do you make that decision and what’s the best way to go? It’s one thing for my father to ask me for help, it’s another for me as an adult to accept the changing roles. It’s a shift from looking at my parent as someone I’m rebelling against or a person who knows it all, versus somebody who’s not even a peer, let alone on a pedastal, but instead somebody who really needs my help and to help maintain his integrity. Right now we’re thinking of bringing him and my stepmother to Berlin. He speaks Yiddish and some German, he’ll be able to get around – it may be the solution to many of these problems.
I felt like I couldn’t write anymore – I lost myself
How does your own work as a coach affect this issue?
I’ve been a coach for about thirty years, and this situation has impacted me in ways I never could have imagined. For one thing, my work has long consisted of designing large-scale change processes and providing individual coaching for leaders and organizations. While I have done it for people going through life-change, helping clients get to the core of what’s really important for them and then to live from that deeper integrity, most of my work has been at the corporate level. And as I entered this new situation, I noticed that my interest in working with large corporations has decreased tremendously. I had been writing and sending out a newsletter for five years, and suddenly I felt like I couldn’t write anymore. All my interests and abilities shifted immensely due to all the strain I was under. I decided that I had to start doing for myself what I had been doing for clients. As a caregiver, I realized I was really operating from guilt and fear, reactiveness, taking myself out of the picture and making everybody else’s needs my primary focus. I was seriously unhappy.
So how do you shift from giving advice to taking your own advice? It sounds like almost as big a shift from being your parents’ child to your parents’ caregiver.
It’s funny – I suddenly started asking myself the questions I normally asked clients: What do I want here? What’s important for me? In my case, we actually started to move back to the States to be near him, and my son immediately had problems with the local school there, which wasn’t nearly as good as the one he attends in Berlin. And that was a trigger point for me: What are the most important things for me to decide right now?
If we had bought a house in the place we had planned, my quality of life would not have been the same as here in Berlin. Now it would have been easier to work there in terms of the language and professional contacts, although I’ll admit I was in no condition to do coaching. But my own quality of life, my values, would not have been met. And the second most important thing for me was my son and my partnership. That was the trigger point. I asked myself, What is really important? And when I looked at it, it was really important to come back and support my own needs and my partner’s needs and my son’s needs. That put my father in second place, but I realized that I can support my father from here. So I came back.
The ALFs say they’re giving residents “more life”
Let’s take a closer look at the problems of caregiving. Could you describe your father’s current situation?
He’s currently living in an ALF [assisted living facility]. Everything looks fine on the outside, but he is very unhappy, and so is my stepmom. I see this company doing what organizations often do. They have these really high standards, but the different departments don’t talk to one another, so there’s no coordination. What happens is that each aspect of the support is separate. My father’s experience is that he feels he’s lost control. His medication is given at a certain time, his meals are served at a certain time. Fine. But if he shows up early, they won’t seat him, even if there’s space. If he shows up late, they won’t serve him. If he shows up with a hat in the dining room, they won’t let him into the dining room. We started going swimming, which is great for him, and they told him he can’t wear a bathing suit in the breakfast room at seven o’clock in the morning. To me, these things are absurd. They say they’re giving their residents more life, while merely adding the support they need in old age so that you can live the way you’d live at home. And yet it’s not the way you’d live at home. At home, if you’re going to go swimming after breakfast, you wear a robe and go swimming after breakfast. Everything is structured, and there is no flexibility within the system itself. So he feels like he’s lost control and doesn’t have the ability to do things when he wants to do them.
At first I thought he was exaggerating. But while we were having this very intense discussion over the phone, the cleaning woman walks in. She doesn’t knock, she isn’t invited in. He suggests that she return later, and she refuses. Listening to this over the phone, I got a strong feeling about the impingement on his rights.
It sounds as if one of the premises of assisted living is that the residents are going to be compliant and not have strong wills or needs of their own.
Yes, they create an arbitrary structure instead of supporting their clients in the lifestyle they just came from. It’s demeaning.
What do you bring to this situation as a coach?
My experience with organizations came in handy and we’ve already made a few changes. We’ve changed the menu to offer more variety. I got the departments to talk to each other, particularly surrounding my dad’s and stepmom’s issues. You see, the first time I called to ask how they were doing, I was told my dad was in the hospital. It turns out he wasn’t, it was somebody else. Now we’ve set up a system where they call me regularly via Skype, without any extra long-distance charges. But I still find it very difficult to make my father comfortable in this environment.
One thing that both he and my stepmom have pointed out to me is that moving is very hard for older people, and this ALF has no orientation program. I’ve suggested they provide one. So there have been changes.
But what it boils down to is my father being able to make decisions on his own. The question you have to face as a relative is, Do you support them in an assisted living facility or do you bring them home? We already went the route of bringing in a health care worker for him. Not only was that more expensive, but my dad had limited social contact and both of them found themselves more isolated than before. Later we found someone who was better. You see, bringing someone in works for some people and not for others. The work is poorly paid, with most of the money going to an agency, and under these conditions you don’t usually find people with a whole lot of creativity who can really involve your family members and keep them going.
Delayed by a volcano
From what you’re saying, there are two sides of it – what you’re doing for your father, and what this is doing for you and to you. What it is costing you, and not only in terms of money.
I have had to fly back and forth every six weeks, which costs a fortune. Then I have to work with and support my stepmother who is suffering from the side effects of alcoholism. She creates trauma on a daily basis - all out of a sense of self-preservation and fear of losing control. So there are a variety of problems I have to deal with and then create boundaries around and determine what was real and what was fear based, trying to create safety for them both. Finally I come back and I’m exhausted, needing time to get my feet back on the ground. So I lose at least a week when I come back, and recently I was delayed by the Icelandic volcano, of all things. It’s tiring and unbalancing for my whole family.
Now, instead of letting it all happen on its own, we sit down as a family and talk it over. I know that sounds great, but it’s really been stressful. Believe me, my partner and I get into some pretty big arguments when I ask my typical coaching questions, like “What do you want?”, and he comes back and says, “What do YOU want?” But we are all trying to figure out what we want and need, and also what will work for us, as individuals and as a family, in both the long and short term. It has been tough, but it has brought us a lot closer.
Learning to set boundaries
Is caregiving just a zero sum game where you’re providing and they’re receiving, or are there opportunities here for personal growth?
My whole life has centered around caring for other people and not setting boundaries. Even as a coach, when a client had a problem I would stop whatever I was doing, instead of telling him, Call back in two hours. Now I’m learning to do for myself what I tell my clients: Set boundaries, be clear about what I want, use my time in a way that is not dominated by traumas and emergencies. Now, when I get an emergency phone call, I have to discern whether it really is an emergency, and it frequently isn’t. So instead of everything regarding my dad and stepmom as emergencies, I’ve started to look at what’s important. Is it something I want to deal with? I’m also using these opportunities to figure out what I am learning and what I can offer.
Guilt is a driver
What happens when you don’t find your limits is that you burn out and then you can’t provide any service at all. You build resentment, and start acting out of resentment. It makes you angry and there’s no life anymore. There’s only depression.
Guilt seems to be a key word in caregiving.
Guilt is a driver. I’ve spoken to hardly any caregiver who hasn’t dealt with guilt issues. There’s so much guilt around parenting, setting boundaries, am I doing enough, am I making the right decisions, am I doing the right thing for my family… Guilt isn’t only the driver, it’s also what makes people so sick. But then people start making decisions about what really feels right for them vs. what they think they should be doing – because the “should” is the guilt. If you put the “should” in there – “the book said I should do this,” “the article said I should do that” – you start making yourself unhappy and uncomfortable and you can’t make good decisions. I find that each caregiver has to make a decision based on what fits them. It’s not as if we can write a recipe for success as a caregiver. The only thing that works is for each person to identify what is important for them and then make decisions around that. I guess that’s a recipe in itself.
If all you can do is nothing more than make a phone call once a month, then that’s all you can do. You have to be realistic and see where your boundary is. You have to allow yourself to be honest with yourself. Otherwise you will be fighting but not accomplishing anything. It won’t be good for the person you’re caring for, and it won’t be good for you as a caregiver.
We forget who we are
You see, most people go through life forgetting who they are. They do the same things over and over again. They go to work because they have to – they must, they should – and they forget why they started working in the first place. What they wanted, what first got them interested. So many emotions come up with caregiving – it touches all those trigger points, and if we delve into even one of them it’s like going home, finding who we really are as a person. And it’s not a long process. It’s like opening up a door. If you spend a couple of hours talking about it with someone, you don’t need twenty years of therapy to deal with your parent issues because you don’t have time for it any more. Instead, you look at what is coming up now and how to live your life, now and in the future.
Can we ever do “enough”?
So this all sounds good in theory, but how would you actually go about coaching someone dealing with guilt issues with a parent?
It depends on whether the guilt is such a serious issue that it is directly impacting their day-to-day life. In that cast, I would probably urge them to go to a therapist to deal with the guilt and family issues. But for most people, the guilt is “only” making their lives miserable. I think this provides an opportunity to look at what this guilt is. Now, in my case, there is a lot of guilt. One question I would always ask myself is, Am I doing enough? I should be doing more for him and for my son! How can my son thrive if I'm always focused on my father? Am I a good daughter, mother, partner? What more should I be doing? You see, that “should” is so strong because, after all, I can never do enough. And not only can I never do enough, I can never do it well enough. So a lot of guilt statements come up.
What I do with a client is try to find out what those guilt statements are. Find the one guilt statement that is the kingpin for all the others. Then we talk about it and find out where it comes from. What value has it had for them over the years in helping them get through school or be better at work? What was important about it? What’s important about it now? And I try to get them to ask these basic questions: How do you know when you’ve done enough? What does it look like to do enough? What does it mean and what impact does it have? When you ask the question, you reach an “aha,” that little shift, when you move from passively accepting outside forces to actively asking what you want. And then maybe you discover that what you want is to give your family members the best care and have a healthy life for yourself.
That was a huge shift for me. When I replaced the “buts” in my life with “ands,” I went from having to push to keep going, with all this guilt coming from the outside, to a shift where the energy and motivation came from inside of me, and my energy shifted. I went from being exhausted to being stronger. When my clients move beyond the point of “I should” and “I must” and I “have to,” the shift comes from inside, the motivation comes from inside. Everything changes. I don’t have to look for ways to keep my stress levels lower. My stress level drops, and I find the time to do the things I do. And this works for other people too.
So how are you going to help people achieve this from Berlin?
Well, right now I do a tremendous amount of telephone coaching. Even in Berlin, I’ve never met a lot of my clients because we work over the phone. In addition, one of my business partners and I are looking at setting up a business creating packages for specific caregiving issues, and we’d like to hear about more about people’s experiences. Our work will include stress-reducing methods and exercises to help people learn to relax around these tough trigger points. This way caregivers can heal themselves so that they can make truly balanced decisions in line with their own needs and their own integrity. Because integrity is what it’s all about.
What final advice can you give readers who are faced with the challenge of providing long-distance care to a family member?
You have to give yourself permission to be honest with yourself. Otherwise you will be fighting but not accomplishing anything. It won’t be good for the person you’re caring for, and it certainly won’t be good for you as a caregiver.