Guilt in Caregiving Relatives - And Who Am I Really?

Guilt in Caregivers - And Who Am I, Really?

Am I a caregiver? Is what I'm doing even considered care? For a long time, I denied these questions. I chose words like "help" and "support" to describe what I do. For a long time, I saw myself "just" as the daughter of a mother with Alzheimer's – and that, even though I have been caring from the very beginning. Initially, I took on a lot of research regarding medical questions and available support and counseling services, and accompanied her to major doctor's appointments, such as with the neurologist. Slowly but steadily, my support increased more and more.

Many family members gradually slip into caregiving, just as I did. The tasks become more extensive, and the support lasts longer. A progressive illness like Alzheimer's is also a process, often over many years. My mom needed more and more support, supervision, and care—and it's initially the family members who take this on. Step by step, my brother and I have taken over tasks from my dad, and now we are fully involved. We manage many things from afar, and as often as possible, we are there in person. I gladly help my parents, but it is a balancing act.

Looking closely pays off

This gradual progression also has something positive, as it gives one the opportunity to learn things and exchange with other people. However, it also carries the risk of not realizing how many tasks one has already taken on and how much time and energy this caregiving actually costs. Anyone who takes care of a dependent relative knows: Physical care is just a small part of the tasks. Caregiving also involves organizing appointments and therapies, communicating with the nursing and health insurance companies, and of course, all household activities.

Are you aware of all your tasks? Do you know what you accomplish? For a long time, I didn't. And even as the tasks increased, I didn't have a clear view of them. Sometimes I spent entire mornings trying to get hold of a doctor on the phone so that I could get a prescription that the nursing service needs (and luckily collects themselves).

So, it's worth taking a closer look and questioning: What tasks am I already taking on? How often do I do them? What is my role in this care network?

Being honest with oneself

After an initial assessment, it helps to delve deeper into it. "I can manage it," was always my motto, and that's how I was raised. Naturally, I promised my parents to take care of this and that because I wanted to support them. I sensed they needed assistance and visited them more often. But then I went from one caregiving situation (with my children) to another caregiving situation (with my mother who has Alzheimer's), often without a moment to catch my breath. I tried to work through the to-do list, but somehow it never ended. How could it, when the illness progresses and the tasks for the relatives constantly increase? I didn't pay attention to how I felt about it.

The result was: I was often dissatisfied, tired, and irritable. In addition, there were these feelings of guilt. 'I should be there more for my mom,' I often thought. I sometimes felt as if I had failed—even though I was accomplishing a lot. I had fallen into the trap that many caregiving relatives fall into. You give more than you can and often go beyond your limits because you have unrealistic expectations of yourself.

Appreciate yourself and be generous

I wanted to be the perfect daughter and take perfect care of my mom. But first, caring for and looking after someone with dementia is demanding and requires a network of helpers and caregivers. And secondly, I wasn't just a daughter. I thought I could take on caregiving in addition and handle the tasks on the side. Clearly, that was an illusion! Besides my mother, there were my children, my job, and the household, and all of that needed time. So it was time to honestly ask myself what my role was and how I felt about it. To admit to myself that my expectations of myself were unrealistic. It was time to be more generous with myself and to appreciate everything I was doing.

It can be helpful to write down how you really feel in the current caregiving situation. How stressful is caring for or accompanying a relative? What exactly is so exhausting? Studies show that family caregivers are highly stressed. Relatives of people with dementia are particularly under stress. The COVID-19 pandemic has exacerbated all of this, as a study by the Center for Quality in Care shows.

Sometimes it's hard to see and reflect on everything when you're in the middle of the situation. A simple method to gain some distance is to write a letter to yourself. This way, you automatically take on a higher perspective. Now and then, I write letters to myself, just as I would to a dear friend – and it's only then that I realize how much I'm already doing. My advice to myself is often: Take better care of yourself!

What guilt and other burdensome feelings want to convey

Guilt feelings are not just annoying emotions. They can cause lasting distress and complicate the caregiving relationship. If guilt feelings are not addressed, they can be transferred to other people or situations. Some people react with frustration and anger, while others become sad and experience depressive moods.

These subjective feelings of guilt often arise when one's own needs are not met. Too high expectations also promote them. I know both from my own experience. I looked after my mother in need of care and tried to support her as much as possible, but I didn't take care of myself. I didn't know my limits, didn't take my need for rest seriously – and didn't communicate it to others. I wanted to do everything right and thought I could manage it somehow. It took a long time until I felt and understood that it wasn’t possible, and that my situation was demanding and sometimes overwhelming. The following question helped me: What do I expect from myself and how realistic is that?

It takes courage and time to deal with one's own role. It may be saddening because it forces one to confront the relative's illness and its progression. And it can be saddening because it makes one realize that farewells must be made to hopes, expectations, and wishes. Yet this perspective is important, as it allows new things to emerge. It was beneficial for me not to have to resolve all of this alone. Counseling sessions, exchanges with other relatives, and good friends are invaluable. Therapy or coaching can also help to see one's own situation and clarify one's own role.

Set your own boundaries and also say no

You can only take good care if you're doing well yourself." – I've heard this sentence many times, but I only truly understood it recently. If I'm exhausted, overwhelmed, and constantly irritable, how am I supposed to take good care of my mom?

I can do good - and for that, I need to be well. One of the most important questions caregivers should ask themselves is: What gives me strength? What nice things can I do for myself? Where is my limit? No, this is not selfish. It is urgently necessary to be able to provide care in the long term. It doesn’t have to be big breaks, but it's important to do things that allow you to breathe and relieve tension. Sometimes standing quietly by the window with a cup of tea and taking a little mental journey. Taking time in the evening to read a book. And in any case, it helps to sometimes say no. Finding your own limits and maintaining them. Sure, some things need to be done. But does it always have to be right now? Can someone else do it? Caring requires a network and flexibility. Tasks and responsibilities may change.

Author: Peggy Elfmann (last updated on 11/04/22)

famPLUS - Competent in Everyday Care.