The strain of caregiving can greatly impact on the health of a caregiver. Boundaries and a community approach is essential
Persons with disabilities, whatever the nature of the disability, are usually the focus of concern, empathy and sympathy: “Ag shame, how terrible. I feel so sorry for you.” But caregivers (and here I am focussing on non-professional caregivers such as family or friends) often are burdened with a sense of obligation.
For the caregivers, obligation is born out of love, a sense of responsibility or many other reasons. Obligation can also come from outside the individual. The expectations and demands of others; siblings, friends and others who say things like “You are the best person for the job because…” followed by a multitude of reasons. Some are realistic, but there are also those reasons that serve only to absolve the other persons from taking up the responsibilities themselves…
For the person with the disability, it is what it is. They have to live with it. But for the voluntary caregiver it is a choice: “It needn’t be what it is, but I chose it to be”. And this is the crux of caregiver stress. It is optional, it is a choice. I choose to care, out of love, out of compassion, out of a sense of responsibility or even out of a sense of obligation.
Now, here I am a year or two later, exhausted and demoralised and, frankly, just plain gatvol. Not so much for the person for whom I care, but because of the situation I find myself in; isolated, frustrated, with no time of my own, burnt out and struggling with bad dreams and flashbacks of past events that were horrible to experience. My temper is frayed and my tears are just below the surface. I live on “cruise control” doing what needs to be done. But, for myself, I am slipping…
There are many research programmes and articles that examine and describe the effects of overburdened caregiving on caregivers, published under labels such as: “Caregiver stress”; “Caregiver Fatigue”; “Caregiver Burnout”, and more. Even post-traumatic stress disorder (PTSD) has been ascribed as a consequence of caregiving. Most of these articles define what their labels mean and describe the fallouts of their defined condition. But, when it comes to solutions, one word encapsulates all proposed solutions: The tiny little word “No”.
It is okay for caregivers to say “No”. No to the person for whom you are caring. No to all those who cheer you on so that they do not have to become involved themselves. And an especially loud and assertive NO to yourself.
But what does “No” mean?
“No” is not giving up and walking away. “No” is not throwing your love and compassion into the trash can. “No” is not cruel and heartless.
“No” preserves the caregiver’s health and sanity. “No” paves the way for long-term caregiving. “No” is the caregiver’s toolkit for survival.
We don’t have to feel guilty about saying “no”. If you feel that you are getting lost in caregiving; if you feel that you can no longer provide caregiving in this way; if you feel that the current demands of caregiving cannot be sustained for much longer, it is more than okay to say “no”.
In fact, you must say no. No means taking stock of your current situation. No means, “What can I change in order to cope?”. No means, “Where can I get help?”. “No” is the beginning of formulating a strategy for sustainable caring without losing yourself.
“No” allows you to continue to love and care without being weighed down by the burden.
So, now that we have taken the plunge to say “no”, what now?
First and foremost, don’t wait until you are ready to crash before saying “no”. The earlier in the caregiving relationship you step back, take stock and plan a routine for caring, the better for you and the person for whom you are caring.
Now ask yourself two questions:
- What are the needs of the person I am caring for?
- What are my own needs?
Write down the two lists of needs. Next it is time for a chat with the care recipient. Keep the conversation calm and supportive. The disability in question is a given. It is not something for which to feel sorry or to feel guilty about. It is something that needs to be managed in a manner that satisfies the needs of both parties as far as possible. As the caregiver, show your love and allow time for both of you to share your concerns. Add any new concerns to your list.
Now it is time to agree on structure and boundaries. As caregiver you are in charge of setting up structures and boundaries because you are the active person. But remember that your care recipient is the affected person, so to prevent resentment there needs to be good communication and mutual agreement on the proposed structure and boundaries.
Structure: What is the daily routine and the weekly routine? Remember to include breaks and “me-time”.
Boundaries: Set both physical and emotional boundaries. This is not a world where the care recipient can just load everything onto the caregiver who is required to have boundless energy and limitless love; just absorbs everything in their stride. It is a relationship of give and take.
The caregiver’s physical limitations must be taken into account and emotions must be talked through by both parties. In this way, understanding, fortitude and resilience is developed and the relationship becomes more solidified.
When boundaries are challenged with unreasonable demands or emotional outbursts, an assertive “no” comes into play, but with empathy and understanding. Be careful that the care recipient’s emotions do not infect you to respond in kind.
If you as caregiver maintain control, this will help to sustain your physical health and your emotional state of mind. But if you need a good cry or a loud scream to vent your frustration, do not hold back. Cry and scream to your heart’s content, but do so in private.
There is an old saying: “It takes a village to raise a child”. We can also say, “it takes a village to care for a person with a disability”. So, say “no” to going it alone. Say “no” to social isolation.
Don’t let siblings and mutual friends tell you that you are the best person for the job and then step back from their responsibilities. Say to them, “Thank you for the compliment, but if I am to remain the best person for the job, I am going to need your help”. This is where you do not accept no for an answer.
Also make a point of facilitating social contact. Invite friends and family over. If the care recipient’s mobility allows for it, go out for lunch, coffee or other social events. Social isolation can be devastating – to both of you.
By setting structure and boundaries and by the constructive use of “no” caregiving can become an experience of privilege, an expression of love that builds the caregiver’s sense of self-worth as well as the recipient’s experience that life is there for living and enjoying, despite the limitations of disability.
“No” need not be a negative. It can also be a reality check and a means of survival.
A personal note: My wife, her sister and I shared the heart-breaking privilege of, over a period of five years, guiding both my parents-in-law through dementia aggravated by psychotic episodes, until their eventual passing in 2019 and 2021 respectively.
We suffered many of the stresses, anxieties and heartaches of caregiving, but we came through because we shared the burden between ourselves and, when it became necessary, also with a frail care facility. There were many instances when we said no and there were instances where the frail care staff said no to us.