Pacing for effective caregiving

One of the dilemmas I face is how to care without feeling burnout.

What my mother wants is that I sit near her all day, holding her hand. I cannot do it. I could do it for a day or two, maybe a week or two tops. But not month after month.  Not an year, two years, three. And burning out or getting resentful won’t help, because I’ll end up giving up just when her need for me goes up.

So I need to balance between caregiving activities, spending time with my mother, doing other things I need to do,  and doing things I want to do. I need a balance so that I stay happy and sane and in a state where looking after my mother remains fulfilling and even fun. It is a matter of pacing.

It is an unfortunate fact that even when caring integrates love and compassion, it can exhaust and cause burnout.  The term, compassion fatigue, is sometimes mentioned. People providing care-related services are often warned about burnout and advised to take time off every day, and also every week or month, to ‘recharge’ themselves. Many agencies that provide carers also insist that carers circulate between patients every few months, so that they don’t start getting upset/ irritated with a patient. Rotating between patients gives them a chance to get back that balance in life.

The responsibility for my mother is handled by my husband and I, along with a trained attendant. On the days when the attendant is there, hubby and I are not required 24 * 7, but we spend time with her as per a routine she is used to. We monitor her diet and medicine. We go out shopping and attend meetings for a few hours, but one of us is always within a can-be-back-in-half-an-hour distance. Obviously, this drastically limits socializing. And it is now ten years since I and hubby went for a vacation together.

Some people have advised me to use respite care. And maybe some day I will, if I think I will break down without a break. But a respite care can be a very costly thing, in terms of the price my mother will pay.  She had always been very scared of being abandoned, and is very fixed in what she can eat or not. With her ability to communicate almost lost, there is no way she can tell a stranger what she likes or does not. I think of my mother looking around a strange room, at strange faces, unable to ask for me, unable to understand the people around her, and I am not sure I need a break that badly as to risk subjecting her to that trauma. And while I know of a few caregivers who successfully took such breaks, I also know one case where the dementia patient left for a few days in a respite care stopped communicating to her family when they picked her back. It makes me shudder.

The only way, then, is to make sure I and hubby take enough breaks to remain sane within the bounds set by her state. A complete change of scene together is not possible, but at least take up activities that allow us to switch off this responsibility for a few hours at a stretch. Sort of learn ways to switch off that worry buzz in the mind’s background music.

As I educate myself for this new phase of caregiving, identifying activities I can still do in the gaps available to me will be an important part of finding my new balance.


More blog entries on caregiver role and identity are available here: Caregiver Role.

Resource page to prepare for the caregiver role is available here: Understand the caregiver’s role


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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

4 Responses to Pacing for effective caregiving

  1. Xahnia HyltonQuartz says:

    My heart goes out to you as I understand the hardship you are feeling. I am the caregiver for my husband who is disabled from a stroke in April 2000. Taking care of another person who is physically and mentally disabled is very exhausting.

    With all the daily burden caring for my husband, I have also lost my health, friends, family, employment income and pension, vacations, and have had to declare medical bankruptcy. My husband is now dying of kidney disease and when he passes away, my income dies with him and fear becoming homeless as I am unable to work due to caregiver related stress and trauma.

    There are many Family Caregivers who need help and support so I have opened up a blog at familycaregiverhugs.com to share my experiences as a caregiver and will soon open up familycaregiverheroes.com – a forum, for all caregivers to connect so we do not have to deal with our burdens alone.

    Please keep writing about your feelings as a caregiver, for others to read as many other caregivers feel shame and are so distraught that they do not want others to know how difficult caring for a loved one really is. Thank you for having the courage to share with others.

    • swapnawrites says:

      Dear Xahnia,

      Thanks for writing in. I just visited your site, and read about your situation; I think you are a very courageous and honest person, and very compassionate, and I wish you all the best as you handle this responsibility.

      And you are right, we caregivers must share the realities of caregiving with others. When we put up a brave face for others all the time, and deny our fatigue, people around us assume there is nothing challenging about what we do. Yet the chances are, these very people may end up having to care for someone, and at that time, they will be clueless (just as we once were, and still may be about some aspects of caring).

      It makes sense if society accepts this role for what it is, so that systems around us are supportive and relevant. Sharing our experiences will help this happen sooner.

      Swapna

  2. austere says:

    Some time away, Swapna, please?
    Mini breaks? Saunter through a mall? A garden? Really really see a sunset?
    I can only think back and realize how tough this must be.

    tc.

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