Preparing for the caregiving role

As a caregiver, the most unpleasant phase for me was when I acted as a functional caregiver.  I tried my best to do things right, but had not grasped the full impact of the disease on my mother’s personality and behavior, and didn’t know how to avert or handle challenging behaviors. I used  ‘common sense’ and rationality, and when they failed, I got frustrated, irritated, angry, exhausted, or just depressed. Those emotions didn’t help, either. 😦

I was stressed, and struggling to keep a normal life running so that this stressful activity did not swallow me up.

The switch happened when I sat down to review my life and saw how all-pervading the impact of my caregiving role was. My social life had vanished, my circle of friends pruned down significantly. I had been forced to adjust my career direction and intensity dramatically. My mindset had changed, my emotional and intellectual mind-share had changed.

Heck, I thought, caregiving has become my profession! This is how the Bedouin must have felt when the camel took over the tent 🙂

The next step was obvious. If caregiving is large enough to be like an alternate career, I need to train for it.

So I got myself a bunch of books and tapes, surfed online groups, started checking out for volunteers in this area in my city. I read, mulled, read. I discussed.

And I realized that all I had read and understood would make my life simpler – I should have done it earlier and saved myself a lot of time and energy wasted in getting frustrated or desolate.

My stress dropped dramatically as I started appreciating reality and tuned my mindset to it. I no longer felt out of control, and caregiving seemed doable without burnout. It was a massive relief to know I could do what was needed…

Many caregiving families do not understand that dementia-type problems are manifestations of a disease. Doctors do not advise them enough, and these families struggle to make the patient “behave properly” or to adjust around the “stubborn, unreasonable”  person.  The inevitable burnout happens, and they dispatch the person to the other siblings, and when they run out of siblings, to an old-age home. The memory of this inability to look after a loved one is usually bitter with resentment and guilt.

Awareness of dementia is specially low in India where it gets muddled up with general old age, and where caregiving is not seen as a role at all, nothing more than normal home-making and respect for elders.

While many sing praises of the benefits of such a culture and a family support system, what this environment misses out is the fact that caregivers need a special set of concepts and tools to handle the special challenges posed by dementia patients. By lumping it under duty, love, and normal family life, we deprive the caregiver of knowledge that will help him/ her perform the role effectively. Equally tragic, we end up depriving the patients of a secure and supportive environment where they can continue to be as active as their condition allows them to be.

I wish doctors, when they diagnose dementia, would also warn caregivers of what lies ahead, and point them to resources so that they can equip themselves for the years to come.  I hope some day this will become part of a standard checklist that goes along with revealing the diagnosis.

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

Resource page to understand and 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, and deeply concerned about dementia care in India. On this blog I share my own 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 in this set of pages:

One Response to Preparing for the caregiving role

  1. Bob Tell says:

    I have expressed the following thoughts before on several blogs. However, I believe they are worth repeating. Caregiver burnout is a major issue for those with this awesome responsibility. Don’t overlook the role of humor to make things more bearable. Things that made me angry and frustrated when my mother (who had dementia)was alive, in retrospect are filled with funny happenings. This is true too for the many caregivers who read my blog and contact me about my book which emphasizes humor as a healing balm. Caregivers need all the emotional support they can get. Dementia is a disease that knows no boundaries. It is blind to the
    categories in which we usually place our fellow human beings. It can occur at the age of 55 or 85. It can happen to Blacks, Whites, Hispanics, Asians, Jews, Christians, Muslims, males and females, rich and poor. It will not spare ex-presidents or ex-prime ministers. It did not spare my mother. Tears are shed by husbands and wives, sons and daughters, brothers and sisters—in fact anyone responsible for the care of a loved one with dementia.

    Bob Tell, Author
    Dementia Diary, A Caregiver’s Journal

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