On World Alzheimer’s Day, Here’s why the Caregiver Needs Care too

In India, most children fall into the natural role of becoming caregivers for their elderly parents or parents-in-law. More often than not, as women tend not to work, the role of caregiving falls on the women of the household – normally a daughter or a daughter-in-law.

Whereas looking after any patient can be stressful, research shows us that looking after a patient with Alzheimer’s or Dementia is the most exacting of all. It is stressful to manage a parent whose short-term memory is bad or completely lost, with a parent who gets frustrated and angry with their inability to remember even basic things, with a parent who seems to be physically OK but mentally ‘not there’.

I look after my father who has Parkinson’s disease and Dementia, amongst other things. I worked for over 29 years in corporate India, managing large, globally distributed teams, surviving bloody mergers, acquisitions and divestitures – and it pales in comparison to managing my sick father’s home and health needs.

I finally gave up working a full time job, and currently do some consulting. A major chunk of my time and effort though, goes into managing my father’s home and health. And that is more than a full time job.

Even now, when I am asked what I do, my standard, reflex-response is “Nothing”. And that is a big lie. I do a hell of a lot of work. I am just not paid for it. The work does not have a time slot in a day or week or month. There are no appraisals and no increments. There are no awards, rewards and recognition.

Unfortunately, with all the activities and mental space that my father’s care takes up, I soon began to forget about myself – the caregiver. I became, as I thought, the only person who could take care of him. The person solely responsible for him, 24 hours a day. Always on call, even in the middle of the night or the hour before dawn. Even when I was at dinner or at the movies, I carried my mobile phone to the bathroom.

My conversations revolved around my father, what he was doing, what he wanted, etc. Never about me, what I was doing, what I wanted, etc.

But caregivers, like me, need to be cared for too. If you are a caregiver, then let me tell you, NO ONE is going to take care of you. I have realised that I need to take care of myself too. I need to demand care for myself and from those around me. I don’t do this well myself. It is a struggle. I am trying.

Here’s my list of caregiving that I believe all caregivers need:

Give up the Guilt

I don’t know why I feel guilty. I am doing a lot. I am doing things to the best of my ability. My father is happy (so he says). Yet I feel guilty. Guilty that I am not doing more, that my father gets depressed, that his health is failing. I have to consciously keep telling myself not to feel guilty. I have to be realistic about what I really can and cannot do.

Don’t Over-research the Disease and Prognosis

This is a tough one. I need to research my father’s illness so that I can understand and deal with his symptoms. But the prognosis of his diseases frightens me. I don’t know what I am going to do if and when my father reaches the end-of-life stage. Can I watch him slowly starve to death, or lose his ability to breathe? I don’t know. What I do know is that I don’t want to.

Take Time Off

Find someone – an uncle or aunt, a cousin, a brother or sister and ask them to look after the Alzheimer’s/Dementia patient parent for a couple of weeks at a stretch, and as often as you can get them to give you a break. And yes, a couple of weeks. A couple of days are not enough. You need to cut off completely from caregiving responsibilities to really unwind. Go away in these two weeks. Don’t call. Don’t think about the patient. I have not done this myself till now. Starting tomorrow, I am going to take time off for 10 days!

Do Something Artistic

I wanted to write. There were earlier attempts, but they all fizzled out for various reasons. Then I got great advice from my friend Justin – “Write for the pleasure of writing. If something comes of it, then consider it a bonus.” And I did write. I created a blog. The blog posts got picked up by people. I was commissioned to write articles. It turned out to be the most fulfilling thing I could do for myself.

Have THE Conversation with the Patient Parent

This is the conversation about what our parent would want in terms of end-of-life care and/or medical intervention when their illness progresses to a stage where we can no longer take care of them ourselves. I have agonised over this conversation for over a year. The ONE time that I have had a conversation with my father on the medical intervention he is OK with, and with his doctor on what we can do, there was a sense of relief. I have not had the complete conversation yet. But I am working my way towards it.

This is not a complete list, and I am not an expert at helping caregivers take care of themselves.

But I hope this will help start a dialogue between caregivers so that we can help each other.

(After working in corporate India for over 29 years, Sangeeta has taken time off to look after her father, who was diagnosed with Parkinson’s Disease in 2008. Sangeeta hopes that these authentic stories will help patients and caregivers understand and appreciate the impact Parkinson’s Disease. You can follow Sangeeta’s blog here.)