learning about caregiving

A few days ago, I read the blog of someone whose father-in-law has dementia, and she shared the problems and overwhelm of caregiving. The blog brought back many memories of several ‘challenging’ situations I faced with my mother for years.

Things are relatively smooth for me now as far as behavior-related challenges, because my mother is not aggressive or abusive, but that was not always so.

I have been caregiving for my mother for twelve years now, and quite a number of those years were rather full of the typical problems of early and middle-stage dementia–wandering, repetitive questions/ comments, accusations that we were starving her/ stealing from her, hitting out, hallucinations, removal of clothing, what have you.

It was, well, difficult.

It was made even more difficult because we were clueless on why she was behaving like this. The doctors who diagnosed dementia did not warn us about any such problems–they just said her memory loss will increase and her ability to do things will reduce. None of the doctors suggested that we should educate ourselves about dementia. The concept of ‘caregiving’ as a distinct role, and of caregiver resources as a body of knowledge we could tap, was not mentioned by any doctor, and I had no idea such a thing existing.

In India, we are supposed to look after parents as they age. There is no distinction between normal ageing and dementia, and no special skills are expected. That a person looking after a patient with dementia may be facing a tougher set of problems, and may need a specific skill-set is not recognized by most people.

Looking back on those very painful years, I can see quite a few things that would have made my caregiving task easier. For example, knowing dementia-specific tools would have reduced the problems. I did not know that repetitive asking is a well-known trait of dementia, and often got irritated. Or wandering. I did not understand why my mother would suddenly want to walk out, or what I could do to stop it. I explained to her, I argued with her, I despaired. That’s not quite the best way to handle such behaviour 🙂

So yes, if someone reading this is looking after a patient with ‘difficult’ behavior, here are some suggestions I have:

  • Learn about the disease, at least enough to appreciate why the patient behaves that way. Next time the patient acts difficult, you will not take it as a personal failure on your part, or a deliberate attempt of the patient to hassle you. It is not the person, it is the disease that causes these difficult behaviors. I know too many caregivers who do not believe this; I was one such caregiver myself, for years, before I connected with the community and found everyone faced similar problems.
  • Learn the tools to handle difficult behavior. The way to communicate with a dementia patient is a skill that is easily to learn, if you know you must learn it. There are also ways to handle aggression, confusion, paranoia, and such stuff. They don’t always work, but they work often enough, and they reduce caregiver stress. I, out of ignorance, delayed this step. I think life would have been far more pleasant for my mother and for me, if I had known this earlier.
  •  Know that you are not alone. Connect to a community to share caregiving stories and tips. There are online suport groups, discussion groups, blogs. Tap organizations in your city, and locate support groups. There are counselors. I have found support groups very helpful, and now I see there is also a wealth of information available online in dementia-specific sites as well as blogs. And using these resources, as well as friends and relatives…
  • Ask for help. Unfortunately, people who can help are not always willing to set side their preconceived notions on ageing and dementia. It is necessary that persons who help do understand some basics of the disease, or they may stress out the patient more. Unfortunately, too many people are ready with advice, but very few are willing to learn. I, for one, have not been able to tap the friends/ relative route for help, but I do have an excellent attendant for my mother, and I have trained her for dementia caregiving. Perhaps, if I had to do it all over again, I would have taken a more active role in trying to educate people around me about dementia, so that if they wanted to, they knew how to help. Also, help is easier to get for some activities. While many people are uneasy about facing the dementia patient (it gets unnerving), they may be willing to help out in shopping or bank work, or other such errands.

I think the key to it all is awareness. Caregivers being aware of what is involved in this role, and people around them being aware enough to appreciate and help.  I am always amazed at how little people know about dementia or caregiving, even people who have had dementia patients in their family, and have seen care being given, or cared for such patients themselves. I am still learning about it myself, and every time I meet someone or read a book or a blog, I pick up one more tidbit that is useful.

In my early years of caregiving, I did not fully register that I needed to train for the ‘job’–I assumed it would come with common-sense and instinct. As I started facing difficulties, I tried to locate resources, but did not know how to, and when I did not find material easily, I assumed there was none. Now, I treat  caregiving as a defined role I have undertaken, and study for it just as I would study for any assignment I take up. And ever since I adopted this mindset, I have found caregiving both simpler and more fulfilling, because I understand and appreciate it so much more.

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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.

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