Gut Instincts.

I wrote in my book that I wished there was more preparation for new caregivers so that they didn’t adopt bad self-care habits, and allow themselves to be pushed beyond their limits.

“There are so many potential dilemmas and pitfalls that caregivers face. There are often no clear cut choices, no set in stone options, and no absolutes, and we must navigate our way as best we can through the difficulties. There was no one to make any rules of give out guidelines, so people just made it up as they went along using who they were and what they heard, learned, and believed. There is not much official or professional training for the “family” caregiver so most family caregivers are thrust into the job without proper training in how to care for a patient or themselves.

I think that, lacking much official structure and guidance, caregiving has evolved into something potentially toxic and self-destructive. Doctors, advocates, professional, and caregivers, all need to fight what caregiving has become. We must teach people how to survive caregiving; and maybe even win at it.”

I really believe this, and I am excited when I hear about hospitals offering caregiving courses for the lay-person in how to give care without giving everything! It would be great if we could create some sort of organization strictly about caregiving that streamlined information and instructions and ways of doing things, and created classes in every city to help caregivers in everything from how to get someone to bathe who doesn’t want to bathe, to how best to speak to and treat your loved one so they don’t become agitated or angry. This might be a pipe dream but maybe someday.

On the other hand, guidelines and trainings aside, there’s a lot to be sad for your gut, and following what it and your instincts tell you, as long as it doesn’t lead you into not taking care of yourself. When I started Dad’s care, I was accustomed to having to cater to my chronic disease and fatigue before everything, so I was well-versed in being “selfish” with my time and energy. (It helped that we had the money to hire other aides.) I was determined that caring for Dad wouldn’t wear me out completely.

As well, I had never had much exposure to anyone with dementia, including how to communicate with them, yet Dad and I did fine together. I found that it was quite easy to let him remain in whatever internal world and time was most comfortable for him, and, since we were not incredibly close, I was able to make the shift from having him as a father, to someone I loved and was caring for. I told untruths, I redirected him when necessary, and reconfigured his environment to assist him. And I did most of this on my own reconnaissance. I pretty much winged it for the first year or so, and we did fine.

So yes, find classes, consult experts and other caregivers and forums and websites, for the best ways to give care for your loved and yourself. Try to get the right information so that you can start out right and hopefully remain in control of the situation. But don’t discount your gut, and your instincts – they can be powerful experts as well.