Thursday, January 17, 2013

Caregiving... Hold the Shame.

I was recently on Facebook (who isn't?), and I came across a link to an NBC news story about caregivers and how they neglect their own health and well-being in service to their caree's.  I've posted a link to the story below because it is actually a good story, as well as being one of my biggest action items/talking points.  It focused on one gentleman who is bringing up his own children while at the same time caring for his mother, who has dementia.  It also detailed how his health was breaking down because of what he was doing.

I am very conversant with exactly how poorly caregivers treat themselves because they are spending all their time and energy on their charge.  It is one of the things I always get caregivers to talk about when I meet them, both because they need that chance to vent, but also because I can then give them options on other ways to take care of themselves as well as spread cautionary tales about what happens to the health of caregivers who neglect themselves.  I get pretty bossypants about it, at times!

As I said, the article brought to light a pervasive and serious problem, in a fairly straightforward manner, and I would have had nothing against it except for one sentence that caught my eye and instantly irritated me, highlighting as it did what I believe to be another pervasive and serious problem.  The sentence is as follows: " Prater is among the millions of Americans who have stepped up to do the right thing and take care of family members who can’t take care of themselves." The part that really irritates me is the part about, 'doing the right thing.'

When we have to perform a difficult task or go through a challenging time in our lives, it often comforts us to believe that its for a higher purpose, or greater good; that we are good people because we are doing this difficult thing.  Caregiving can be like this; sometimes it is comforting and helpful to believe that we are good people, or doing the right thing, or serving a higher purpose, because of the effort and sacrifices we are making - the love we are showing.  I'm all on board with that - it has, in fact, helped me through some hard times.  The thing I dislike is the implication that ONLY those people who physically care for their loved ones, 24-7, are doing the right thing.

Sometimes, the right thing is finding a good facility for your loved one because you know that's where they'll get the best care.  Quite often, the right thing is hiring a professional caregiver to help you help your loved one because you aren't physically or mentally capable of giving them the best care - the care they deserve.  Personally taking care of your loved one is not the only way to do the "right thing".

There are hundreds of ways you can love and serve and be present for your ill loved one that don't involve physically caring for them.  I reason I know this is that I had to give up care for my Father because I knew I couldn't personally give him the care he needed and deserved, and I feel that this is how I did 'the right thing".  There should be no shame in caregiving!

I guess my message is, there are a lot of ways to do the right thing; do the one that works the best for you and your loved one.

Keep on voting!


  1. Hello Joy I'm happy I found your blog. I too am a caregiver of my father with LBD. I saw this article and commented about it on my Facebook LBD Caregivers page. My take on it is that yes it's a good article generally speaking but appears to be written by someone who has not gone through the care giving role of a dementia patient. It says most of the right things but doesn't appear to have a deeper understanding of why care givers get caught in the trap of not taking care of themselves. It misses issues such as having someone to be with their loved one even for a couple of hours because they don't understand the disease well enough to deal with a difficult behavior, or are too intimidated by the behaviors to be willing to volunteer. Money to pay a professional for a few hours may be difficult to come by. It's not cheap! Caregiver's fears of trusting someone to watch over their loved one for a little bit can play a part. The list goes on and on with both rational and irrational fears but the point is, if you haven't gone through it you can't truly understand it as well meaning as you may be. It's just not as easy as "hey could you watch Dad for a couple of hours while I go to the doctor"? It's a very complex problem.

  2. Hi Paul! I'm so glad you found my blog, too, I'll look around for your Facebook page. While I'm glad the media is covering these problems, you're totally right, they don't go into them very deeply, and their solutions and suggestions are pretty pat. I hope you visit again and comment; its always a pleasure to meet another caregiver through the blog! Joy

  3. Even being a part-time caregiver is an emotional and financial strain. My mother lives in an assisted living residence, where they are very good to her. But she is still my responsibility. Her dementia is still my heartache.

    1. Being any kind of caregiver is an emotional and financial strain, Mariarose, and I'm so sorry you have to live with it. Having that responsibility every day until they leave this earth is such a weight, and people don't always understand that. Take care of yourself! Joy