What Family Caregivers Want


What Family Caregivers Want

I sat with three strangers, poolside at the community club house. They listened patiently to my animated, hand-gestured tales about my mother's dementia antics. They never interrupted, except for brief comments. When I was done, I discovered one was a nurse, one a current caregiver, and one cared for her mother with early-onset Alzheimer's. All three women anticipated my story, so I was preaching to the choir, but they heard me out nonetheless. Did I feel better for having spilled my personal beans?

As I consider the possibility of being a Certified Caregiving Consultant, and sitting in the other chair, I'm pondering how I can best help another caregiver. While caregiving, I talked to anyone who would stand still long enough to listen, and probably kept talking to their exiting back as well. The conversations with hospice nurses, a social worker, and a professional counselor remain the most vivid in my mind. The nurses came to treat my mother's wounds, but their unexpected compassionate listening touched me. I didn't feel like they were rushing to the next client. There was no sense of judgement. The social worker reminded me over and over that I was doing a good job. The professional counselor greeted me in her office perfumed with aromatherapy oils, and decorated with a priceless hand-crafted textile mural from Ethiopia, and statues of vague female body parts. She never failed to remind me that my mother was too functional to remain on hospice. She listened, just as she was trained to do, and gave me some "homework", but I didn't feel any better after, or satisfied.

I keep wondering, what is it I want, when I talk to other people about my mother and my life as her caregiver? What do I need? Am I looking for sympathy, empathy, pity, praise? Am I trying to be funny and entertain with witty anecdotes at my mother's expense? Do I want to shock my listener, or gain strokes for enduring such difficult circumstances?

What do I want? What do family caregivers want?


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In looking back I think I just wanted to be \"understood\"... not given sympathy, praise or pity, but just a connection from someone who \"got it\" went so, so far. \n\nThen also on the practical side, I was always so grateful for tips and tricks on the real \"how to do\" things and leads to resources I'd never heard of before.


Yes, that's it, exactly. Thanks for sharing those moments here.


Jan,\n\nYou would be a wonderful consultant. I say go for it. Your blogs and e-mails have helped me so much. Maybe that is your next calling. Maybe you could be involved with help for the aftercare caregiver. I don't really think that caregivers know what they want. As you know I lost my mom very close to when you lost yours. When mom was alive, I wanted to travel. I wanted to do so many other things and was envious of my sister getting to do what I couldn't do. I am with you on what does a caregiver really want? I don't think any of us do. I am totally lost now that my caregiving has stopped. Now I can do other things, but I just don't have the energy to do them. If you find the answer to this question, please let me know so it will help me and I'm sure others as well. Take it easy on yourself and hopefully in time God will show us what to do next.\n\nLove ya,\n\nAnita


I certainly can't articulate what it is that I want when I need to spill. Today is one of those awful days that things at home and work have collided! I just want to go back to bed and wake up in my own house with my AH. I am not sure other than being validated that I can think of what it is tangibly that I so desperately need some days!