I recently had a conversation at a party with a woman who had attended a seminar at which I gave a presentation. Soon after I introduced myself, she said, “Oh, I know you! You were at the Beeson conference.” She want on to tell me that my presentation entitled “How to Build Your Caregiving Team” was very meaningful to her. Her husband had just recently been diagnosed with mild cognitive impairment, and my talk encouraged her to begin to think about her team.
It really floored me when she said that her support group had been working on the handouts that I had provided as part of my presentation. She said they had been tackling them for three weeks straight.
So what were these handouts?
In my presentation, I start out discussing the various general groups of people who may be a part of your caregiving team: yourself, family, friends, long-distance family and friends, neighbors, faith communities, professionals (medical, financial, law), and community resources. I use stories from the memoir to illustrate how different people provided essential support to my husband, my family, and myself during the eight years of Harvey’s illness.
Then I show a slide of all the tasks that need to be performed in a household where dementia is present. There are thirty items on this list. Some things listed are routine chores that any household must address: bill-paying, cooking meals, yard work, and the like. When dementia enters the picture, new tasks are added, such as physical activity for the loved one, time away for the caregiver, and socialization for the loved one and the one giving care.
Seeing all those tasks listed on one slide is daunting, and I usually say, “This slide is not meant to scare you, but it’s pretty terrifying, right?”
I then give conference participants a few minutes to jot down names on the “Team Members” handout, then start assigning names from that list to the tasks listed on the other handout. I encourage them to complete this exercise at home.
Most people find that “Self” carries the vast weight of the tasks. As the loved one loses more of his or her abilities, the caregiver assumes more responsibilities.
I ask them to consider giving some of these tasks to others, creating or enlarging their caregiving team.
The woman who had attended the conference where I made this presentation told me that after she and her support group spent concerted time on the worksheets, she realized that she couldn’t and shouldn’t try to do it all by herself. She hired some outside help and is now feeling less frustrated by all she thought she should be doing.
Not all caregivers can afford to hire outside help, of course, so turning to friends, family, neighbors, and others can be the action needed.
I get so used to writing and speaking about caregiving for Alzheimer’s disease that I can forget what an impact my words have. Of course, it’s why I wrote the memoir, and I have loved the responses I have gotten via reviews and comments. But I don’t often get direct feedback like my new friend provided. It was humbling, but also reinvigorating.
If you’d like to see these handouts and work on enlarging your team, click HERE for the Team Members and HERE for the Tasks.