Outside "Expert" Provides Important Ballast to Families Dealing with Dementia
I learned a valuable lesson in my professional life. Even though our organization had people with expertise on staff, sometimes employees wouldn’t pay attention. That’s when someone encouraged me to find a consultant. “Experts are people who live three rivers away from you who are able to come in and deliver the important message," I was told. I quickly found that premise to be true. And surprisingly, I also have found the concept of an outside expert to be very helpful in getting past family dynamics when someone in your family has Alzheimer’s.
Case in point: my family. When Mom was experiencing mild cognitive impairment, she also was increasingly paranoid. Unfortunately, my dad’s interactions with her were very matter-of-fact in that he would point out everything she wasn’t remembering. My strong-willed and proud mother didn’t take too well to Dad’s responses and increasingly became angry at him. That anger turned to rage, and at that point, Dad just couldn’t do anything right. At the time, I remember having multiple conversations with Dad about how best to approach Mom. My suggestions went in one ear and out the other, and he continued responding in a black-and-white way and Mom continued to respond with rage, eventually talking about divorce.
Although I talked about the importance of my caregiving mentors in an earlier sharepost, I'd like to single out one friend who served as our family's "outside expert." Her name is Pam and she actually was my third-grade teacher. (My class was her first teaching assignment when she was in her 20s). Pam had grown close to both my parents after I “graduated” from her class and everyone continued to stay in contact after we moved to another city. We went to Pam’s wedding and saw pictures of her children's adventures.
When Alzheimer's raised its ugly head in our family, Pam stepped in our family's unofficial (but very helpful) outside expert. Here's what she brought to the table:
An understanding of our family. Pam had known our family for approximately 30 years so she understood the dynamics. That proved to be critical in helping our family move forward.
- Resources. Sadly, Pam's husband, Don, ended up being diagnosed with early onset Alzheimer’s disease around the time that Mom’s mild cognitive impairment started showing up. Therefore, Pam was aware suggested resources to help Dad and me understand what Mom was experiencing at the time and what she would face in the future.That's how I came to buy "The 36-Hour Day" by Nancy Mace and Peter Rabins.
- Regular check-ins. Pam and Don became regular presences in our lives. When Don and Pam came to visit Mom in the nursing home, Pam would always make sure that she spent time with me. She would find out how I was bearing up under the load of caregiving and trying to determine what was going on with my dad, who at that point was living in another city trying to close down my parents’ household. And Pam would always leave our conversation saying that she planned to call Dad in order to check in.
- Specific and targeted advice. Although Dad doesn’t have a memory of those conversations, I’m sure that Pam tried to coach him about how to engage with Mom while they were still living together and also while Mom was at the nursing home. And I know for sure that after Mom’s death, Pam has worked with my father to help him get past his perception that he alone was at fault for Mom’s rages when she was experiencing MCI.
- A perspective from the outside. I truly believe that Dad was much more receptive to Pam’s counseling than he would have been to mine or my brother's about many of the issues surround Mom's Alzheimer's and care.Because she wasn’t a member of the family (and thus, didn’t have some of the baggage that family members so often carry), she was better able to help Dad, both in dealing with Mom when she was in the nursing home and his grief after she passed away.
So if your family is in a stalemate, you may want to consider approaching a friend or someone else you respect outside of your family who can serve as your outside expert. Look for someone someone who is trustworthy and sincere and who has your family’s best interests at heart. And be open to listening and to trying to take action. Take it from me – having someone like Pam serve as a resource to your family can make a huge difference!
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- An understanding of our family. Pam had known our family for approximately 30 years so she understood the dynamics. That proved to be critical in helping our family move forward.