People living with dementia still need their friends
"Minding Our Elders" columnist Carol Bradley Bursack says there are several reasons longtime friends and relatives might not visiting, but it doesn't have to be that way.
Dear Carol: My dad used to be well-known in our medium-sized community because he was a businessman and active in local organizations. Then, he developed dementia and people gradually forgot about him. I understand that the changes in him were painful to see, but this tore me apart.
He spent 10 years living with Alzheimer’s disease before he died, and while at first some people did stop by, gradually his lifelong friends fell away. Why can’t people try harder to visit old friends and colleagues who have dementia? It would mean so much! — GH
Dear GH: Unfortunately, this is a common problem that families see, but it certainly doesn’t make it easier for us to witness. I’m sorry that you went through it.
The same thing happened after surgery left my dad with “instant dementia.” Most people simply couldn’t handle the change in him and stayed away. I also saw this with my mother-in-law who’d been active in her church circle. The women did make an effort to create a social time with her in the nursing home, but that happened only once. I believe that these women, too, found that they didn’t know what to say during the visit and it was just too hard to see the changes.
We supposedly live in more enlightened times now. While I’m not giving your dad’s old friends a free pass, I do think that lack of education is key. Since our loved one may not be able to communicate as she once did, or he may not recognize old friends, people feel that their efforts don’t matter. That, of course, is far from true. In fact, people from the past may be the best visitors since they can reminisce with someone with more advanced dementia, which can help trigger pleasant memories.
With persistence, caregivers and advocates are making progress, but it’s slow. Current caregivers can encourage friends and family to learn more by arranging small gatherings that include the person living with dementia. We can continue to take them on outings that they enjoy, always being tuned in to their stress and/or anxiety level for the appropriate time to leave.
We can remind people that just a half-hour visit from an old friend can mean the world. Friends might consider bringing a child or a pet (check ahead) if they feel that this extra sign of normalcy might help encourage conversation. By making these efforts for as long as possible, we can help our loved ones enjoy life while we show others how they can contribute.
Many people actually feel guilty for not visiting but they can’t make themselves do it because they fear they won't know what to do or say in what they feel will be an awkward situation.
The big picture solution lies in ongoing education and awareness, so in writing, you’ve opened some eyes. You can’t change the past, but you can keep advocating in memory of your dad, so I hope that can bring you some peace.
Carol Bradley Bursack is a veteran caregiver and an established columnist. She is also a blogger, and the author of “Minding Our Elders: Caregivers Share Their Personal Stories.” Bradley Bursack hosts a website supporting caregivers and elders at www.mindingourelders.com. She can be reached through the contact form on her website.