Dear Carol: My husband was diagnosed with Alzheimer’s when he was only 57, but he had difficulty with both decision-making and short-term memory for quite a while before that. He eventually had to retire. For now, though it’s not ideal, he can be alone for most of my workday. He can still use a computer, and he enjoys watching some TV.
Since I’m working only 15 minutes away from home, we’re holding off on in-home caregivers, partially due to the cost. Most of his friends are in our age group and still working during the day so he feels lost and sometimes depressed. Any ideas about how I can help his days go better while I’m gone? — TG.
Dear TG: While dementia at any age is a difficult diagnosis, early-onset dementia such as your husband has must be the most devastating. I’m deeply sorry for him and for your whole family.
You didn't mention what your husband did for work but apparently, his symptoms interfered with his ability to do his job. Sadly, this is often part of the devastation of a younger diagnosis. Early retirement, of course, creates financial hardships for many, but it also takes people out of society. Even people without dementia sometimes wrestle with the loss of identity that comes from no longer working, but when people are forced out this way, the feeling of loss is compounded.
Counseling could help your husband work toward accepting his current situation, so if he’s not already seeing a psychologist, I’d suggest that he consider it. Online sessions are now generally offered, which could eliminate transportation issues.
You mentioned that your husband’s not ready for in-home care, but did you know that there are some organizations that offer visitors for people living with health issues as a free service? One is Senior Companions.
Senior Companions is a volunteer organization through the Retired and Senior Volunteer Program (RSVP) which is part of the Senior Corps. The volunteers are all over 55 years old and can assist somewhat around the house, but probably their most valuable service is to provide a visitor to people like your husband who could benefit from some company.
Now that vaccinations are widespread, you could see if they are restarting in-person visits in your community. Your local Area Agency on Aging should be able to provide you with more information.
An additional idea is Stephen Ministries, which provides care and some companionship to community members who may be homebound. You could inquire through your church or go online to their website.
You’re correct that in-home care can be expensive, but keep the option open if you can find an agency that doesn’t require a large time commitment. Adult day services can be great for socializing as well, though, of course, that too is expensive.
This is hard, TG, but you sound like a strong and capable woman. With the right assistance, you’ll find the best way to handle each stage of your husband’s disease.
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.