Ask a Caregiver: How to avoid burning out
The Ask a Caregiver column features tips from experienced caregivers with lived experiences caring for those with dementia and memory loss. Roger Steinbach is a former caregiver and current volunteer at the Smith Alzheimer’s Center’s community outreach programs. If you would like to submit a question, email care@siumed.edu.
Q: I’ve been taking care of my spouse for a while, but I’m starting to burn out. How do I do this by myself?
ROGER: Rhonda and I were married almost 45 years. We did everything together, had the same interests and were always together. It was very difficult for me to consider having someone come in to help. If I had to leave, I felt guilty that I was not going to be there for her even though a professional caregiver would be. Sometimes I felt that no one could provide the level of care that I could.
As her abilities declined – including no longer being able to walk or feed herself – I realized that if I was going to continue to take care of her, I needed help. Caregiving for your loved one is a 24/7 job. I found I no longer had any socialization, “me” time, and caregiving was physically challenging. Having the professional caregiver was as much for me as it was for her.
The guilty feeling of having time for myself to enjoy life was not easy to overcome. I finally came to the realization that if I got sick, who would take care of Rhonda? Having professional home caregiving provided social, mental and physical health benefits for me. What I learned was I should have had help much sooner, had respite time for myself and realized I had nothing to feel guilty about.
Q: Friends and family members seem unsure how to talk to my loved one now. What can I tell them to make it easier?
ROGER: Early on in the dementia journey friends still called and connected with us. As it progressed, the calls and visits became fewer until there were none.
We tried facetime/zoom sessions with Rhonda’s sister who lived 500 miles from us. What I found was Rhonda didn’t seem to connect with the video call, and it was very upsetting for her sister to see the decline.
When friends and family don’t know what to say, they say nothing, which creates that awkward moment. Suggest they will need to be patient, give respect and treat the individual with dignity. Dementia affects behavior and language. You will hear repeated questions over and over. Don’t tell them, “You already asked/told me that.” Don’t give too many choices to a question; it will only confuse them. Instead, maybe give them a suggestion of the choice, such as, “How would you like a glass of milk?”
Just remember, patience and love will help get you through the journey.
Q: How do I make the home safer?
ROGER: My biggest fear was Rhonda wandering away. However, our backyard was fenced with gates and I kept the gates locked to allow her to sit on the deck or walk around the backyard.
I installed a doorbell camera, which sends motion alerts to my phone if movement is detected in the front of the house. If she did walk out the front door, I would be alerted on my phone and could look at the video and see which direction she started walking. Use of wearable tracking devices, such as an Apple Airtag, will help locate your loved one on your iPhone. For bathing, we had a shower chair and a power tub chair/lift that would lower her into the bathtub. Safety around the home looks different for each room.
When traveling, I had a couple of nights where Rhonda got up and walked outside of the hotel room. A simple fix for that was placing a chair in front of the door and our suitcases on or in front of the chair. You just need to be creative when trying to figure out solutions.
Q: What do I not yet know that I should?
ROGER: Rhonda was diagnosed with early-onset dementia at age 60. Something we should have done immediately, but didn’t, was work on our estate plan and legal documents. We did not have power of attorney forms for medical and financial. I thought I would wait until retirement to get them.
The individual must be “of sound mind” and someone with dementia may not qualify. It will all depend on how advanced the dementia is. If you cannot obtain the necessary power of attorney forms, your attorney will need to petition the court for conservatorship, but a conservatorship will take time to get and will be very costly. Really, it’s never too early to have these documents.
These tips are presented by an experienced caregiver. This information is not intended to replace treatment, care, or advice from a qualified professional. To make an appointment with the Smith Alzheimer’s Center, call 217.545.8000.
