Caregiving & Coping: Insights from the Beginning of Our Alzheimer's Journey

In 2022, a review on the psychological effects of caring for Alzheimer’s disease patients was conducted. It identified a decrease in the quality of life, alongside high levels of anxiety and depression.

Our Journey

We all knew there would come a time when Papaw (our grandfather) wouldn't be able to care for himself anymore. He was diagnosed with Alzheimer's disease years ago, but our family only learned of this in July 2024—just a couple of months before the passing of our grandmother, Nana.

When Nana was placed in hospice, I noticed a decline in Papaw's ability to care for himself. Since Nana could no longer assist him, it became our responsibility to care for both of them. Fortunately, we had nurses who visited regularly to care for Nana and Papaw. However, after Nana's passing, Papaw experienced a noticeable decline. Initially, we didn’t fully grasp the extent of his deterioration. He began rejecting his favorite nurse, getting angry quickly, and demanding more independence. He wanted to experience a bachelor lifestyle he never had, as he had always lived with family or Nana. For the first time, he was living alone and attempting to care for himself.

We respected his wishes, giving him the space he requested. We reduced our check-ins, visiting only when he specifically asked or when it seemed necessary. However, it wasn’t long before the inevitable happened: he began forgetting to take his medications. What started as mild symptoms soon escalated. Unfortunately, he also developed pneumonia and metabolic encephalopathy—a dangerous combination. We called an ambulance and got him to the hospital just in time. He was immediately restarted on his medications, and within a short time, he returned to his old self.

This was a shock to our family, especially since we were still processing Nana’s passing. Papaw admitted that he hadn’t realized how much her death had affected him. He acknowledged that he did need assistance, which we were more than happy to provide.

Wisdom from the Journey: Lessons You Can Use

Don’t Be Afraid to Take Control of the Situation
When we suspected that Papaw wasn’t doing as well as he let on, we organized a check-up involving multiple family members. As a team, we worked together to do what was best for Papaw, even if he didn’t want our help.

It’s Not a One-Man Show
Although my sister Tiffany was named power of attorney and was primarily responsible for Papaw’s care, this was truly a family effort. We all came together to help in any way we could—whether attending appointments, managing medications, preparing food, or running errands. Papaw had a whole team of personal assistants ready to support him.

Give Yourself a Break
If you’re feeling overwhelmed, don’t hesitate to ask for help and take a step back. Relax, read a book, listen to a podcast, or go for a run—whatever your preferred form of self-care is, make time for it. You can’t care for others if you don’t take care of yourself.

Pro Tips from Our Journey

Find a Team: Gather a group of close family and friends willing to step in as caregivers when needed. These are the people you can brainstorm with and rely on for help with specific tasks.

Ask for Help: When you’re feeling overwhelmed, remember that you don’t have to do it all alone. Family, friends, nurses, or social workers can step in and offer support. If you push yourself too hard, you won’t be able to provide the best care. Taking care of your loved one means taking care of yourself, too.

Don’t Be Afraid to Speak Up: Sometimes, your loved one with Alzheimer's may want one thing, but you know they need something else. Try to find a compromise that works for everyone, but don’t hesitate to make tough decisions when necessary.

This was an incredibly challenging time for our family, but it helped us grow in many ways. I’d love to hear how you and your loved ones handled similar situations. Sharing your experiences can be therapeutic and offer a chance for reflection, so feel free to share your stories in the comments below.