A caregiver perspective on recognizing dementia and building a support circle

Louise and Lisa Marrone
Posted 05 November 2018 by Fallon Health

By Lisa Marrone

Every caregiver has an experience as unique as the person they’re caring for. Yet, even though all of our stories are different, there are common threads of sadness and joy woven into each. Caring for someone with Alzheimer’s disease often reminds me of the saying, “God promises a safe landing, not a calm passage.” Many of my fellow caregivers know and live by those words.

Could it be stress?

It’s easy to brush away the earliest signs of dementia as forgetfulness, stress, coincidence or a normal part of the aging process. I tried to do that when my mother first started to exhibit slight and awkward changes in 2010. I knew something wasn’t right, but at the time I kept it to myself, as if that might prevent it from being true.

That approach didn’t work well for long. When my life became complicated by divorce, I was struggling to care for my two young sons, who were only a year apart in age—and that’s when the seriousness of Mom’s difficulties became apparent to me. My two brothers had also noticed changes in our mother and attributed them to her distress over my life circumstances. I wasn’t sure what was wrong, but I couldn’t ignore it any more.

More than the expected changes of aging

Mom was living independently and still driving at the time, but she couldn’t cope with much. Everyday life was becoming more and more difficult for her. She was getting lost in very familiar places, crying over everything, getting angry with everyone, and venting it all to me.

I reacted by trying to help her resolve all the issues. I shared my phone number with everyone she spoke with and had my own follow-up conversations with anyone she mentioned. That gave me the information I needed to realize that our roles were beginning to reverse. My motherly instincts kicked in. I knew I needed to prepare a plan of action and take ownership of what was happening, since my brothers were still convinced that stress was the culprit.

Navigating the health care system

And so it began. Although reaching out to the primary care provider is a recommended first step in this type of situation, it wasn’t helpful for us until we found the right PCP. The first doctor prescribed medication for anxiety, depression, high blood pressure, sleep issues and more. The number of medications complicated the situation—to the point that my mother accidentally overdosed herself and spent three days in the hospital.

The same thing happened six months later. I focused on finding a new doctor for her, and I learned a bit about medication management. Both were necessary as Mom stopped cooperating and started rebuffing suggestions and ideas—all while needing more support and intervention.

She would call me crying and sobbing in a way that I never want to hear again. It’s devastating and awful. I had no response. No answers. No reassurance. I was there to help her, but I was finding myself feeling helpless and at a loss as to how to help.

Getting an Alzheimer’s diagnosis

Without a support system, I felt alone on this journey of finding out what was happening to my mother and caring for her along the way. What I didn’t know then is that there would be many people in the days, months and years ahead who would step forward to help us—we just didn’t know them yet.

We remained in a confused, unclear state for about 18 months. The brain scan and psychological testing I insisted on was denied three times and then approved. After another six months of bringing Mom to additional appointments—she cried through every one of them—the test results confirmed her brain was showing symptoms of Alzheimer’s disease.

She didn’t cry or get upset at all when she heard that news. We finally had the answer. It meant we could now learn how to manage this thing called Alzheimer’s disease. Neither of us had a clue that so many people have Alzheimer’s and are cared for by family and friends at home.

Building a support network

We didn’t have a support circle. Only each other. Lisa Louise Marrone and Louise Adelaide Marrone. Mother and daughter with unspoken and unbreakable strength. She raised me with very few words and all action, so I decided to take action.

And when I started looking around, I found resources and people I never expected—and they became my support network:

I knew the future path would be challenging, so I tried to understand what would help my mom and to consider what activities we could do together. Gardening was something she could enjoy on her own for a while and with me for a long time to come.

From this, we moved forward with positive action and created an Alzheimer’s Awareness program in our hometown. We adopted a public park and transformed it into a beautiful vision of outward love and support for those with Alzheimer’s disease. As we worked on these projects, our support circle grew.

Finding more care for Mom

When we got Mom’s diagnosis, I started learning more about the world of elder care. I visited extended care facilities, assisted living centers, rest homes, and day care programs, while managing the personal challenges of being a newly single mom.

And I brought my mother with me. I wasn’t sure why at the time, but I believe it was to help her understand that I wasn’t going to force her into anything she didn’t want. I needed her to know that I’m here to help her and will always be her side, no matter what is happening to her.

She was able to live independently until June 2018. That was when she started wandering away from home, and I had to choose a nursing home for her. I cried a lot during that time, but she surprised me again, this time with her flexibility and grace. As we walked into the dining area of her new home together, she introduced herself to fellow residents: “Hi. My name is Louise. I have Alzheimer’s.” She is positive and friendly, and she celebrates the smallest things in her day.

I hope my story will encourage you to recognize and welcome the supporters and resources around you, even when they come to you in unexpected ways. Reach out and ask your family and friends for help. But don’t be afraid to seek out non-family support and create your own new list of go-to people.

Change can be a positive part of life, and I’ve found that to be true even though it’s not always easy. Never give up trying new ideas, and always stay closely connected with people who cross your path along the way. Accept their help, and let them be part of the positivity. Have faith that you can do it, and you’ll land safely.

Lisa Marrone lives in Leominster, Mass., with her two sons and continues to be a caregiver for her mom.

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