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Caregiver

I remember my mother’s last few years as a blur. I was her sole family caregiver as her health declined with heart disease and dementia, and I also was working and had three kids at home. As her care needs changed over her last five years, she moved from her home to an apartment to an adult home to a nursing home, where she eventually died of heart failure. In addition to all these moves were frequent trips to doctors, labs, specialists, treatments and hospitals. I arranged for assistance from a team of caregivers who helped with meals, transportation and companionship, especially while I was at work.

Although I consider myself a reasonably competent person in many ways, health care is not one of my skill sets. When my mom started down the long, slow slide of failing health, I had no idea what to do.

So, I reached out. I called the Office for the Aging, talked to her doctors and pulled together all the information I could about services in the area. Although helpful, it wasn’t enough. The best advice came from friends. Friends could tell me what to expect, give me names and numbers of trustworthy companions and aides, and give me honest opinions about doctors and facilities based on their own experiences. They could suggest questions to ask and provide a listening ear when I was overwhelmed. They were my safety net. They provided me with the support I needed to love and care for my mom until her final breath.

Not long after Mom died, I found myself becoming a resource for others. I got calls from friends whose parents were declining, asking about my experience and looking for advice about caregivers, living options, and how to keep the many balls in the air. I shared what I could. I still have many friends today who are trying to navigate the strange and sometimes scary world of “parenting their parents.” Sadly, the landscape is more complex than ever now. The need for information and support is great.

One friend’s mother suffers from severe pain, for which doctors can give no diagnosis. They run from appointment to appointment with specialist after specialist, only to get conflicting (and often condescending) advice. Another friend cared for her parents as long as she could in their home while their health declined in different ways, one mentally and one physically. When home care became impossible, she moved one into a nursing home and one into an adult home, breaking both her heart and her pocketbook (over $18,000 a month!). Another friend struggles with how to convince her father to give up driving, concerned over his and others’ safety and also his loss of independence and dignity. Another weighs the merits of moving her mother from her hometown to Auburn, which would take her away from her friends and familiar surroundings but bring her closer to family. Still another faces daily guilt over the choices she has to make; if she has dinner with her mother, she misses her son’s soccer game; if she can’t take time off from work (again!), she has to miss her mom’s doctor’s appointment. Common in all these frustrating and heart-wrenching situations are love and compassion for the parents who are dear to us, and sincere desire to do what’s best for all concerned, while also juggling the demands of work, family and other responsibilities.

Recognizing the value in being part of a caring community, my church is starting a new conversation circle (a sort of support group) this fall for “children” of aging parents. This group will allow children of aging parents the opportunity to get together for confidential conversation, to share experiences and information, to be listening ears for each other, and to support each other through what can be overwhelming and emotional times. The group will meet at 7 p.m. the fourth Tuesday of each month in Westminster Presbyterian Church’s social room at 17 William St. Meetings are free and open to all. The first meeting will be Sept. 26. The conversation will be informal, but facilitated. The intent is not to provide expert advice, but rather to help each other love and care for aging parents. We hope this community of caring will provide support for each other during difficult times.

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Jill Fandrich is a ruling elder and clerk of session at Westminster Presbyterian Church, 17 William St., Auburn, where she edits the newsletter, church website (westminsterauburn.org) and Facebook and Twitter pages.

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