A Caregiver’s Transition in Dementia Care

John Gormley and his wife Collette celebrated their fifty-fifth wedding anniversary October 1st of 2015.  It was the same day that Collette moved into an assisted living residence’s “memory neighborhood”, marking a transition for John, the caregiver, as he relinquished control of her every day physical needs.

“I’m still trying to adjust to this transition; living separately from my wife but still being her caregiver. Unless you have dealt with caring for someone with Alzheimer’s, you can’t fully understand the impact it has on your life.”

John reflects on meeting Collette at her Salem State Junior Prom. John was a senior at Merrimack College and was the date of Collette’s best friend.  John laughs at the memory of Collette’s pleasure in sharing the story of how John told her, “I’m going to marry a girl like you someday.” “I actually did really say that to her,” claims John.  He also made good on that statement.

John served in the National Guard and did his training at Fort Knox in Kentucky during which time he and Collette relied on letter writing to continue their relationship. John proposed in 1959 at York Beach, Maine and they married in 1960.  Once their two daughters were of school age, Collette started teaching elementary school and later middle school in the Salem school system, from which she retired after thirty-three years.

“Collette was a very respected and well-liked teacher. She was known as being tough but fair.  She was always a take-charge person and she is still that kind of person.  Collette was also very socially connected.”

After retirement, the couple enjoyed traveling. They were engaged in numerous social activities and had a strong network of friends.  Together they organized the social activities of their condo association.

Signs of Collette’s memory loss began to surface about four years ago. “It wasn’t something we focused on until it became more evident and others began to notice.  Collette’s mother had Alzheimer’s so we knew what the disease could look like.  But when it is happening to you or someone you live with, it feels different; it feels new, like something you know nothing about.  We sought medical advice and the diagnosis was Alzheimer’s.”

As for many, Alzheimer’s brought Collette fears and denial. This can leave the caregiver overwhelmed, not knowing where to turn and how to help while still maintaining respect for someone’s independence and dignity.  It can be a paralyzing time for the caregiver; questions and doubts abound.  The caregiver decides he/she can manage on their own, not wanting to put worry or responsibility unnecessarily on children or any other family member.

John was that devoted caregiver, determined to continue caring for Collette at home on his own, until those around him began to recognize the impact it was having on his own health. Fortunately intervention came from several fronts and John and his family were sent in the direction of North Shore Elder Services, specifically to Kathy Perrella, Options Program Manager.  Kathy conducted a home visit with John and Collette and quickly assessed the need for extra help for John’s sake.  Including Collette in the discussion, it was agreed upon that Collette would try an adult day program which would enable John to attend a support group on site.  It was presented to Collette as an opportunity for her to assist other participants at the program and to Collette, ever the teacher, this sounded like a viable choice.

The day program worked for a few weeks and gave John and his daughters, with guidance from Kathy, time to explore the other options available. She recalls, “When I met John he was trying to do it all.  He felt guilty about having to put his daughters through this worry.  He had no idea where to begin.  Together with the family, we came up with a plan and they began to investigate long term care and assisted living residences.”

Timing was crucial and plans fell into place. There was availability in a newly opened assisted living residence and the decision was made to place Collette into the care of the staff in the “memory neighborhood.”  “I had to accept that Collette needed more help than what I could give her.  We needed outside professional help.  It didn’t mean the end of my caregiving role.  I am still the caregiver but it is a different challenge.  I am able to take better care of myself now.  It allows me to focus on her health and put my energy into overseeing her continued care.  I always have to balance what is best for Collette AND what is best for me.  That is the challenge.”

Kathy Perrella speaks to the support that is needed to caregivers during these stressful transition times. “That’s why support groups are so important and effective.  You are joined by others who are on the same journey and have experiences to share.”

John says he concentrates on the positives. He has met many people along this road and found help and advice and resources are plentiful.  “Part of my involvement now is getting the word out to others about the resources available, about the importance of making plans and accepting help, and about the importance of support groups and educating yourself.  I am able to cope better by helping others.  I know when you are in the thick of caregiving it is hard to focus on a plan because you are so tied down with the tasks of everyday when you are dealing with dementia.  It’s one thing to get through it, but you have to be realistic and take care of yourself and have goals and a plan.  You have to take charge and not let the course of the disease take over.  It’s complex but help is available if you are open to accept it.”

Kathy describes John as ‘spectacular.’ “He is recreating his life.  He is finding ways to give of himself.  He is the most grateful person I have ever met.”

John is involved in many volunteer activities and has recently begun the training process of North Shore Elder Services’ volunteer program. John is planning for the next transition in his caregiving role but is feeling better prepared than when he started down this road.  His love for his wife of fifty-five years keeps him going strong.  He has found hope to sustain him.

To learn more about the Options Advising and Family Caregiver Support programs, check out our website at https://nselder.org/resources/options-advising-family-caregiver-support-programs/ or call Information Services at 978-750-4540.

Author Info

Jayne Girodat

Jayne Girodat is the Communications Specialist at North Shore Elder Services. Along with ten years in the position of Caregiver Support Specialist at another ASAP, Jayne was a long-distance caregiver to parents for the same amount of time. That experience serves as motivation to better understand the issues of aging and to engage people in conversations about those issues. Jayne's background in teaching contributes to her appreciation of social media as a tool to educate readers on aging concerns. "I love asking people questions. Everyone likes to be heard. When you ask and then listen, you'll find everyone has a story and some of those stories are gems. I think it is particularly important to hear the voices of our older adults. Those are the stories I really connect to and hope to bring to North Shore Elder Services' audience."

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