The path of caregiving is fraught with twists and turns and ups and downs and most often, unique in and of itself. That path can be challenging in its navigation.
John Gormley of Salem officially stepped onto the path of caregiving for his wife Collette 5 plus years ago. A likely diagnosis of Collette’s Alzheimer’s disease cemented suspicions of her memory losses, which had begun to surface in 2012.
“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. However, when it is happening to you or someone you live with, it feels different; it feels new, like something you know very little about.”
As for many, memory loss 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 often 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 the devoted caregiver, determined to continue caring for Collette at home on his own. “I realized I needed help when I started pulling my daughters into the situation.” 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 and Caregiver Support Specialist.
Kathy conducted a home visit with John and Collette and quickly assessed the need for extra help for John. 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. Kathy recalls, “When I met John he was trying to do it all. He felt guilty about having to put his daughters through this worry. Together with the family, we came up with a plan and they began to research and visit several memory facilities.”
Timing was crucial and plans fell into place. There was availability in a newly opened memory care residence and the decision was made in October of 2015 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.”
Collette spent less than three years in her assisted living accommodation. A hip fracture in December of 2017 sent her to a rehab facility. The dementia interfered with rehab. She could not maintain her own stability and could not use a walker on her own. The transition to long-term care began in January of 2018 and continues today supplemented with hospice services.
John still travels the path of caregiving but as Collette’s disease has progressed, so too have the transitions and changes John has had to face.
It is a different level of caregiving today. John‘s mission is to help those caring for Collette to know who she is and what her needs are. The frequent change in staff presents challenges. John feels he is in the role of educator, making sure staff understands Collette’s issues. He makes his presence known and takes control of oversight of Collette’s care and acts as her advocate.
Collette was always fastidious about her appearance. John wants to maintain her dignity, knowing what was important to her. To that end, she frequents the onsite salon for hair and nail care.
Although there is no blueprint for the role of caregiving, John believes there are enough basic elements to each caregiving situation that you can rely on others for guidance and support. You do not need all the answers but you need to be able to gather information and be open to exploring options.
“You have to formulate a plan with short term and long term goals. Look at what your current day-to-day needs are. Assess what your loved one can and cannot do. Start with your primary care physician. The plan is dynamic as you go along. You have to be able to adapt. When you reach an obstacle, you may need to access outside advice. In the early stages of your short term planning, you will benefit by recognizing that you will not be able to handle it all on your own as time progresses. One has to also know the sign of stress in their caregiving role before one’s own health is jeopardized.”
John’s advice is to understand as much as you can about the disease. Then familiarize yourself with the available resources and connect with the “experts” and those who have experienced the disease. He finds great value in continuing to attend a caregiver support group through Elder Services of Merrimack Valley and North Shore. It is easy to become isolated in caregiving and support groups can help alleviate the isolation.
“Long-term care did not 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 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.”
John visits Collette 4-5 times each week. Hospice provides medical nursing care and assistance at lunchtime during the week. John assumes that duty on weekends. He keeps busy volunteering at a food pantry, bowling, and playing cards with friends.
“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, including professional support and support groups. 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 living while caring for a loved one with dementia. It is 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.”
Elder Services of Merrimack Valley and North Shore offer help. Caregiver support programs are available with trained staff at both the Danvers and Lawrence locations. You can find more information about the support groups at the specific websites – www.esmv.org/programs-services/caregiver-support/caregiver-support-groups/ and www.nselder.org/family-caregiver-support-program/ and
The Alzheimer’s Association offers a 24/7 hotline at 800-272-3900. If you visit their website at www.alzheimersnavigator.org you will find the Alzheimer’s Navigator, which helps caregivers by creating a personalized action plan and linking you to information, support, and local resources.
The Councils on Aging in your city or town are another great resource you can tap into for guidance in caregiving. They offer support groups, like the Memory Cafes. Check out www.nselder.org/blog/find-out-what-memory-cafes-offer-at-the-councils-on-aging/ to learn more.
Jayne Girodat is the Communications Specialist at Elder Services of the Merrimack Valley and North Shore, Inc. 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.”