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.
Brendan and Kay Walsh of Salem are facing the uncertainty of their path ahead but they are facing it together.
It was August of 2018. Kay received the diagnosis of Alzheimer’s. Brendan remembers the day well. It was their wedding anniversary.
Neither Kay nor Brendan was surprised by the news. They each knew something was not right for Kay and had discussed between them the possibility of Alzheimer’s. Their two adult daughters were also aware of the memory and behavior issues Kay had been demonstrating. The diagnosis came as no surprise to them either.
Kay’s mother had Alzheimer’s and her father had a form of dementia. Kay spent her career as a Nurse Practitioner. She was more than knowledgeable and experienced. “I feel lucky because I know about the disease and I am not afraid of it.”
Kay will not hide from Alzheimer’s. She is facing it head on, with no denial. Her mission is to talk about hers and Brendan’s experiences and help spread awareness. She is concerned for her daughters and they are the reason she is doing whatever she can to combat the disease.
Brendan and Kay have together been “opening the doors,” as Kay likes to refer to the process they are currently undertaking. “You can’t stay in the dark, so we both talk to friends, family, and neighbors about what I am struggling with and what changes we have both had to make.”
As the caregiver, Brendan describes that he is clear what the situation currently is and that things will worsen as the disease progresses. “We will deal with the situation as it comes and make changes as we need to. We go with the flow of it and do our best. It is challenging and takes a level of patience, which has never been my strong suit. I am working on that.”
Sharing their story is helpful, but both of them are concerned about “the clock running.”
Doing all they can now means offering to speak to others. This past spring they were guest speakers at SeniorCare’s Dementia Friendly Summit. As long as Kay can manage these engagements, she wants to help spread the word. “Why can’t we do better where this disease is concerned? We have to open the doors. We have to talk.”
Travel is something they both enjoy and that too is what they will keep doing as long as they are able. This past summer they traveled on a working vessel visiting Norway and Finland. Kay finds traveling stimulating. It is easier than the day-to-day stresses of living with Alzheimer’s.
After Kay’s diagnosis at Mass General Hospital, she immediately joined a clinical study. As Brendan says, “It’s a long shot but it’s better than no shot.” Kay wants this to help others have hope for themselves and their loved ones.
Kay has seen changes in the year since her diagnosis. The most difficult and stressful part of the disease right now is name and word retrieval. “When I lose the words there is nothing I can do to retrieve them.”
Brendan seconds the stressfulness of her word loss. “Kay starts in mid-sentence sometimes and I do not know what she is talking about. She may not even be aware she has left out words. I know it is stressful for her and upsets her to not be able to find the words to explain herself.”
Kay wears hearing aids. Both she and Brendan acknowledge however that it is not always that Kay has not heard a conversation but that she is not able to process the words fast enough to comprehend the entire topic at hand.
Brendan thinks it is helpful to have an early diagnosis when you are dealing with Alzheimer’s because you can plan accordingly. It makes life a little easier. “You are not making judgements thinking you are being ignored for example when in fact she simply is unable to follow the conversation. When you are aware of the diagnosis, you are not making judgements that are not accurate.’
Kay has tried helping her situation by writing thoughts on paper but at the same time understands she will not always be able to accomplish this. Her work in the medical field as a nurse practitioner dictated organization and multi-tasking and she feels that background has worked in her favor dealing with Alzheimer’s disease.
Kay served as the Chair of the Board of Directors at North Shore Elder Services for many years along with serving on the Board of Directors at the Salem Council on Aging. After realizing she was not able to fulfill those roles as she once had, she stepped away from the responsibility. Kay spent 25 years working on getting a Salem Council on Aging (CoA)built. In honor of her dedication to that cause, the city of Salem and the CoA are in the process of creating The Katherine Walsh Internship for 2020, which will be a paid internship through Salem State University.
Kay is very aware that Brendan is the person who will have to take on more as the disease progresses. “That worries me. It could get worse for him in terms of the stress. I am concerned that he is pushing himself too hard.”
Brendan reiterates that he is very much aware that his role as caregiver will become more involved, more challenging. In the meantime, Brendan loves to cook and therefore does the shopping. He manages the household finances and in that regard, has for many years, been independent as a spouse. Brendan stays active with his daily 90-minute walk and plays golf when he can. He stays civically active in Salem where they have lived most of their married life.
Kay loves to clean and is able to do all those chores now. She feels they are “very balanced,” but that Brendan is incredible because he “does it all.”
The caregiving path does not diminish in its challenges but being in this together keeps Kay and Brendan moving forward with determination and courage.
Educating oneself about a disease such as Alzheimer’s or any chronic disease, is maybe the most effective way a caregiver can gain more power – to feel some control in an otherwise difficult process for which there is no blueprint.
Our agency of Elder Services of Merrimack Valley and North Shore is an excellent place to begin to gather information and resources. We have a Caregiver Support program and trained staff to guide caregivers and their families on the path of caregiving. It takes one phone call to get started (Danvers 978-750-4540), (Lawrence 800-892-0890). If you check our website pages, Danvers – www.nselder.org/family-caregiver-support-program/ or Lawrence – www.esmv.org/programs-services/caregiver-support/ you will find a listing of support group times and these are open to anyone without registering beforehand.
There is support and there are valuable resources. No one needs to be alone in the role of caregiving. If you or someone you know is in need of support, contact Elder Services of Merrimack Valley and North Shore. Let someone guide you on the path of caregiving.
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.”