The very word “dementia” strikes fear into every person over 65 and every daughter or son over the age of 40. Because, when signs of dementia first appear in you, your spouse, a parent or another loved one, you know that your world is about to be turned upside down with difficult diagnostics, family dynamics and an overwhelming sense of helplessness. But there are ways to prepare yourself, smooth family dynamics a little and ultimately help your loved one cope with the kinds of loss that is unique to dementia patients.
The story that I am about to share with you is true. It is the story of how my husband’s family and I had to deal with the diagnosis and progression of my mother-in-law Nancy’s dementia during the pandemic of 2020. It is also a reflection on what we could have done differently that would have helped us plan Nancy’s dementia care in ways that would have provided her with better, more consistent care, as well as address the imbalance of caregiving responsibilities that so often burden the closest family member.
Here is Nancy’s dementia story:
We started to realize that Nancy was having some difficulties living on her own a number of years ago. She had started avoiding her friendly get-togethers for very vague reasons, saying that the activities had just gotten to be “too much” and that she was going to find other things to do. But hindsight being what it is – we now realize that it was getting harder for Nancy to keep up with conversations and participate in activities. She began to feel less like part of the group and more like an outsider. But these were all vague feelings that were easy to rationalize away.
My sister-in-law, Pam who lived nearby, was able to pick up the slack and help Nancy with bills, appointments and to help her problem-solve when things became too confusing. Pam was able to keep Nancy “scheduled”. After all – the goal was always to keep Nancy at home for as long as we could. But when Nancy’s dog died – losing her own personal anchor, Nancy’s ability to maintain a schedule suffered. She had lost that furry companion who reminded her to wake up in the morning and when it was time to eat and walk. So vitally important tasks like taking her medication began to be forgotten too, which led to several hospitalizations.
During one of those hospitalizations, Pam asked the doctors to perform a series of neuro-psychological evaluations. It was then that we realized the extent of Nancy’s decline. We could no longer explain away Nancy’s behaviors with a simple shrug of the shoulders or a “you must have misunderstood”. These reports helped to change the focus from isolated behavioral lapses to a documented problem that the family needed to help Nancy address. Suddenly, the geography that separated the family and the pandemic that made it hard to see these lapses for ourselves were irrelevant. We had hard proof that Nancy needed our help – even if she didn’t realize it yet.
Time for Next Steps
The family made the decision that Nancy would move into assisted living directly from her hospital stay. Using some of the tips that I picked up from the wonderful folks at Chandler Hall in lower Bucks County, PA, we tried to make her new home in assisted living feel as much like her old home as possible so as to reduce confusion and feelings of disorientation. For example, all of the dishes and silverware were in drawers as close to possible as they were before her move to assisted living. Her bedroom and living area were all arranged like before down to the pictures on the walls. We must have done a pretty good job, because Nancy didn’t seem to notice that her apartment had changed. She simply thought that she had new neighbors and new routines. She was happy for the structure that was provided for her. And she seemed to improve with more consistent company of these new friends and neighbors.
Family Care is Still Needed
My sister-in-law Pam was still the contact person and bore the brunt of the responsibility for Nancy’s care and saw Nancy weekly if not more. When Pam noticed changes in Nancy’s behaviors, she would notify the Assisted Living staff and adjustments would be made in her living situation for as long as they could without going into a specific Memory Care Unit. Maintaining consistency and routine is vitally important to patients with dementia. And much as we wanted Nancy to be able to maintain her current living situation, within about 6 to 8 months, it became clear to us that Nancy needed the kind of care that only a qualified Memory Care team could provide. The problem was that meant that Nancy needed to move to yet another facility. Nancy’s steady cognitive decline meant that a move to a new place with different ways of doing things would be more difficult for her. We were told to expect setbacks.
Nancy lives in Florida – not in Bucks County. If she were in Bucks County, Nancy would be able to take advantage of the continuum of care offered at Chandler Hall. By having a complete continuum of care – from Independent living, Personal Care, Assisted Living, Memory Care and beyond, the residents at Chandler Hall can move through their advanced years with a continuity of care, friends, caregivers, and familiar faces in a secure and welcoming environment.
Change is Harder when Memory is a Challenge
One of the things that became apparent in the early days of Nancy’s cognitive decline was that in order to form relationships with people, you need to remember small things about them. Things like their name, where they live, their family story and their friends and connections all help us to stay connected to our sense of who we are and how we relate to where we are. If you can’t remember any of those details, the people around you blend in together leaving you to remember feelings, but unable to remember any of the facts that form the backbone of conversations and relationships. Moving to a new facility would be disorienting. Nancy would need to learn to trust new staff, caregivers and other residents. That might prove to be difficult.
We have learned through our experience just how important having the ability to access appropriate on-sight care is to our loved ones and also our entire family. Knowing that your loved one has consistent, appropriate, professional care is – quite frankly – everything! It provides enormous peace of mind to both the family and the patient. Plus, it helps to ease the transition anxiety that family members may experience when facing the difficult decision to move their loved one to a different kind of living situation.
Making Hard Decisions
Moves are disruptive – for anyone. We want the best for Nancy and yet we need to respect the process and bring reluctant family members along too. We want people to know who Nancy is – who she really is. A good family relationship helps, of course. But it is the continuity of care that gives everyone the peace of mind that each resident and their family deserves. Nancy is still present. She has needs, likes and dislikes. There are flashes of her humor, her wit and her personality that appear every day. But we know that the Nancy we know is getting “thinner” every day as she slips further into her dementia-induced isolation. Right now, we are waiting until Nancy hits a point where even the most reluctant of our family members can no longer deny that Nancy needs specific help in Memory Care. And that will mean a harder, more difficult move to yet another facility that “specializes” in Memory Care.
Nancy’s journey is ongoing. And by default, our family journey is too. So my final word to you is, “Do your homework up front!” When you are considering personal care, assisted living care or memory care for a loved one, think about the importance of having a continuum of care on one campus, with experts who know how to provide the expertise you might need within the framework of a community you will need. And if you are in the Bucks County, Newtown PA area, look into the wonderful programs at Chandler Hall where Person Centered Care is the hallmark of all that they do.