Most have heard the phrase “home is where the heart is.” But for seniors who develop dementia, home may also be where the mind is.
Those of us who have moved parents to a new housing arrangement because of health or safety concerns often hear our parent say, “I just want to go home.” That desire may be more than sentimental — it also may be where their remaining memory is based.
Cognitive impairments such as Alzheimer’s and other forms of dementia are the number one reason people age 65 and older make a long-term care (LTC) claim1 and now comprise approximately 50 percent of all LTC claims2. Many forms of cognitive disorders result in short-term memory being the first to go.
My own mother suffered from dementia; over time, her short-term memory faded to a point where she could no longer remember what she ate for dinner. She would call to see when I was planning to visit, not remembering I had visited earlier that day. She adored her two great-grandsons, but eventually could not remember their names.
But ask Mom about the past, and she was full of accurate names and information. I found I could still have quality conversations with Mom if I focused on the bygone days—and I was surprised to hear stories she had never told me regarding her early life and the lives of her parents.
The importance of in-home care
When a parent has lived in their home for a long time, the home’s layout and where they keep their possessions become part of their long-term memory. As short-term memories fade, being able to remain at home with what is familiar provides stability for a senior losing their grip with the world they once knew. For many seniors with cognitive challenges, long-term memory remains intact long after short-term memory fades.
That is why in-home care for individuals suffering from dementia-related conditions is so important. Studies show the outcome for patients with Alzheimer’s and other dementias are generally better when nursing home admission can be delayed.3 However, keeping a patient at home takes a lot of planning and can be very expensive without support from informal caregivers—usually family members and sometimes friends.
The unknown emotional and financial cost of in-home care
The cost of keeping a parent at home to receive the care they need may come from more than one source. In addition to the dollars directly paid for care, there is the cost of lost opportunities and out-of-pocket expenses family members may incur when they are part of the caregiving team.
It is reported that $522 billion a year represents the cost of informal care due to lost wages and benefits, out-of-pocket expenses and other costs incurred by the caregiver. 4
There is also emotional stress and increased health risks for caregivers. According to the AP-NORC Center survey5, 40 percent of caregivers say providing care makes it harder to manage their own health. Caregivers report they have less time to socialize and downtime for themselves and get less sleep. In addition, 44 percent report using their own vacation time to make the time to provide care.
Meeting these challenges
Finding the right balance is the key — for the patient, the caregiver and the family as a whole. Unfortunately, it is not always possible to keep a loved one or parent in their home. Adult children may live in other cities, leaving no good support system to supervise such a plan. In other cases, a family can keep the parent home for a while, but may eventually be forced to consider a new strategy to maintain the sanity of the family.
In my case, Mom lived in another city, and I was her only child. Dad had cared for her at home, but when he passed away, I had no choice but to move Mom to the city where I lived. We had discussed “old age” many times over the years, and Mom always said she did not want to move in with me—so at least that decision had been made.
Fortunately, we had resources to pay for her care. For her safety, I had to put her in a facility. She had a spacious apartment on the top floor of a beautiful assisted-living facility, but she was miserable, really miserable. She continuously told me to take her home. Eventually, I figured out the problem.
Finding a sense of home and peace
Mom had lived in one-story homes her entire adult life, where windows placed into view passing cars, children riding bikes and views of her back-yard garden—and now, all she could see were treetops.
In addition, Mom’s furniture was arranged in a fashion totally different than she had it arranged in her previous homes with Dad—and the floor plan did not allow me to rearrange the furniture into a more familiar setting. I realized Mom’s apartment did not feel like home.
Mom’s final move was to an assisted-living facility near my house that had great care reviews but was not aesthetically up-to-date. It was a ranch-style community where everyone had a ground floor apartment. There was even a screened-in porch off a large patio door with a small area where each person could plant flowers if they were able.
The floorplan was almost identical to the main living space of two of the homes my parents previously lived in.
I arranged Mom’s furniture and hung pictures the way she was used to. My husband and I made sure she always had a nice garden to look at. She never complained again of wanting to go “home,” because we made this place look and feel like her home.
She passed away eight months later, quietly and unexpectedly right after I had left her napping on the sofa she loved with her favorite large painting of daisies hanging above her. Mom left this world peacefully—at home.