THE RIGHT MOVES
Making the right choices regarding aging parents' residential and healthcare choices
BY:DIANNE ZIMMERMAN
For the past few years, the phone calls had been coming more and more frequently and often in the middle of the night. My mother-in-law, Kate, at 81 years of age, was having difficulty caring for her legally blind, 83-year-old husband, Eli. I loved Kate and Eli dearly and always admired their integrity, wisdom and love of family. They were an unusually self-sufficient and engaging couple now confronting their senior years and the associated health issues which, in turn, required living arrangements with a new level of support. Starting out, our wish and our plan was to have their level of care match the level of their need, while allowing them as much independence as possible.
Kate and Eli had enjoyed a 20-year retirement in Florida. But now, with increasingly frequent illnesses, surgeries and doctor visits, we needed them to live closer. Long-distance caregiving was proving less than ideal. In 1991, we began the search for alternative living arrangements. The concept of “assisted living” was relatively new then and “retirement living,” as it was called at the time, did not admit anyone with a wheelchair and even limited walkers. We all had great concern about what would happen if one of them began to need help with walking. Home health care was no longer a viable option. And, at this time, the concept of a continuing-care retirement community was relatively uncommon and, in fact, the term had yet to be coined.
We searched carefully, contacted the local Area Agency on Aging, various national organizations and, new to the market, hotel chains building assisted living facilities. Ultimately, we found a facility on Long Island, New York, that served their needs: A large studio apartment with a kitchenette and all of the necessary support services. Breakfast and dinner would be served in the dining room, there was a large selection of community activities, including Kate’s favorite word scramble and the all-important weekly transportation to the doctor, bank, supermarket and pharmacy. The nursing home on the premises was a key factor in the selection as we fully expected one or the other to need skilled nursing support at some point in the future.
What followed, as is often the case in life, was not what we expected. Kate, who was very frail and in constant pain with arthritis in her back, became disoriented and confused—confused over when to give Eli his medicines for hypertension and his eye drops and confused as to whether she had given them to him at all. After serving as his “eyes” for the past 27 years, he and we could no longer trust her memory. We discovered that she was suffering from the early stages of Alzheimer’s disease. As the family gathered to discuss the situation and try to decide what to do, Eli suddenly fell ill with heart problems, a diagnosis of cancer and died in the hospital within six weeks.
With hardly an opportunity to collect ourselves we had to face the fact that Kate was dangerously living alone with Alzheimer’s, even if in an assisted living facility. What they offered was only minimal medical support and her condition was moving beyond that.
All our original research needed to be redone, and quickly, as the diagnosis of Alzheimer’s had changed Kate’s needs significantly. We visited and interviewed numerous assisted living facilities nearby, in Connecticut, paying particular attention to their dementia units. We were fortunate to locate an assisted living facility with a reputable dementia unit where she would benefit from structured activities and a knowledgeable professional caregiving staff.
Kate lived in her room at the ALF for almost two years, never really knowing where she was. She was well-cared for and we involved her in our family life, having her join us at various family events, having her granddaughter Kristin’s Girl Scout Troop performing holiday songs one year—all to maintain our connection with her. Despite our efforts, whenever we brought her back to the facility after a visit, she would say as we left, “Why are you leaving me here? I want to go home. I don’t live here!”
As her Alzheimer’s inevitably progressed, Kate needed more continuous nursing care and so we moved her to the dementia unit of a local nursing home. At 93 years of age, Kate now resides there, not sure who we are or where she is. It has been a heartbreaking road to see her travel. We console ourselves with the knowledge that certain turns in life are unpredictable and that through each step of the journey we’ve done our best to provide the care Kate needed when she needed it.
Navigating the complexities of long-term residential care for those we love takes tremendous time, effort and energy, but today there are a variety of options available to choose from at each juncture as care needs change. Begin your research into long-term care options early on, before your family member becomes seriously ill and in crisis. Prepared, in advance, with the information and knowledge you’ll need to make choices will allow you to spend quality time with your family member when you’ll both gain from it the most.
Important Steps:
Talk to the person involved. Ensure they have an opportunity to participate in the decision about where they will live.
Include all family members in the research process so that the decision is a mutual one.
Include local government agencies when gathering information about long-term-care residential facilities. They can offer a wealth of local knowledge and advise you of current regulations and legislation. The local Senior Center and Area Agency on Aging are good starting points.
Talk to your family member’s physician so you can clearly understand what medical needs may be likely in the future.
When evaluating various facilities, take into account these anticipated medical needs over time.
Visit as many facilities of different kinds as you can.
Talk to the staff and residents of the facilities if possible.
Visit the facilities at different times of the day and evening to get a sense of the environment and the staff.
Consult a financial planner and an elder law attorney about the Medicaid and Medicare implications of your choices.
As a caregiver, you will discover decisions to move a family member from his or her home, from your home or from one living facility to another are often fraught with fear, anxiety, guilt and conflict. Weighing all aspects of the options available, involving the entire family and consulting appropriate experts will help to ease the transition for everyone and give the person the care needed to live life with dignity.