On Jan. 9, 2009, I became a member of a club no one wants to be in. That day, my husband of 26 years was asked a list of 30 simple questions by his doctor. At the end of the quiz, I became the wife of a man diagnosed with dementia.
It didn’t happen overnight, of course. I had suspected for months that something was wrong, but it wasn’t until he asked me when the carpet cleaner was coming by — after he had a very nice 20-minute discussion with the man who had just cleaned our rugs — that I admitted he had more than age-related memory issues.
When someone is diagnosed with dementia, everything changes for the loved ones dealing with the news. In Jerry’s case, he was unconcerned. “Grandpa Mike was senile,” my 75-year old spouse declared. No one knew it as Alzheimer’s disease (AD) back then. And there was certainly no thought given as to how to manage the gradual — or not so gradual — mental deterioration of a relative who no longer knows who you are.
Times have changed. The incidence of AD is nearing epidemic proportions, with 7.1 million people expected to be diagnosed with the disease by 2025, according to the Alzheimer’s Association.
AD is the only top-10 cause of death in the United States that is still on the rise, because there is no cure. It is also estimated that family caregivers across the country provide more than 17.9 billion hours of unpaid care to loved ones afflicted with the disease.
Fortunately, there are interventions that can help slow the progression of the disease. We joined a support group for couples with a spouse who had been diagnosed with AD, and I learned more from friends in my group than any other resource.
The most important advice I received was how to find the lifelines in a sea of change when you need them most. Trying to manage the effects of your loved one’s disease is only half the voyage. The other half is finding the safety nets that help you keep your head above water.
Here are some of the best strategies I learned for navigating life with a spouse diagnosed with AD:
Join a support group
Being a caregiver brings a flood of diverse emotions at different points in the journey. Anger, guilt, despair, hopelessness, trepidation, feelings of isolation — nearly every caregiver experiences them at some point. Yet they are difficult to discuss with family members or friends who have not paddled your canoe.
It really does help to talk with others who have been there, and who can sympathize, provide advice, and prepare you for what might come next.
Find respite care
For those caring for someone with AD, dementia constantly challenges logic and presents new day-to-day realities on an ongoing basis. Nearly 13 years into his disease, my husband cannot find the shower — after 31 years of living in our house. Recently, he woke up and announced that he wants to go home.
Another early morning, he wandered off in a panic, only to dash into our car when I found him shortly afterward. “What is happening to me?” he asked, fear flashing in his eyes. He could not tell me why he fled our house in the middle of the night, yet he did not believe that he has an illness.
Finding someone to relieve you from the constant vigilance of watching a loved one is critical. Living within an altered reality, with 24/7 responsibility for a loved one’s well-being, is a heavy burden. Every caregiver needs a semblance of normalcy, a time out with no surprises or emergencies, to find some balance. Enlist a family member or friend to watch your loved one who has dementia, and don’t feel guilty for doing so.
Find time for yourself
The sad reality is that 60 percent of caregivers die before the loved one they are sustaining. The pandemic was especially hard on caregivers, who had few options for respite amid the need for social distancing and quarantines. Finding simple pleasure amid the chaos is essential. Caring for oneself is key to staying committed to the care of a vulnerable loved one as the disease progresses.
Access adult day healthcare
Adult day health care has been an essential lifeline for us. When I drop Jerry off at Alzheimer’s Family Center, I am delivering him into the care of professionals who know how to keep him engaged, social, and safe. The nurses know what to watch for in terms of any changes in his health status. They, along with social workers, know how to manage dementia behaviors, and ensure interactions between staff and other patients remain positive.
The activities team provides brain-engaging games and events to stimulate his cognition, and aides help him with bathroom necessities. There is an entire team looking out for him as if he were family. And Jerry is right where he needs to be: in an environment with people who treat him with dignity and respect, and who keep him busy and feeling like he is living his best life, at 88 years of age.
For me, those five hours are a return to normalcy that I have not had in years. It is the respite I need to keep my home-based business running and the household in good repair. And it provides me with a sea of calm for a few precious hours each week, to let me just be.
Navigating AD is one of the greatest challenges anyone will face, but seeking out, finding, and grabbing the safety nets you find will make the voyage less arduous. And that will help you continue to be a lifeline for your loved one.