Recently my loved one was moved to 24-7 assisted care. Soon after, he became ill and spent two weeks in the hospital, and then he moved to a 24-7 nursing facility. Originally, we moved him because he was having difficulty caring for his personal needs and wandering in search of "home" at all hours of the night. He needed 24-7 oversight, and after considering the options available for that care, we opted for a lovely assisted living memory unit. The care at the unit did not match their promises, and because of that, my loved one got very sick. So now he's in a 24-7 rehab/nursing facility. Is he happy? I'd say no, but he also wasn't that happy when he was home and having multiple challenges. Is he safe? I'd say yes.
So, as I think about this care going forward, I want to go back in time first to review the stages of Alzheimer's we've lived through so far.
First, there was the odd stop in the middle of the road and going the wrong way on a one way rotary when driving years ago. I knew that something wasn't quite right, but I chalked it up to stress and tiredness. Then there were the reports of getting lost in the car when driving to New Hampshire. Yet, he told us how he used the compass on his car to find his way home.
COVID hit and everyone was relegated to their homes for the most part. That was a good fit for early Alzheimer's since the disease had little effect on home life.
Then there were the episodes that demonstrated the deepening of the disease including trouble doing the wash, missing signs of needed home repairs and maintenance, getting lost for hours in the car, leaving food too long on a hot stove, inability to manage finances, falling for telephone scams, getting lost on walks in the neighborhood, losing track of time, and inability to participate in long-enjoyed pastimes such as golf, Sudoku, and long woodsy walks.
All along the way, we sought activities that he enjoyed. Initially there was support for his weekly golf games thanks to the help of friends. There were family celebrations for birthdays and holidays too. And there were lots of long, woodsy walks when he could walk a good three miles, then two, then one, and now a short distance. There were also the long historic drives when we visited many places that he loved. There were many talks about the days of old where we learned about lots of family history including many memorable events such as his childhood experience at the Boston Marathon, his dad's love of the outdoors and many excursions to lakes, forests, and beaches, the early days of dating my mom and their wonderful adventures in New York City and Nantucket, his Coast Guard experiences, and the countless electricians he worked with and the jobs he supported throughout central Massachusetts. Amongst the walks and rides, we visited many lunch and ice cream spots too, and at every visit there were more stories about past experiences, friends, and relatives. At every junction of the deepening dementia, we looked for the light--the positive experiences that bring happiness.
More recently caring for personal needs became more of a challenge--the kinds of needs that can result in illness if not given proper attention. Help at home by a myriad of loving caregivers including family, friends, and hired help created a schedule of supportive care, but then those needs grew deeper and the care in place was not enough. Hence, the resulting moves.
And now, we're at the next step, and the challenge is to find ways to create happiness, peace, and good care. I find myself reading lots of articles to help me get inside my loved one's brain to understand what's going on and to find ways to help. I find that I'm trying lots of ideas to see what brings a smile. So far, I've found that playing old time favorite musical films such as My Fair Lady and The Sound of Music brings peace. Also, puzzle making continues to be a pastime that is positive. Good children's books about topics that interest him are positive too. For example, a book of familiar prayers and one about a moose have been good. Bringing an ice cream results in happiness too. And simply being present and offering kind words and gentle touches helps. I asked him what he needed, and he told me he needed love. His mix of memory loss plus deep wisdom and understanding of big ideas is a strange mix similar to the mix of his strong body and now weaker mind.
I've never been completely satisfied as I travel this Alzheimer's journey, because I've always wanted my loved one back as I always knew him. I miss that independent, adventurous, curious guy who lived as if he would live forever. I've also found the role reversal tough--it's difficult to become a caregiver for someone who you've always thought about as your caregiver. But there's peace in knowing he's getting the care he needs, and having a clear direction in what my role is which is the role of caregiver who strives to bring peace and happiness to my loved one as much as I can in ways that I can.
I know that I'm not alone in this journey. I've watched and heard about many relatives and friends who have traveled this same path with their loved ones who suffered from a wide variety of illnesses. With almost every illness, there's not a sure path since every person experiences particular illnesses differently. Everyone's care journey includes a lot of trial-and-error, research, connections, and care paths. Everyone who desires to care for a loved one meets the challenge of finding the right time, activity, energy, and emotion for best possible care, and every caregiver also experiences the struggle of care-gone-wrong, weak energy, sadness, confusion, unknowing, anger, and frustration too. Naturally we want to know exactly what to do and have the resources we need to provide the best possible care at all times, but the reality is that in many ways caregiving is a hit-and-miss proposition, and the best we can hope for is to hit the mark of good care far more often than when we miss what our loved ones need.
This is a spiritual journey too. There are many ways to look at death and life after death. I don't write about that too often since I hold my spiritual and religious beliefs very privately, yet I do know that prayer and deep reflection greatly help this mysterious journey.
The journey's not over. There will be new chapters, but just taking the time to review this chapter's stages gives me energy to move forward in positive ways. I wish those on similar journeys the energy, wisdom, and resources they need to travel this road well. Onward.
