When my husband and I were newlyweds and first-time home-owners, we faced numerous questions associated with making our new house a home: Should we replace the dated kitchen cabinets? What color paint would look good in the living room? Should the window coverings be blinds, shades, or curtains?
As we waded through the myriad of questions, I felt comforted knowing that we were working as a team. The pattern of give and take we had developed over the course of our relationship served us well, and the overwhelming task of setting up a household felt a little bit less daunting.
When we were almost finished personalizing our new home, my husband decided that he wanted us each to tackle one decision solo -- he would choose the color of paint for our home office, and he wanted me to choose the paint color for our guest bedroom.... ALONE.
I recall standing in the paint section of The Home Depot amidst thousands of sample paint colors, feeling overwhelmed by the weight of making this decision all by myself. I tried reaching out to Michael for some feedback, but he was insistent. I needed to make this decision entirely by myself.
In that moment -- struggling with the admittedly trivial question of what color to paint a guest bedroom -- it hit me. This lonely, daunting feeling I was experiencing was a smaller version what the caregivers in the spousal support group I facilitated at the Long Island Alzheimer's Foundation (LIAF) experienced on a much greater scale every single day. While their spouses were still physically there, they could no longer serve as a sounding board for life's decisions, both mundane and consequential. The patterns of give and take that they had developed over their relationships -- many spanning a half-century or more -- no longer served them when faced with daily decisions and challenging life choices.
I shared this insight with members of a caregiver support group at LIAF, and was met with nods of recognition. Over the course of many group sessions, they shared their angst at having to "think for two" and make decisions without the level of input and insight that they had come to expect from their spouse over decades of marriage. While my "struggle" had dealt with the inconsequential question of paint color, theirs often involved significant choices such as how to allocate financial resources for retirement, when to activate a long-term care insurance policy, and whether to seek out a residential care option.
Early on, some struggled with how to keep their spouses feeling involved with complex decisions, the intricacies of which they could no longer fully comprehend.
Later in the disease, many grappled with how to make end of life decisions for a spouse who could no longer communicate, such as whether to insert a feeding tube, continue or discontinue medications, or initiate Hospice care.
They were faced with the most consequential of life's decisions, without the benefit of the partner and sounding board they'd had for their entire adult lives.
One of the cruelties of Alzheimer's disease is that as its progression requires the caregiver to cope with increased responsibilities and losses, it also gradually robs them of the partnership they relied upon when facing previous life challenges. Not only is the caregiver facing one of the most physically, mentally, and emotionally draining chapters of his/her life, he or she is doing so in the context of a relationship whose familiar patterns of cooperation and support are no longer readily accessible.
This realization also underscores the value of caregiver support groups. While group members grieve the changes that Alzheimer's disease has brought to their lives and relationships, they find that they are no longer quite so alone in facing life's daily challenges, losses and decisions. They are part of a new community of men and women who intuitively understand their struggle. They find that amidst the pain of loss, there is also the beauty of friendship.
For information on caregiver support groups in your community, reach out to the Alzheimer's Association at 1-800-272-3900, or the Alzheimer's Foundation of America at 1-866-232-8484. On Long Island, call LIAF at (516) 767-6856 or the Mid-Island Y JCC at (516) 822-3535.
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