Written by Amy Sobrino, LMSW, program services coordinator at Memory Care Home Solutions
When I think of this month’s theme of ‘Age out Loud,’ I think of bravery, courage, and challenging the status quo. There are countless examples of older adults ‘stepping outside’ of their comfort zone to challenge ageism.
In my work with families caring for a loved one living with cognitive impairment, I see this courage comes in the form of embracing change and fighting to keep the love in a relationship alive. From the outside, this might not look particularly brave or daring, but it requires a huge amount of determination and courage.
With a progressive dementia, such as Alzheimer’s disease, the way a person can show or reciprocate acts of love changes and diminishes throughout the disease process. This challenges caregivers, especially in spousal relationships, and can often change their relationship from one of partnership to one of satisfying basic needs as a caregiver. In a study by Boylstein & Hayes, care partners of spouses with dementia reported challenges in retaining a sense of closeness in their marriage, which caused significant disruptions within their relationship. The question I hear from caregivers is often this: How do I continue to love someone, as the person and relationship I’ve known my entire life is changing before my eyes?
One of my clients who asked me this question was John*, who supports and cares for his wife Betty*. Betty was diagnosed several years ago with early-onset Alzheimer’s disease. Only in their 50s, John has to balance working a full-time job with meeting Betty’s care needs. As her Alzheimer’s disease has progressed, Betty now needs complete supervision and assistance with her activities of daily living (toileting, dressing, bathing, etc.). The first time I met John, he was struggling. He was finding it challenging to hire a consistent caregiver who could help Betty while he went to work. Beyond the practical struggles of caregiving, he was also feeling that the love of his life, with whom he had built a home and raised three children, was gone. In the midst of feeling the grittiness of providing total care for someone, John was struggling to find any joy and meaning in their marriage.
Over the course of the year I coached and supported John, I saw a number of changes. First, we were able to find an adult day program for Betty to attend while John went to work. This program made a noticeable difference in Betty’s quality of life, as well as peace of mind for John. Every morning when John would drop her off, he said that the moment they would turn the corner and the adult day program building would come into view, Betty started beaming and showing excitement. John felt at ease that Betty was enjoying her day, and that, in turn, caused him to really think about what brings them joy. The last time I spoke with John, he was telling me how his entire mindset has changed. When I first began working with the couple, John was ready for it (the Alzheimer’s) to end. He was tired of the suffering, and could not find any happiness in their lives. Now, he has made the choice to see the ways that their love and marriage are alive, although very different from their pre-Alzheimer’s disease lives.
For John and Betty, ‘aging out loud’ meant finding love again in their lives as Alzheimer’s raged on. As a social worker, it’s humbling to see the strength and power of my clients’ love for each other. Regardless of the challenges and changes that Alzheimer’s disease has brought into their lives, these families choose to focus on their love and how to show it each and every day. Sometimes the courage to continue to age in face of disease and hardship is a soft bravery in keeping love alive.
For further reading on this topic, check out Keeping Love Alive As Memories Fade: The 5 Love Languages and the Alzheimer’s Journey. The authors Barr, Shaw, & Chapman share strategies specific for families in retaining emotional intimacy and relationship throughout Alzheimer’s disease.
If you are a caregiver and are interested in learning more about Memory Care Home Solutions, please call 314-645-6247 or visit www.memorycarehs.org.
*Names changed to protect privacy