Alzheimer’s San Diego is powered by a team of incredible social workers. This feature, Notes from a Social Worker, will give you a glimpse into their thoughts and feelings as they work with families impacted by dementia. First, we’ll hear from Rebecca McDaniel, MSW, who leads Coping With Caregiving and our Support & Discussion Groups.

By Rebecca McDaniel, MSW

“What’s happening to my husband?”

I heard the question again, maybe for the 100^th time. Husband could be replaced with wife, sister, father, mother…even son or daughter.

I began to feel deep dread in the pit of my stomach and my anxiety rise because I knew I could not give a straight answer to the question. Alzheimer’s and other dementias are so unpredictable and complex – it can be a struggle to even get a diagnosis. As the support group full of caregivers looked at me, hungry for some clarity, I answered as best I could.

“Parts of his brain are being attacked by plaques and tangles. With this disease, without a cure…his brain is losing,” I try to explain. “But other than that – we don’t know. Science and medicine haven’t given us the tools we need to understand more than that. We just don’t know.”

Silence.

Most people walk around life trying to figure things out. How does this new phone work? How can I make the most out of my day? How can I avoid the biggest amount of traffic? We’re always searching for ways to be successful. We have wins, we have accomplishments and we resolve things – the person or moment that is bothering or hurting us.

The problem with this awful disease is there are no winners in the end, and you cannot make it stop. So we walk through the dementia journey together, feeling our way through, sharing tidbits, lessons, resources and emotions. Through these conversations and discussions in support groups, we work our way toward some answers. Yes, if you try to remind someone with dementia of something, you will most inevitably stick your foot in your mouth. Yes, if you do put something “safely” away you may or may not find it again. Yes, you never know what the day is going to bring…there’s always a “what if” around the corner. Yes, you will rack your brain wondering, “Is this normal, am I normal?” Yes, you will find yourself in awkward and precarious situations that make you cringe in the moment and then – unbelievably – you can laugh at the next day.

All of these confirm that the person we love is changing…even though we hope we will continue to be able to recognize them as this disease progresses. But ohhh there are also beautiful moments: figuring out a way to modify the laundry so the person can still be involved, finding new friends that understand and get it, learning new things about the person you’ve known for most of your life. Yes – you will have days where you lose your patience and nothing went right, but the day after is unknown and could be one of those really special days where you share a joke, or hold hands like old times. The thing about this disease is you never know – and that is what makes Alzheimer’s the worst disease. What the person you love did one day, they may not be able to do the next. What you see as a glimmer of hope is quickly dashed in the very next moment because they don’t remember the stroll you shared that morning. The back-and-forth emotional rollercoaster is what I see every day as a social worker at Alzheimer’s San Diego. I see grief and loss – and I see resilience and a will to fight in the very next beat.

I wish I could share all the take-your-breath-away moments I have witnessed leading support groups over the last three years. They would make you feel less sorry for the caregivers. Instead, you’d feel more respect, pride, love, and sheer disbelief about how incredible these people are – not because they have to be, but because they want to be and learn to be. I drive home sometimes in tears and sometimes in utter gratitude and joy for the opportunity that working and learning alongside caregivers has had on my life. Each one has made a stitch on my heart.

Alzheimer’s San Diego is proud to be a local nonprofit. We’re funded by the community, for the community. Want to help one of the 84,000+ people living with dementia in San Diego County? Click here to change a life.