Something about this quiet, gentle man intrigued me. I saw unconventional in his grey pony tail, I saw intelligence in his perceptive questions, but my overwhelming impression was a penetrating sadness. His wife of many years had moved to our floor because her dementia meant it wasn’t safe for her to live alone with him. As he brought down her favourite comforter, pictures she liked and “her” chair from their apartment upstairs, his struggle with the transition was evident. This was never more apparent than on the day of his first care conference.
The initial care conference, held a few weeks after a resident moves into care, is the family’s chance to meet with the doctor, nurse, physiotherapist, chaplain, dietary department and advocate. Through questions and discussion, the team gets to know the resident better, and a plan of care is established.
We’d covered a lot of ground. He’d given us valuable input as to his wife’s character and what activities gave her pleasure. A new patient for the doctor, he learned her medical history. Each of us in the room had a better idea how to serve this lady and her husband. For though he wouldn’t be living with us, we were serving him as well.
As an hour drew to a close, her husband turned to me and said, “I have just one more question. Is she going to get better?”
The room seemed to reverberate as the question bounced off the walls. How long had he held some hope, however faint, that this would pass?
I looked into his soft blue eyes and said, “No, she’s not.”
His look told me he’d known but needed to hear the words. “Is she going to get worse?”
Every pair of eyes turned to me and the silence seemed to smother us. I took a deep breath, met his gaze and said, “Yes, she will get worse.”
He cast his eyes to the floor and replied, “Thank you for your honesty.”
“The thing is,” I went on, “we believe that people with dementia can live full, even happy lives. We want her to have purpose and meaning in her days. To attend activities she enjoys and to feel as if she is at home here. Our goal is that she will have a quality of life and feel fulfilled, even in the latter stages of dementia. The staff care about her as a person, and the life she lives is important to all of us. She’s in a good place.”
“And,” I added, “You are a couple. You are welcome here at any time. We want you to join her whenever you like. We are here for both of you.”
His eyes returned to mine as what I said resonated with him. “That’s reassuring.”
That gentleman made the transition. Some days were difficult, and I’m sure he went back to his apartment and cried at times. But one day several weeks later I passed his wife’s room and realized he’d found a way to make it work. The two of them were cuddled on her bed, having an afternoon nap. She wasn’t a diagnosis or a disease, she was his wife and they were at peace together in that moment.
Several years ago, I sat in a full auditorium listening to a man with Alzheimer’s tell of his journey. It wasn’t an easy one. His wife left him and wouldn’t even let him keep the dog. His children didn’t understand, and aside from the loving support of the Eden Alternative crowd, he stood alone. Alone, but bravely, he said, “I have Alzheimer’s, but it doesn’t have me.”
As care partners, we can enter an overwhelmed mindset. Bad things happen. Sometimes we are torn to the core by the changes we see. It hurts! But know this–the person you love is still there. They can live, and love and make a difference and add to your life. Don’t give the disease more power than it should have.
Love them, laugh with them, appreciate them for who they are today. Don’t let Alzheimer’s–or any disease–have your loved one.
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This one made me cry, Ann. Beautiful!
That is the highest praise, Tracy.