After my Skype call yesterday with my dad, the head of the dementia unit called me and gently, compassionately, guided me to the reality that Dad may soon enter hospice care.
In the midst of a swirl of emotions, I am grateful that, long ago, he prepared, pragmatically and characteristically, the paperwork to help us meet his wishes for his care. And it’s reminding me of how all of us can, should, and need to do the same
We can’t predict when hospice will be needed, of course, and we hope it doesn’t happen for a long time. Dad has lived in Harbor Care, the memory care unit of Putnam Farm, for almost five years. Alzheimer’s is nothing but a gradual, predictable descent. Those of us who love people who have dementia must “join them on the journey,” as the saying goes: agreeing with comments that make no sense, trying to answer questions that have no verb and no context, listening to and watching our loved one struggle for words, for balance, for meaning.
My dad is 86, in vigorous physical health. He has most of his hair, and much of it is not grey. If you saw him, you wouldn’t think he was ill.
If you talked with Dad for only a few minutes, you’d know right away. “Word salad” is what you’d hear, with (maybe) intermittent engagement about music, or sports, or his faith. Yesterday, during our Skype call, he showed me the photo I had sent him of me with my granddaughter (his great-granddaughter). In the 20-minute conversation, he showed the photo to me six or seven times. He loves us very much, and that was one way, his way now, of showing that.
When Beth, the director of Putnam Farm’s memory impairment unit, called me later in the day, she asked how Dad had seemed to me. “Fine,” I said. “The usual. A little tired.”
These conversations are treasured, but they are a big effort for Dad, who does his best to cover up the vagaries of memory loss.
I told her, “I’m not sure if he really knew me today.”
He asked me if I had finished the reports on time for the aeronautics department. Forty years ago, he worked for General Electric, as a purchasing manager for airplane parts. I told him yes, they were in on time, and he seemed happy to hear that.
Beth listened thoughtfully to what I said and didn’t say. She’s one of those people with a gift for deep listening, which is perhaps why she’s so effective with and dedicated to Alzheimer’s patients.
“This afternoon, your dad had trouble walking after he went to entertainment. He couldn’t move his left leg.”
I mulled that a bit. Maybe Dad had a small stroke? One of the puzzles of dementia is the inability to neatly categorize the types. Dad may have vascular dementia, and may have experienced lots of small strokes. Maybe one yesterday, after the entertainment.
Beth said Dad has really slowed down, slept a lot, and is having increased difficulty transitioning out of his room. He wants to stay in his room as much as possible. He’s needed an aide to help with showers and grooming for a while. Dementia can mean not knowing what steps are in what order to taking a shower or getting dressed.
“So, in the next few months, we may want to move him into hospice care.”
I have nothing but admiration for and gratitude to hospice workers who,13 years ago, helped my mom on her way to dying from lung cancer (despite never having smoked). Hearing Beth’s words opened the fragile scar that is the memory of Mom’s vibrant life and painful, cruel illness. Hospice helped immeasurably, with medications and kindness. My dad was Mom’s attentive, organized caregiver, keeping lists of the dosages as he had kept detailed records of heating oil deliveries, his Bradford Plate collection, and the slides from their trip to Europe in 1964. He conferred with the hospice nurses. He helped Mom wash her hair, use the oxygen tanks, and say the words of prayers together when she had little breath but much belief. They had been married 50 years in 2003 when Mom died at home, Dad by her side, on Christmas Day.
From the day Dad moved into Putnam Farm in 2011, the care he’s received has been exemplary. I exhaled with great relief when Beth said the hospice care would happen there too, where Dad has grown familiar and content, where he knows his room and bed and window out to the big maple tree.
All good, all good: the music therapy, the massage therapy, the aides and helpers that can come with hospice care. I nodded and felt good about the high level of care, while I wept stiffly and awkwardly. I’ve been grieving the slow loss of my dad for many years. Sometimes the grief jumps right to the surface.
I thanked Beth for talking with me. Really, what a blessing—to have someone genuinely willing and able to guide me on this new unavoidable path, giving me accurate, helpful information, concerned for Dad and for me. It could not have been an easy phone call for her to make, and I am so grateful.
I am also grateful that my organized, pragmatic dad gave me power of attorney in 2007. He updated his will, his health care directives, and his wishes for his funeral service. I am his health care proxy, and I know exactly what mattered to Dad when he was cogent and healthy. What a gift.
What a sad, sobering, useful, blessed, unwanted, valuable, vital gift.
Dad has shared so much with me: his love of Ireland, his love of words and literature, his deep appreciation of Hershey’s chocolates. He has given nothing but love to me, to his four grandchildren, and to his great-granddaughter. He will have a rich legacy, in terms of his dedication to his family, his church, and his community.
One aspect of that legacy that I want to pass on now, while Dad is alive, is to urge you to do the hard work of preparing your own paperwork. Talk with your spouse/partner/parents about health care directives, health care proxies, wills, and powers of attorney. Get the documents put together and hope you won’t have to use them for a long time. You probably won’t.
I’ve been fortunate to have my dad with me for so long, and I hope he is with us for a long time to come. I have peace knowing that, when the time comes, I know his wishes. I know where the documents are. I will not be floundering around trying to find stuff and wishing that I knew what he wanted so that I could honor him and his wishes.
My dad would be pleased that I am making these suggestions, drawing on his example. As he said when he encouraged me to make the honor roll, or learn a new skill, or raise my kids: “It may be hard, Maureen, but it’s worth it.” Another way of looking at it is through the lens of Dad’s faith: “Peace I leave with you; my peace I give to you. Not as the world gives do I give it to you. Do not let your hearts be troubled or afraid.”
Go talk with those you love and those who love you, pull the paperwork together, put it in a safe place, and be at peace with that. Every day is a gift.
Info on health care directives/living wills from The Mayo Clinic.