The Loving and Tough Choice of Hospice

One of the toughest times I recall was when I made the decision to sign papers for Hospice for my father.

He had been ill for a number of years – a slow decline at first, and then a rapid finish, it seemed to me, but my memory is blurred by love and sadness. At the time he was living in an assisted living facility with my Mom, receiving a lot of supportive services and trying desperately to keep a fair amount of time between Emergency Room visits as each one seemed to suck a chunk of time away from him.

My husband and I had taken the opportunity during summer to take some time away, just the two of us, for business and pleasure, after having spent nearly 5 years providing increasing levels of care for both of them. My siblings took time to visit from their own states and give us a reprieve. When our plane landed, I turned on my phone and the texts quickly pinged and populated my screen. I learned that both parents had made trips to the ER in the weekend before we landed back home, but that both were now back in their room, apparently safe.

The next day when I visited it was immediately clear that Dad was not all right. We made another trip to the hospital and by the end of a long day, arrangements had been made for me, as the one holding the Power of Attorney and Health Care Advocate status, had to make some decisions about Hospice.

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Bright Sides and Silver Linings

The Sandwich Generation squeeze is tough. There are no two ways about it. One of the kickers is that it tends to sneak up on us. We live in a busy world when raising children, even if they are older and able to take care of most of their own needs. Combine any level of childcare or teen and young adult “management” with working, and we have busy with an extra dollop of stress on our plate. So in talking with people in the Sandwich Generation, I often hear how it went from 0 to 60 in a heartbeat. They didn’t really see it coming. Mom fell and broke her hip. Dad had a stroke. I’ve written about how I wasn’t fully in tune with how quickly my mother’s “forgetfulness” went from what I thought was anxiety to a diagnosis of Alzheimer’s Disease. It is rather counter-intuitive that we find the signs of aging actually sneak up on us; after all, we are all aging every day. But it does. So yes, it is stressful.

But when we settle in, take care of the immediate needs, try to stabilize any crises, and finally come up for air, what do we find? Is it all doom and gloom? I am an optimistic pragmatist. I try to see the bright side in what is. Get the job done, but always look for the silver linings. In my own experience, and what I have heard from others, there are bright sides.

I’ve heard from people that relationships with parents often softened, deepened, and renewed. Strained sibling relationships often evolved and repaired to a significant extent. Spouses had opportunities to support and care for the caregiver. Children witnessed incredible acts of compassion, and themselves acted with immense love. Caregivers often report finding reserves of strength they didn’t know they had.

Often the bright sides and silver linings are small things with big impact. For me, I found a deepening relationship with my parents. My children loved times when my parents talked about their childhoods, my childhood, and so many funny stories. It became a ritual that we would ask one or both to tell a story when we were together. One time, we took a trip to where my Mother grew up and she lit up with such glee showing my kids her childhood house, her school, the church where she and my dad were married. She was completely delighted. It was wonderful to see how much long-term memory she retained, even if she couldn’t recall the conversation of 5 minutes ago.

My children often supported me, as well. Maybe because they were one generation away, and only knew my parents as older adults, they seemed to have deeper levels of patience for them. I recall one night in, particular; I had gotten crab for dinner because both of my folks loved crab. But my Dad no longer had the dexterity to crack the legs or bodies of the crab and dig for the sweet meat, a chore that had always been half the fun when I was a kid. But now I had to do it for him. He even had difficulty managing a fork, so I had to adjust to that. I became increasingly frustrated and distressed – mostly because I hated witnessing this sharp decline. Both of my kids stopped me and quietly intervened with words and actions. They provided both my father and me with compassion and support. It was these acts that later brought a flood of tears – acknowledging their maturity and gentleness. And looking at it from a distance, I could see a legacy of love from one generation to another. My children were learning more about compassion than I could have predicted.

Now, I wasn’t always great at seeing the bright sides and silver linings, but when I did, it gave me energy, insight, and enthusiasm for pushing on. Journaling about these times was especially helpful to me. I began with writing a nightly letter to God as a form of prayer. I started always with a gratitude list, then a list of special intentions for others, and then ended with asking for guidance and wisdom to see it when it showed itself to me. It helped me, too, when I asked for the best to come to those who I felt had angered or hurt me. It was easier to let them go when I wished them well, praying always for more joyful energy to show up in the world.

Coping is important for wellbeing. Coping is essential if we are to move through difficult times. And science actually shines a light on the physical and emotional benefits of coping strategies such as meditation, exercise, gratitude, and even compassion.

I had the pleasure of meeting Dr. David Hamilton (https://drdavidhamilton.com/) in 2017 at the first MindHeart Connect Conference in Gold Coast, Australia (http://www.mindheartconnect.com/). Hamilton is an organic chemist who spent four years developing drugs to combat cardiovascular disease and cancer. He was intrigued by the placebo effect and its power – and the mind’s capacity – to heal the body. He has written many books and lectures on the topic. He sees compassion as not simply good for the one cared for, but as a healing process for the caregiver as well. Hamilton notes that consistent, small acts of compassion are quite powerful. Our compassionate acts need not be grand gestures – the daily little things we do to care for others, also heals us.

Our bodies produce oxytocin, often called the “cuddle hormone,” when we engage in pleasing social situations and acts of compassion. Mothers produce oxytocin during labor and lactation. Men produce oxytocin as well and it is thought to promote social awareness. 

So we can focus on the chaos, the sadness, the added chores, or stop to consider what gifts we are given in this time. That is up to us.

This speaks to the power of intention, mindfulness, and self-awareness. It is easy to get caught up in feelings of overwhelm. But in taking a long view, pulling the lens out a bit to see the big picture, I know I have found that accepting the situation I cannot change – that caregiving for an aging parent will ultimately mean dealing with their death – helped me to focus on the quality of their lives, the quality of my life, and the quality of my children’s and spouse’s lives.

How do you care for yourself during these times of immense stress? Have you found bright sides or silver linings? Have you experienced the power of compassion?

I invite you to share. Thanks for reading!

Christy

Denial

“Christy, I think your Mom is having memory problems. Have you noticed?” my Aunt asks me. A lot of people have been asking me this one lately. No, I tell them. It’s anxiety. She is just so worried about my Dad. She worries all the time and is afraid to leave him for very long, so she cancels things she used to do. She has been cancelling book club, volunteering, various and sundry social engagements. But the question nags at me. Is it anxiety or is something else going on?

My Mom tells me, “I’m afraid I am more like my mother than my father!” She refers to her mother who died the day before her 80th birthday, who probably had some form of dementia for years. She would walk around her home with a burning cigarette with a 5-inch ash at the end, with my grandfather following behind with an ashtray trying to keep the house from burning down. Her father lived nearly another 20 years and died at age 99. His memory was as clear as a bell, although he did tell me the decades seemed to blur together. My Mom worries a lot about my Dad, but she worries a lot about that, too. She worries about her memory. Should I worry, too?

I’m a school psychologist with a background in counseling and various other things. I’ve worked with adults and children. I’ve worked with people with mental illness. I know anxiety when I see it, I tell myself. This is anxiety. But my conscience gnaws at me. Is this denial on my part? Sometimes we are most dangerous when we think we know things.

I visit my parents and stop to check that my Dad’s pillbox is full for the week. I’ve been checking this recently because my Mom tells me Dad messes it up after she fills it. He is on a lot of medication. I look and sure enough, pills have been moved and everything is a jumble.

“Who changed everything?” I ask them both. I sound like the 3rd grade teacher my mother was for 25 years, interrogating the 9 year olds about the messy room or missing markers. This bugs the crap out of my Dad, who huffs. “She keeps messing with it,” he tattles. She is ratted out again and looks aghast and indignant. Seriously – is this what it has come to? I pull back from my frustration about having two more “children” to care for. Eventually, I fix the pills and tape a sticky note to the front, “Do not move, remove or add any pills until you call Christy first”. Yeah – that’ll work.

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