By: Bethmarie Fahey
For the past year, I’ve been writing about caring for my elderly mother with Alzheimer’s. I’ve written pages on the effects of the disease, how it stole the vibrant, fun-loving person I knew and left behind a stranger.
My world revolved around her current state of mind and what I needed to do to protect her from harm. My time wasn’t my own. My actions were determined by her needs. My decisions were based on what was best for her. I don’t begrudge the fact that she was so needy. I don’t regret putting my life on hold so she could continue to live at home. She was my mother and I loved her dearly.
We recently buried her cremated remains in the family plot. She is in between her baby brother Dani, who was killed in Vietnam, and her mother. One by one we scattered white rose petals into the grave while a cousin played “Oh Danny Boy” on the violin. With tears flowing, we said goodbye.
Later, we drove family to the airport and hugged goodbye, promising to get together again soon. My brother, his wife and I returned to the house exhausted. We shuffled around, uncertain about what to do next. But Monday came and life went back to normal – at least for my brother and sister-in-law. Back to work, back to reality.
But now what do I do? Caring for my mom had been my work for the past few years. Last year, I retired to devote more time to her. Now time stretches out in front of me, empty, devoid of purpose or direction. I’m staring at a blank canvas and wondering, what now?
Most of us are familiar with the five stages of grief outlined by Swiss-American psychiatrist Elisabeth Kübler-Ross in her 1969 book On Death and Dying. Dr. Kubler-Ross’ description of the process experienced by both dying patients and their loved ones was based on her firsthand observations working with terminally ill patients. She identified five stages as:
In later years she came to understand that this wasn’t a linear and predictable process. Instead, both patients and those who were close to them often moved back and forth between the stages with each twist and turn in the disease’s progression. Anyone who is or was a caregiver for someone with a long-term illness like cancer or Alzheimer’s knows that it is possible to cycle through all five stages in one day, or even one hour, as different aspects of the disease manifest themselves. It’s more like a roller coaster in the dark, never able to anticipate the next steep drop or hairpin curve.
When death ultimately comes, you find yourself stepping off the roller coaster, dizzy with the relief of standing on solid ground again and looking around, searching for the exit. You find yourself someplace new and unknown. I propose that you are about to enter a whole new set of stages:
- Burying yourself in the logistics of death
- Finding Balance
- Finding a new purpose
When death comes to an Alzheimer’s patient, it’s not a shock. We’ve been anticipating it for a while. In some ways we’ve been eagerly awaiting it. The person we loved left us long ago. The person laying in that hospital bed is not the mother, wife, father, or husband we loved and cherished. We’ve seen how they struggled to hold onto reality and failed. We long ago grieved our loss. That’s not to say we aren’t sad, but it’s layered with relief that they are out of their misery and at peace. Depending on individual religious and spiritual beliefs, we may feel a sense of joy that they are now reunited with deceased loved ones or in the comforting embrace of a loving deity.
The other part of the relief is the release from the burden of care. For months and maybe even years, our own lives have been put on hold to care for them. We are now free to do things lost to us for a long time.
I got a call from a cousin shortly after mom passed inviting me to fly down to Florida to join her and her family at their condo. It was a last-minute, spur of the moment opportunity. I hung up the phone and my first impulse was to check the shared calendar my brother, sister-in-law and I used to coordinate care for mom. I suddenly realized that I didn’t need to check anymore. It was a relief to be able to just say yes and book my ticket.
Guilt often follows relief. It is natural to feel guilty that we aren’t weeping and wailing. As I made phone calls to relatives to tell them about mom’s passing, I could hear the sadness in their voices as many fought back tears. They all asked how I was doing, was I holding up okay? The guilt seeped in as I realized that I was fine. I wasn’t falling apart. I asked myself, why wasn’t I devastated?
Looking back at the five stages of grief identified by Dr. Kubler-Ross, I realized I had gone through all of them over and over in the past four years. I had already denied that she was failing. I had gotten angry at the universe for doing this to her. She didn’t deserve it. I didn’t deserve it. I had bargained with her, with myself and with the medical professionals to find ways to mitigate the progression of the disease, and ultimately to make her comfortable. I swallowed my depression at the narrowness of our lives as we watched her fade further and further away. I swallowed it in comfort food and nightly cocktails. I had finally accepted that this was the life I was living. I learned to roll with it, to seek help from support groups, to ask for more assistance from family, and to allow myself to think about a future when I could move on.
I had to let go of the guilt. To understand that the lack of tears didn’t mean that I didn’t love her, but that I had already cried myself dry.
Burying yourself in the logistics of death:
The death of a loved one brings a whole new set of responsibilities, especially if you are the primary executor of their estate. Death has a checklist of tasks to complete. One way to cope is to use that checklist to order your time. You replace one set of responsibilities for another. You may not be caring for the person anymore, but now you are the caregiver for their effects, the details of death.
It amazed me to realize just how many details there are to death. Starting with the death itself there is a long list of questions to answer: cremation or full burial, service now or later, where to bury them, religious service or non-religious memorial, did the deceased have a preference or are the decisions up to you, who else needs to be involved?
I found my years of being a project manager kicked in. My lifeline was a spreadsheet with a multitude of tasks lined up in deadline order, waiting for my checkmark to indicate what was done.
After the burial and memorial service, my checklist of to-dos was done. There was nothing I needed to do, no deadline to meet. At this point, I think people go in one of two directions. One is isolation. It is so easy to just burrow in and lose yourself in solitude. In part because you need the rest. That is real. You’ve been on an adrenaline rush for months and your body and brain need to slow down and recoup. The challenge is to prevent that need to just step back from the world from becoming permanent. You need to find a way back out to your family and friends.
The other option is to jump with both feet into the deep end and throw yourself into a frenzy of action. This was my choice. I jumped at any invitation to go somewhere, do something. Meet for lunch? Sure, just tell me where and when. Maybe a concert? Absolutely, don’t even care who’s performing. I checked out the adult education catalog at the local community college and signed up for a number of classes from French to the History of the Roaring 20s. I found an exercise class at the Y.
Doing things with family and friends, taking some fun classes to expand your world and getting more exercise are all healthy activities. Desperately filling your calendar so you don’t have to think about what to do next in life is not.
Finding a New Purpose
And here we are again staring at a blank canvas, or in my case, a blank page on my computer screen. This stage is the most exciting and the most terrifying, all at the same time. Depending where you are in life, some of this picture may already be filled in. If you still have young children, you can now devote more time and energy to being a mom. If you still work full time, you can refocus attention on your career. If you have a spouse, you can reconnect and find enjoyment with each other. Basically, you can take the time, energy and emotions that were diverted to caring for your loved one and invest it back into the other important people and aspects of your life. If you’re like me and those options don’t apply, you search for a new purpose, a new direction.
Ask yourself – what is my passion? What did you fantasize about doing when you didn’t have the time or freedom to do it? When you could finally collapse into bed at night exhausted emotionally and physically from your caregiving duties, what was the dream that lulled you to sleep?
Find your passion and it will lead you to your purpose. I wish I could say this is easy. It’s not. It means being honest with yourself about what you care about beyond your loved one. It’s about learning to check in with yourself instead of your ailing spouse or parent. It’s about putting yourself first for a change.
Before becoming a full-time caregiver, I was a full-time professional in the training and development world. That life is gone. I had to ask myself, what is it that I love – what do I want to do with my life? The answer came back – be a writer. I’m exploring that path to see where it might lead me.
Your answer is going to be different, unique to you. But finding that passion and purpose is the way to create life after death. It’s about moving on with a full heart and positive anticipation of what’s ahead. It’s about honoring the memory of the deceased loved one by living your life fully.