The caregiver of a loved one is affected hardest by their death. Until a person has served in that role, they don’t understand the enormous weight they shoulder. Reflecting on my own personal experience, the years spent negotiating the care for my loved ones were full of blessings, challenges, and loneliness. Taking care of someone with deteriorating physical and mental capabilities requires an immense amount of time, physical and emotional energy. Complete devotion and attention to their needs results in the caregiver neglecting themselves and their own needs. In many ways, the care provider stops “living” and transitions to “existing” in order to cope with the non-stop stress and responsibility.

I was blessed to be the caregiver for both of my parents during many years prior to their passing. Mom died August 28, 2019, though her mind departed her body several years earlier. During the 4 years prior to her passing, I made several trips weekly, sometimes daily, to her memory care unit and later to the skilled care facility. This was while I was living with and taking care of my father, who had multiple complex medical and surgical needs.

The multi-tasking required to schedule and drive Dad to appointments, manage dozens of pills daily, shop for, cook and serve nutritionally rich but dietary restrictive meals, was tough. Plus managing Mom’s daily care and enrichment with her nurses, being at Mom’s facility for lunch to feed her because they were short on staff, bringing her laundry home to clean and return twice weekly so it wouldn’t get lost amongst the other residents……all while trying to help my Daddy enjoy his life, was more than a full time job.

As my beloved parent’s caregiver, I lost myself to make sure their needs were met.

Friends often stop calling caregivers because they “can’t meet up for lunch or coffee.” Caregivers decline invites because they have to make sure the person they are caring for has their needs met. Often the person requiring assistance can’t manage their basic needs without help or supervision. In my personal situation, my Dad couldn’t get items out of the fridge by himself (too weak) and he was unable to operate the microwave. Anytime he was left alone there was a huge fall risk, even though he had a walker. He relied on me….for EVERYTHING, just like a young child.

When friends do call, caregivers don’t feel they much to contribute to a conversation. Instead of discussing their long weekend at the beach or planning for their upcoming Caribbean cruise like their friends, they feel like the “downer” when asked “what you’ve been up to?” In my case, activities I could share might include calling EMS to the house for Dad resulting in hospital transport (this happened every few weeks), listening to the talented guitarist who entertained patients in the cancer center during Dad’s infusions, or my challenging search for sheepskin wraps for the arms of Mom’s wheelchair. Nobody was interested in hearing this information. It sounded so sad…..but it was my life!

However, I didn’t feel depressed. I was coping the best I could at the time. And I focused on the privilege it was to be there for my parents when they needed me the most. I have my fiance and a couple of true friends who stuck by my side throughout all the difficult times, and it made us even closer. From most people, I would hear “I am so sorry you are going through this” or “I wish you could have a vacation….you need it”.

Fourteen months after Mom passed, I delivered the message at Dad’s celebration of life. The family and friends who had come to honor Dad were gathered on a covered drive in front of the church. The chairs were spaced several feet apart, socially distanced, because the Covid pandemic restriction limiting gatherings and indoor crowds was in effect. As I stood on the church steps sharing my thoughts about Daddy, the Amtrak train came barreling down the tracks across the road from the church. With railroad crossings close by, the blaring whistle started….WHooo-WHOOOOOOOOOOooooo. No one could hear my voice over the roar of the train, so I paused, mid sentence. I waited for the horn to stop blowing and the train to pass. Surprisingly, I could see some folks shifting in their seats, looking around, as if they didn’t quite know what I would do because of my “pause”.  But after the noise faded, I simply started again.

One of the things that hit hard immediately after the death of each of my parents was how I lost my direction. Wandering around, taking care of necessary funeral and burial arrangements, dealing with legal necessities….somewhat in a slow-motion, suspended state, I felt I’d lost my purpose. My previous daily jam-packed schedule was suddenly almost empty. I felt I temporarily paused, just as I did during Dad’s service, while I waited for the train to pass. But the rest of the world barely noticed.. Everything else went on. Everyone else went about their business. They went to work, shopped for groceries, walked their dogs, engaging in normal, daily life.

For the first time in years I no longer had to count pills, or adjust diuretics based on Dad’s weight and pulmonary artery pressure reading every morning. No more hospital beds, countless blood tests, or oxygen tubing. Mom and Dad were both free from pain and could finally rest. But I was completely lost. I began a slow journey of rediscovering myself without my beloved parents. Life without caregiving.

Often people don’t know what to say to someone who’s just lost the one they were completely devoted to, whether it is a parent, child or spouse. Only people who have experienced the total commitment required of a caregiver can truly understand the loss of purpose and direction when that responsibility evaporates in the blink of an eye. It’s hard to comprehend the inexplicable void of walking into a room where you used to sit together and watch TV, or seeing their clothes hanging in their closet, never to be worn again.

A week after my Dad passed, I had a phone call from someone who asked “Are you looking for a job yet?” and “Have you gotten rid of all his clothes?” To support someone who’s been a caregiver and experienced loss, just being there for them is enough, without judgement or unsolicited advice.  They need time to acknowledge, process, digest, and begin adjusting to life without caring for their loved one. Give them time.