Living With Dying articles
By Leah Carey
March 14, 2017
Three caregivers recently sat around our conference table to talk about the stress and exhaustion that goes with being a primary caregiver.
I agreed to use only their first names and not offer any specific details about them or their loved ones.
Linda’s husband had dementia. She was his primary caregiver until he passed away almost two years ago. Linda had previously also provided care for her mother with Alzheimer’s.
Linda had spent 25 years in a government job, but as her husband’s dementia progressed she had to retire.
“I loved my job. But that just seemed to be the thing to do,” she said. “As things became needier for him, it was going to become unsafe. I had to get done … I felt terrible giving that up. It was a big loss for me. That was part of who I was.”
But giving up her job didn’t mean that her stress levels went down.
“You’re living in a nightmare and you’re not sleeping … You’re not sleeping at night and you’re constantly listening,” she said. “In the winter it was okay, but in the summer running a fan, you can’t have anything for noise because then you can’t hear something.”
She arranged for someone to come in on Tuesdays so she could go out to get shopping and errands done. “It was Tuesday, or it didn’t get done,” she said.
Linda’s children became worried about her health, asking her if she was sleeping and whether she was okay. Linda said, with rueful laughter, “I thought I was doing extremely well … but you’re trying to adjust and how it is one day isn’t how it is the next day.”
That level of uncertainty made it hard for her to accept her daughter’s offer of help. “She works full time, so I tried to be very careful,” she said. “Because not knowing what was coming … I didn’t want to abuse the privilege [of calling her].”
Linda’s family all have advance directives in place for the end of life, but even so there were questions and decisions that had to be made.
“Somebody calls you to say, ‘Well we know what you said, but now we’re calling to see if you wanted to change your mind about something,’” she recalled. “It just added another layer of anguish. You’re following their wishes, that’s what you want to do. But it’s killing you.”
Anne moved back to the Northeast Kingdom when both of her parents needed help: her mother developed dementia after a stroke in 2009. Her father had been the primary caregiver until his health started failing. He was in decline for two years before passing in 2014. Her mother is still alive.
Before her father’s death, Anne became his source of comfort because his wife was no longer present.
“The exhaustion part of it for me was that my dad only wanted me,” she said. “He’d call me in the night, ‘I’m scared, will you sit with me?’ Sure dad.”
“He’d be looking for me. His eyes, no matter where I was in the room, he’d be looking for me because I was like his safety. And that was kind of – that was tiring. It was exhausting to be the one and the only one. No other comfort,” she continued.
Now that her father is gone, her mother takes all of Anne’s attention.
“If she’s sitting in a chair and you’re just talking to her, you might not know that she ever had anything wrong,” Anne said. “The frustration mostly is with the million questions … It’s like “Who’s on First,” the Abbott and Costello thing. You feel like you’re losing your sh** sometimes. For me, that part is exhausting.”
For a while, Anne had support from her siblings, but one by one they had to drop out for various reasons, leaving her as the sole caregiver. “It’s like being a hamster on a wheel,” she said. “You can’t jump off.”
In order to keep her health insurance, she had been working three and a half 10-hour days in another part of the state, then returning to the NEK for the other three and a half days a week to care for her parents. “It just trashed me … The trade off is you’re paying somebody so you can go and make some money. It doesn’t even make sense.”
Now she has given up her job and lives with her mother full-time. The stress got so bad that Anne had her own health crisis at the end of last year. “It’s been a very, very tight balance financially,” she said.
Ann cared for her long-time partner for five years (we’ll call her Kathy) through dementia until her passing last fall.
“It was long, but it was incremental,” she said. “We didn’t even recognize it to start with.”
“I had a very full life and then gradually over the years, I dropped off and dropped off. So by the last year, I was really doing nothing of my own work or anything but just being present,” Ann continued.
While Ann appears to be more at peace with her caregiving experience than the rest, there were plenty of frustrations.
She was trying to do everything on her own, but eventually it became too much. “My health began to show with stress. I had atrial fibrillation … You just don’t have the energy. It’s just not there. You can will it, but it doesn’t appear.”
The health issue forced her to look elsewhere for support: she gathered a support group of four people with whom she had weekly phone calls. “I got a caregiver, and then in the end we had three,” she said. “The financial picture is the hardest one. But I just decided that Kathy wanted to die at home, so I’d just use the savings and then sort it out afterwards.”
She had challenges communicating with home health workers because “they were always changing everybody.” With constant personnel changes “you could never get a rhythm going.”
Ann got advice from a doctor that helped her through the process of caregiving her loved one: “Kathy knows where she’s going. Just follow her. Don’t have any thoughts about it. Her whole life she’s known where she’s going, and she knows now. So just follow her.”
Ann felt most guilty over the times when she got so tired that she became irritated and short with Kathy. “And the more I was irritated, the more she demanded … I was guilty because I didn’t behave well.”
She credits a long-time meditation practice with coming through Kathy’s illness and death as well as she did.
“It was a beautiful passing and it was time. I woudln’t want her to have more dementia than she had,” Ann said. “We’d had 47 years together. so what more can you ask for from this world?”
I want to admit something to you, dear reader.
It’s something that we caregivers are not supposed to say out loud. It’s not polite or socially acceptable.
It’s quite possible that you’ll judge me harshly and think I’m a terrible person when you finish reading this. That’s okay because I think it’s vitally important for someone to say this out loud. Nobody said it to me, and I carried a huge burden of guilt during my time as a caregiver.
There were moments during my mother’s illness when I wished that I was the one who was sick. There were even moments when I imagined how free I would feel once she was gone.
There are tears threatening to spill over as I sit here typing this, because I know that this wasn’t the real, deep truth. The real truth was that I wanted my mom to live for as long as possible. I wanted every day with her that I could have. Now that she’s gone, I ache for her every single day.
But in the midst of the most sustained period of stress and trauma I’ve ever experienced, there were moments when I just wanted a break.
I was envious of my mother for lying in bed and being “waited on.”
I was envious of the attention and care that cancer afforded her.
I didn’t want to have cancer myself, I just wanted some time where I wasn’t in constant crisis mode.
I wanted some time where I wasn’t on-call 24 hours a day.
I wanted some time where my needs were the ones being taken care of.
Instead, I was working a full-time job while also trying to be present for my mom 24/7. Let me be clear: my mother didn’t put this pressure on me. I put it on myself.
I remember one day my mom asked me to get something for her but I arrived at her house empty-handed. I had forgotten the request mere moments after she made it. That’s when my mom said to me, “I know how stressed you are. You used to remember everything, and now you don’t remember anything!”
Thankfully, rather than turning it into a problem, Mom and I were able to laugh together about my inability to juggle all the balls. That was the grace that my mother gave me.
But I cannot deny that even in what some might think of as the best possible caregiving situation (Mom was alert, communicative, and often in good spirits), my exhaustion and stress built up to untenable levels. There was no way off the hamster wheel until Mom was either miraculously cured or took her leave of this earth.
I’ve heard overwhelmed parents guiltily admit to similar feelings in whispers: “My life would be easier if I’d never had this baby!” They don’t actually mean they don’t want their child, but their current situation feels like it will never end and they don’t know how to make it better.
Exhaustion and stress can do terrible things to our brains and our ability to cope.
That’s why I think these stories of caregiver exhaustion are so vitally important to tell: so that if and when you find yourself in this place, you will know that you are not alone. You are not crazy. You are not a terrible person. There is no need to feel guilty.
This is NORMAL.
Truthfully, knowing that wouldn’t have removed my guilt entirely.
But perhaps if I’d admitted those feelings out loud to someone at the time, I could have vented the feelings instead of spending so much energy trying to push them away. That was energy I could have spent being a more effective caregiver and advocate for my mom.