Violet Guide Maree says caregiving felt less like a journey and more like a trek through difficult terrain with no end in sight.
“It was a hard slog. At times I felt like I was carrying a heavy backpack up a steep hill. I’ve heard a few carers reflect on their journey as the most worthwhile thing they’ve done in their life. But when you’re in the thick of it, on a really hard day, there’s not much comfort in those words”.
For Maree, the hardest days of caring for her partner’s father, Harold, came in the last four weeks of his life. Harold had been diagnosed with Lewy Body Dementia (LBD) and had recently moved into an aged care facility after becoming increasingly confused and frail. When the doctors advised he wasn’t going to get better, the decision was made to cease the antibiotic treatment that was prolonging his life but not addressing the infection.
“As the days went past, we thought every day would be his last. Harold was in pain and distress. Sometimes my partner had to fight for pain relief to be administered. We were sad and grieving and extremely tired from spending the days and nights by his bedside.”
In those 21 days, as they sat vigil by his bedside, Maree and Harold’s family wondered if they’d made the wrong decision.
For Karen, the tough days were the significant milestones and special events.
Karen cared for a very close friend after he was diagnosed with terminal Multiple Myeloma.
My friend was only 34 when he received a terminal diagnosis. It was hard to come to terms with, particularly as his wife was 16 weeks pregnant. Within weeks he commenced dialysis and chemotherapy, so I moved in with them to care for him and support his wife during her pregnancy and at the birth.”
Taking on the support person role at prenatal scans, coordinating her friends’ medical needs to ensure he could be at the birth, and making sure people were around so he could hold the baby once she was born were all trying parts of the journey in their own way. But Karen found Christmas Day the most challenging.
“His last Christmas was also the only Christmas he would share with his daughter. He died four weeks later on her first birthday. We tried hard to make it a positive event, but it was definitely the hardest day of my caring journey.”
Caring for someone you love in the last stage of life can be physically, emotionally and financially challenging. So it’s natural to have days where you feel angry, frustrated, confused, sad and alone. But even on your toughest days, these simple things can make it easier to cope.
As a caregiver, you’ll prove over and over again that you can do hard things. But you don’t have to do them alone. When you’re feeling spent, your family, friends and even medical staff can give you hope and relief. So share the load with them. After all, it takes a village in the last stage of life.
Having other friends to talk to and bring meals helped Karen feel she wasn’t carrying the burden alone.
“It helped to shift things when friends would drop in to take his wife or me out for a 15 min walk or even a quick coffee.”
For Maree, it was the gentle and caring way a new nurse spoke about death and what to expect.
“For the first time, someone spoke to us directly about what was happening. She told us that Harold was actively dying and let us know what to expect. She told us that hearing was the last sense to go and brought us calming, soothing music to play at night. She empowered us with her knowledge and expertise and gently held space for our sadness and fears. We felt so grateful to have her guidance on our hardest days. It made such a difference.”
When caregiving feels overwhelming, it’s a good cue to slow down and exchange your caring duties for moments of connection and intimacy with your loved one.
Simply taking time to be present in each other’s company can open the door to a deeper shared experience. For example, you might listen to music together, hold hands, or re-tell some of your favourite memories.
Maree found storytelling and photographs helpful during the last weeks of Harold’s life.
“We knew he was going to die, so we gathered the family around him and brought his favourite photos and special items to his bedside.”
Karen made an effort to focus on the special times as she cared for her friend in the last stage of life. She took videos of prenatal appointments so he could still share those moments with his wife. And they’d joke about who the baby would take after to lighten the mood.
“On the challenging days, I always tried to reflect on his many accomplishments as a husband, great friend, and his potential as a father.”
You can’t pour from an empty cup, particularly on the hardest days. When you’re feeling overwhelmed or burnt out, a small act of self-care can help you feel better and more able to cope.
Be kind to yourself. Your role as a caregiver is important, and so are you.
Show yourself the same care and empathy you give to your loved one.
Violet Guide Rose Dillion says, “Even a short respite away from the caring role can be beneficial - coffee with a friend, a walk around the park, a movie (my fave as it forces you into another world for a short while!).”