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Caregiver's Story:
In Her Own Words

by Suzanne Berton

"In a heartbeat," said Lise with certainty when asked if she had to do it all over again would she stop everything and put her life on hold to care for her terminally ill Father. "I owe them who I am, what I have become because of loving them," she said concerning her parents who are now deceased. "I could never ever consider throwing them in a nursing home and letting strangers, even kind ones, take care of them. I have learned so much about this experience that I think I would be less of a person if I hadn't done this."

Lise, a 46 old woman from Sudbury, Ontario, took eight months off from her job to provide care for her Father who was dying from cancer. "It's not something I was ever prepared to do nor did I know anything about what I was in store for - I felt really inadequate." Feeling powerless at times since she had never done this before in her life, she said she was "ill-prepared to what was going to happen. I felt like I was not all powerful to control what was to happen, especially myself." She hoped and prayed continuously that she would be "strong enough, courageous enough" to go through "this journey."

At first, she felt as though she were "rebelling inside. I didn't want to be the one doing this and yet, after a while, I couldn't see anyone else really doing it. I know now that this is one of the things I was meant to do in life." For her, acceptance was a turning point. "I accepted that no one else could do this at this particular time except me." Other family members lived in other cities afar, some were raising small children, and others were financially unable to step out of their lives to go to another city. "I was basically alone with myself most of the time. I had truly analyzed this because at the beginning I didn't want to be the 'one.' " Even though she was scared of what was going to happen - the unknown - she finally accepted that it had to be her; she felt almost as though it were her "calling."

At the onset, she had tried to get help through the Community Care Access Centre, but her Father refused outside help. "He refused to answer questions. He was too weak and very impatient." He only allowed a nurse to come in to his home. She couldn't force him to get help.

In the beginning, Lise thought the biggest sacrifice was giving up her job. "That wasn't really it in the end." She came to a place where she realized it wasn't a big sacrifice after all. "God looked after me during this time. I've tried so hard to learn things about myself and Mom and Dad that it can't really be called a sacrifice anymore. I grew up in ways that I didn't expect. Character wise."

This "journey" as she called it, turned out to be more than she anticipated. "You just don't realize the gift it turned out to be. It was truly a gift. I hope it was for him (her Father), too." It cost her more than a job, she said. "It cost me emotionally, of course. There is no denying that at all. But the growth was tremendous."

Her family suffered through this experience, too. "I didn't even allow them to share in what I was going through. It was way too personal of a journey."

" I didn't learn everything at once. Things would just make sense to me. They became clearer as time passed and they still do." Lise said she had these "light bulb" moments that helped her to deal with things as they happened. "About choices. I could have shipped Dad off or left him to his own devices. That is not what I'm about…that is not what our Mom and Dad were about. The easy road is not one I'm ever going to be on." For Lise, "things happen for a reason" and she felt that sometimes people don't always get the answers immediately. Taking care of her Father, also helped her comes to terms with her own Mother's death of cancer years before.

The biggest challenge she faced was having "the tables turned, me in charge with him - especially with his forceful personality, which was still there at many times." It wasn't always easy to take care of him particularly his rude comments. "How could he say these things to me when I'm taking care of him?" she'd cry out at times. Her Father, she said, was not one to "mince words."

Other challenges presented themselves to her. "At the beginning, he was very weak from the treatments he had previously taken…this is how it actually started." Her Father would go from weak to strong to weak again. It was a roller-coaster ride for her and her Father. "When he got stronger, he still wanted to do his normal routine as best he could. He insisted on washing in the morning and shaving."

She discovered through this that her Father functioned within a schedule. "He would set out his meds that he had been taking for years. He'd nap. I did the wash, went for the mail, ran to get some food, etc…When he was stronger he insisted on driving to the coffee shop." Though she felt nervous at his driving, Lise permitted his need to keep some independence because she "refused to make him feel like less of a man." She talked to him about possibly hurting someone driving. "He stopped driving." This was a difficult moment for them both.

One of the things Lise felt she could have used was respite. "Someone who could have come instead of me once or twice a week." Eventually, Lise felt she had to accept that she "was in this alone. By then Dad had grown accustomed to our routine." Her Father "never complained of pain. He felt like we were a small little family, he'd say." This gave her a good feeling knowing that she had made him comfortable. The hard part wasn't giving up her time or the physical works she had to do to help him. "It was the emotional side of things. It was the trauma it caused me inside. It wasn't hard work. It was the thing you pushed out of your mind that ate away at you that was hard."

There were rewards to taking care of her Father. "The biggest reward was coming to terms with him as a man and not just my Father. Seeing a whole other side that I didn't see growing up."

Lise really believed that she would not have developed this relationship with her Father in any other way. She had to let go of a lot of anger that she felt for him. "One thing that surprised me about him was how much he cared for his family. He'd speak of each one in his own time and his own way." A tall order in a way since Lise grew up in a family of nine children and with numerous grandchildren.

"We didn't have discussions or arguments. He'd just speak out of the blue. We didn't have any big revelations." She let things happen as they happened. "What I learned about him was through these little moments together." She appreciated that he was "a good man. He wanted things good for us." Her Father still showed concern for his family to the end of his life, she found. Lise loved his sense of humour, and she realized "he loved attention." Yet, through the whole experience, she decided, "it is the hardest thing I ever did or might do again. I would do it all over again. It made me sad, too, not being there for Mom in the same way. I guess I wasn't ready for that one. It brought me closer to them in ways I can't ever explain."



Suzanne Berton, who was born in Sudbury and now resides in Kingston, has enjoyed her journey of developing her writing style since the early years when her own children were toddling along; she wanted to write Children’s stories. From there her journey began. She took courses in creative writing, acquired a diploma in journalism and non-fiction writing, and spent years writing in one form or another. Her greatest pleasure is knowing that her work is being read. Suzanne is a member of < a href="http://www.Cangrands.com">www.Cangrands.com, a site for grandparents who are raising grandchildren and who are denied access to them. She also writes free verse poetry.

Have a look at Sue Berton's web site at www.artabus.com/berton.

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