Caregiver needs a break
Q. My husband of 25 years has brain cancer. He’s a wonderful man and an amazing father.
He has a positive attitude and outlook. He experiences daily seizures and can become easily agitated, but as a couple we’ve developed coping skills to avoid any real escalations.
However, he’s dying, and I can’t imagine a life without him in it. Our two children, aged 12 and 14, know how ill he is and our family bond is strong. We spend hours playing board games, cards, working on homework and just being a family.
I’m the sole and primary caregiver plus the mom. My husband finds it difficult if I’m not close by. But I’m tired, physically and emotionally.
My in-laws can’t acknowledge how sick their son is and only pop by for brief visits. My husband’s been clear with me and our doctor that he isn’t interested in a personal support worker (PSW). He’s a proud man but needs help with basic hygiene, etc.
I need a break but haven’t a clue how to get one. I want what’s best for my family. Seeking Ideas
A. It’s understandable that you’re the most trusted person and source of comfort in your husband’s life at this difficult time.
It’s equally understandable that the current responsibili- ties and emotions are exhausting for you.
You absolutely need a periodic break!
It’s not just to refresh your energies, but for his sake, too, so you can keep up the demanding tasks and reinforce his positive outlook with your own healthy one.
A quick online search will introduce you to how to get respite care in your area.
Having a trained PSW in your home for, say, four hours a couple of days a week is not the intrusive presence your husband may be fearing.
You could be there the first couple of times, making everyone comfortable with the person as well as the concept.
Then you could use that time to go for a walk, get out with a friend or just rest “off duty,” knowing he’s safe.
That’s when you could urge his parents to drop in so you can assure him he’s got close people on watch during the time you’re not by his side.
I’m certain that some readers will also send in their ideas and encouragement from their own experiences. Reader’s commentary: regarding the young woman who feels “Unloved” by her mother (Aug. 30)
“My mother died many years ago, when I was 24, had a baby and lived in a foreign country with no long-standing friends around.
“Local social services had nothing to offer for my very contorted grief over many of the issues that this writer described so clearly.
“Recently, I learned that Childhood Emotional Neglect (CEN) can be a profound and far-reaching stain on one’s developing sense of self.
“It’s an only partially healing wound that lies beneath all future relationships and anticipations regarding these relationships.
“Perhaps this writer could be directed to some of the more recent supports out there for this fairly recently and specifically described psychological issue of CEN.
“There are various supportive blogs on this topic and a couple of reasonably good books by Dr. Jonice Webb to support those living with this longstanding wound.”
Ellie: Dr. Webb is a Massachusetts-based psychologist/ therapist, author of Running on Empty: Overcome Your Childhood Emotional Neglect and the Invisible Scar, which provides resources and information about emotional child abuse. Ellie’s tip of the day Getting part-time caregiving help for a dying loved one is crucial for maintaining your own energy and health necessary for supporting everyone involved.