A Caregiver's Guilt


A couple of years after Mum moved to the rest home, she and I were heading slowly through the gate and along the footpath to my car. It was a beautiful spring day.

A pleasant-looking man was walking his little girl up the street. The child would have been five, maybe six. My mother smiled at her, as she does these days to all small children.

“What’s that?” the little girl asked, pointing to the rest home.

Her father replied so promptly and so deliberately, it was like he’d been waiting for that very moment.

“It’s the place where they put their old people. When they don't want them anymore.” Then he caught my eye and held it, just to make sure.

What could I say?

That I can’t provide the 24/7 supervision required by someone whose short term memory is pretty well shot? Not without giving up work.

That neither Mum nor I have the temperament to last more than a couple of weeks living on top of each other with my partner and two kids?

That my mother has always said that she never wants to live with her children? Her own childhood experience in a three-generation household convinced her of that.

So why has this come back to me, three years on?

Maybe it’s the season.

Maybe it’s the fact that this week I’m moving Mum again. Back to the rest home we took her to when she first lost her independence.

This latest move is the result of a failed experiment. Six months ago I moved Mum to a beautiful, spacious, purpose-built home on the other side of town. It has its own immaculate ensuite (private bathroom), a luxurious adjustable bed and a room that is more than a tiny box.

But it didn't work.

Mum missed her friend Clarice and the small group of staff at the old place.

She missed walking ‘round the suburb she had known since before she lost her memory.

Most of all, she missed being close to family.

She felt like she’d been sent away; Banished to another city, even though it was just the other side of town.

So I’m moving her back. I’ve talked it through with her and I’ve written it down. I’ve spent the last three weeks explaining what’s going to happen.

Mum’s taken down her pictures and she’s got her suitcase out. She has no idea where she’s going.

It’s like playing God.

Sarah Jane is a freelance writer/researcher and part-time caregiver for her mother Eleanor* who has dementia and lives at a rest home nearby. Sarah and her mother spend Saturdays enjoying each other’s company, pottering about and having the occasional adventure. Sarah lives in New Zealand where she writes and speaks about dementia-related issues.

Visit Saturdays with Mum

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Divide people into those who know about caregiving and those who don't and assess their comments accordingly. I have taken care of my mother since my father died over nine years ago. I kept my job on which supported me and my daughter for a little over three years and left work to take over the full-time care of my mother. This lasted for three years, starting at difficult, and ending at impossible. I never got more than four hours sleep a night, was constantly in motion, and constantly denigrated by Mom because she was unhappy with her age and limitations and needed somebody to take it out on. Like you, I could not provide the 24 hour a day care and supervision that Mom required. I couldn't go to the bathroom for five minutes without risk that she would leave the house or do something that would result in an injury. The three times that she did escape the house, and that I called for police assistance to help me get her back into the house, the police questioned and observed me and inspected my home to see if I was abusing her. At times Mom acted as if she hated me, bit me, grabbed my hand and tried to dislocate my thumbs, and was hourly scathing in what she said to me. I have been paying for Mom's very excellent care in a high-level dementia care facility that looks like a palace for the last three and a half years, and had to sell my house to do it. What do people say to me when I explain to them why I cannot leave the area and retire to a less expensive place to live? "Well, your Mom took care of you when you were a baby." I'm not asking for sympathy, it is just a statement. People are stupid, and they do not know anything until they experience the 24/7/ten years of caregiving. It took me over a year to mentally emerge from the damage of extreme caregiving, and I haven't recoverd physically, and at 65, don't know if I ever will. I did too much. I must be the high-priestess of caregiving by now; call me St. Susan, and St. Susan hereby informs you that you have a place in heaven and in the estimation of the loyal order of caregivers right now. Go forth and enjoy your life.
SusanJMT I understand exactly what you are sharing with us. I have been caring for my grandfather for 8 years while working full time. My grandparents only had one child "my dad" and he passed away in 2005. My grandmother then past away in 2008. Grandpa never handled any financial matter so I picked up that full time when grandma past. Grandpa has moderate dementia and became worse over the past year. He needed 24 hour care at home. My sister and I have struggled to take care of him while missing work and friction in our own homes. We moved him to the nursing home last week. I have so much guilt but also have a peace in my soul to be home with my husband. I know if grandpa was in his right mind he would understand.
After reading this article and comments and thinking about my Caregiving journey with my Mom for several yrs with Alz Disease.... so many emotions run through me. The slippery slope of all the ups and downs, daily, coping with SO much change and bearly recognizing my Mom, it's so hard still wrap my head around what happened. There is a surreal quality to how she morphed and ultimately died a very cruel death. Nobody knows our individual experience and now it impacted us. It was a year in Nov '15 and it's very recent, still. Learning to live with "what happened" is ongoing. My friends couldn't really comfort me. It was a very lonely experience. I'd like to see a social network or professionals who "debrief" you after Caregiving. No matter the illness or state of the person you're caring for, it's a monumental experience for so many reasons. I'm writing a book about my experience that will include my artwork in hopes to comfort, connect, inspire and bring peace to those that are in the Caregiving role. I hope it helps a lot of people. In my darkest days all I could think about was helping others who were walking this walk to feel understood. God bless all the Caregivers of the world. This is a global crisis we're in and we need the resources to help us along the way as well as after the fact.