The Hardest Thing I’ve Done


I have been a caregiver off and on for the past thirty plus years, first for my mother, and lately, for my husband Charlie.

I think the joke is on me.

I left nursing school after completing my "probie" year because it really was not what I wanted to do with my life.

My mother prodded me towards a nursing career. She had always wanted to be a nurse; her father was (as were many parents in the 1930's) of the opinion that it was a waste of time to educate a female. After all, they'd just get married and raise a family.

So here I am; a caregiver for the fifth time in my life. You tell me; Is God punishing me for quitting my training, or has He chosen me because I have a little bit of knowledge in the medical field?

Or, perhaps it's just fate.

My mother developed nephritis in the late 70's, following a bout with a strep infection. It wasn't long before her condition deteriorated to the point where dialysis was necessary to keep her alive. It wasn't until the mid-1980s that dialysis centers opened up in small cities. In Mom's case, it meant a 75 mile drive to Buffalo, NY three times weekly for dialysis. You've all heard about Buffalo weather! The trip was often a nightmare, a terrible stress and financial ordeal for family members that had to drive her for treatment.

After about one year of this, the hospital offered to train family members to do the complicated procedure in Mom's home. Medicare provided the dialysis machine, a special reclining chair, and the filtration supplies.

The equipment was set up in Mom's converted sewing room and my sister and I began the training in Buffalo. We both took time off from our jobs three days a week; she from teaching art, I from my job at a University, to learn the procedure that normally requires a nursing degree.

The first time the art teacher with no health care experience, had to tap the fistula, she fainted dead away. The training nurses had to rush to revive her, and rescue my mother from a bleeding tap site.

After several weeks training we were on our own at home, scared to death. Our mother's life was in our hands every time we tapped her fistula and started the four-hour procedure.

The only safety net we had was a telephone that had been installed that connected us directly to a hotline at Buffalo General. Thankfully, the only time we had to use it was one time when the machine malfunctioned in the middle of the procedure. A technician was able to walk us through the problem and we proceeded without consequence.

For over a year my sister and I went to Mom's home after work three days a week and spent most of the evening, operating the machine that was keeping her alive.

Finally a dialysis center opened up in a city about 30 miles from home, a much easier trip, and she was put back in the hands of professionals.

You never know where your caregiving path may lead you.

I could never have foreseen the direction my life would take when I left nursing school. In retrospect, I thank God that I had some training to fall back on.

Most caregivers are handed that responsibility out of the blue. Here's life – deal with it!

Compared to dialysis, caring for Charlie and his dementia is a piece of cake. We all do what we have to do. It isn't easy; sometimes it‘s darn near impossible. But we do it.

Marlis describes herself as a “Gramma who loves technology and has a lot to say.” She blogs about whatever catches her interest: food, books, family and more. For, she writes about the issues facing the elderly and her experiences caring for her husband, Charlie, who suffers from dementia.

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Not that I ever had any nursing training, but I too have been a caregiver (and still am) throughout my life thus far. To start with, our son was born with a disability when I was twenty-eight. It was a hard go in the beginning, but all the hard work has paid off with him. I am so very proud of all he has and still does accomplish
Then at the age of forty (while dealing with our son and his programs) I took on the role of main caregiver to my mother-in-law, who had dementia. I cared for her until she needed to be placed in a nursing facility. Then at 57, I became a caregiver for the third time, when my husband was diagnosised with early onset dementia at age 58. This is the last one is the hardest of all, for I am losing my partner in life.
With our son, my husband was there to carry part of the load, as with his mother, but not this time.
He has recently been placed in a facility, which was the hardest and saddest thing I've ever had to do.
So, you are right, one never knows what life has in store for you, but when it's people you love, it isn't a matter of do I want to take this on, it's a matter of what can I do to help.
This is why many caregivers die before the ones being cared for - because they want to just to escape the misery and drudgery. And they do not get enough recognition but are called whiners when they get overwhelmed, which is so wrong.