Edna's story: 'No one really knows how demanding it is to be a carer except those who deal with it'

Caring for someone with dementia is difficult, especially if your relationship with the person is complicated. Here, Edna shares her own personal feelings about what it's like to be a caregiver for her children's father, who has dementia.

A matter of principle

I convinced myself at the time that it was all a matter of principle.

Returning to my children’s father now at his time of need. I could help, I told myself. I could somehow provide a magical resolution to his situation. His sad situation. 

He had once been the king of his domain. This came to an end when he had his last stroke. A devastating stroke. One that took from him the most important possession anyone could own. His mind.

His stroke resulted in dementia. And with his dementia came the total dependency on people around him.

My oldest daughter cared for her father for two years. She brought in caregivers to her home to help assist him in his daily needs.

He was irritable, still mean at times, often rude. A lot of his old traits still clung on. His dementia didn’t seem to lessen these traits but at times, aggravated them.

Our relationship

I had left him long ago. Before, I felt like a bird in a gilded cage. We had been married for about 39 years, and had eight children together. They were all grown at the time.

When I finally left, I felt free. The price of freedom was great but at least I felt I had my own life and could pursue some of the dreams I was not able to earlier.

I knew he always loved me. Yes, his love was not reasonable, not as one might love a partner in life, a soulmate, but more as one would love a material object.

I'd had the chance to visit him on a few occasions before deciding to become his carer. It was such a devastating situation to see him in the state he was in.

But I could help. I had to help. It was a matter of principle.

So, after two years into his dementia, I came to care for him. One of my sons and I live with him in a small house in a quaint suburb.

I discovered that caring for a person with dementia is not at all easy. It is very demanding. It’s stressful.

Of course, the main issue is those who live with dementia. Their world is not one of reality as we know reality to be. It is a world of their own reality.

Time disappears. Nights are turned into days. They are confused and their world is one of confusion. They don’t recognize people around them. They live in the past. They can’t control their urges. They don’t have inhibitions as they once did. Sometimes they think they are children or someone of a much younger age.

Those people related to them who have long passed away, still live in their imaginations. They call out to them, they ask about them as if they are just in another room. 

How to explain to him that his mother, father, and some siblings are now dead?

I discovered that Death is not a pleasant word for him. I say instead, “Oh, your mother is coming back soon.” I know he would forget what I said in a minute or two. Replacing the bleak situation of death to a momentary absence is much more pleasant.

Being a caregiver

And I am now here, living with a person with dementia.

Yes, sometimes he is still rude. Sometimes he is still angry. Sometimes he still hates people. But sometimes he can be a little compassionate.

He is blind in one eye and can barely see in the other. This is a result of glaucoma. He is not bedridden but does not move a lot now. He cannot get up on his own. He also needs someone to bathe him, take him to the bathroom, change him, and groom him. When a carer other than my son and I are present, that carer does most of this grooming.

He doesn’t understand the world he now dwells in. He can’t comprehend situations. He is very sensitive to heat and cold. He cries easily. Most of the time he doesn’t know who I am.

It is often very frustrating to care for him; it is sometimes rewarding. It is always challenging. But no one really knows how demanding it is to care for people with dementia except those who deal with it.

Yes, I felt it a matter of principle that I return to him and help care for him. My new norm is partial caregiver to a once upon tyrant turned helpless.

Rude awakening: I have no magical resolutions to his dementia. I am not a key to anything. But I do care about his welfare.

I do want to help him even in the small ways I manage. It is not just a matter of principle, but a matter of total commitment.

If you have a question about dementia or need some support, call our helpline to speak with our expert advisers, or join Dementia Talking Point to chat with other people in your situation. 

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I read this story and it was like reading a chapter from my life. It was harrowing but beautiful at the same time. Thanks for putting into words your experience.

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