Saturday, January 9, 2010

When no-one believes you

I feel so sad and alone tonight. I have tried to tell my brother and his 19 year old daughter for some time that something is wrong with my mother.

When I sent him an email asking him to help me with a problem, he rang her and read it out to her, telling her I was telling lies about her. It took three weeks to calm her down.

He never believed me when I told him that Mum has chronic kidney disease, or a serious blood condition (which has cleared up) or blindness caused by macular degeneration. I should have just stopped telling him things.

Anything I told him, he'd ring Mum and ask if it was true. She'd always say "No, I am fine, I've never felt better." Either she didn't recall the doctor's words or she didn't want to worry him. So this was more 'evidence' that I was a liar.

Recently Mum had a type of fit on a plane. She just fell unconscious in her seat with her eyes wide open. I thought she was dead. On landing, she was rushed to hospital. I thought: this is it. She's going to die. I really have to ring my brother (even though I'd promised myself I never would again).

So I rang him and he said "Is this another one of your lies?" I told him the name of the hospital. I was there, later, when he was speaking to the doctor and I could hear what he was saying. Was she really taken by ambulance from the plane? Did she really collapse? I heard the doctor say "She says she has a brother living nearby and he will come and get her tomorrow." I don't know what my brother made of that. She has no brother; he died three years ago.

I took her home the next day and my brother sent his 19 year old daughter down to see her. I don't know why he didn't come himself. But then he's only ever seen his mother a few times a year and he never bothers to ring her. He's never shown any interest in her welfare whatsoever.

I made an appointment for her with her own doctor, who has seen evidence of the dementia when she didn't recognize him or recall that he'd given her antibiotics three days before. In fact, he was the first and only health care worker to say to me, "Did you know your mother has dementia?"

My niece took Mum to the doctor. I just let her go, I was so exhausted. It turned out later, that she'd said I didn't want anything more to do with my mother and she was going to live in another city 300 kms away.

My niece took my mother away to my brother's house. I rang her on her mobile phone, which she can still use, and she told me she was having a brain scan. I rang my brother to enquire about this and he slammed down the phone. He did this a few times, on one occasion saying "I don't talk to liars."

I rang Mum a few more times. I asked her to call out to my brother and ask when she was coming home. The answer was always some excuse about appointments coming up. He refused to give a date. I sent him a message asking when she was coming home. No answer.

I got really worried. Mum was saying "I just want to go home to my house and my cat." My brother and his de facto weren't letting her go. I found out they'd booked her for an ACAT assessment. They don't do those assessments in someone else's home so I rang and cancelled it. This must have made him very angry.

But the final straw was when I got a fake email which appeared to come from Mum. She doesn't use the computer any more - she can't see well enough - and she doesn't have an email address.

The email said "Don't ring me any more. You are only upsetting me. I don't want to go home. I am staying here."

I got recordings of Mum saying "I want to go home" and my brother in the background shouting "You're not going anywhere". Then I drove 300kms and went to the local police station.

They came with me to rescue Mum.

She was very glad to get home. I'm sure the police coming and Mum going home intensified my brother's hate for me. It also made my niece hate me as well.

I had some very nasty emails about the 'fact' that Mum showed no signs of dementia and that my brother would be getting legal advice about getting Power of Attorney. If she's OK, how was he planning to do this?

It's amazing how someone with dementia can hold themselves together for a whole week. Maybe it was because they did everything for her so she didn't have to think. She couldn't lose things, because they were there to look after everything.

So here I am, all on my own. But I do have my kids. They have seen the signs. They are 22 and 23 years old. My daughter saw the catastrophic reaction. My son has seen a few things happen. I can't expect them to look after Mum, though.

The loneliness of the dementia carer.


  1. We have a lot in common. My brother could not care less about our mother an is very upset that I will be her POA, trustee and finally executor.

  2. My mom has four children; we've all rallied around her - or have tried to anyway. She favors my youngest brother. FAVORS HIM - and her whole world seems to turn upside down when he goes home to his partner (his house is in Las Vegas - hers is in Utah. My brother spends more time in Utah than Vegas, I think. But it's bound to change)

    My family has often accused me of jumping the gun as I would often have lunch with one personality while my sister-in-law had lunch with quite another. Mom has deteriated a lot. Never has had a great sense of direction - even without the dementia.

    I suppose I could go on and on - but this is your blog, not mine, and I don't wish to take away (though it's been over two years since you posted)
    Just wanted to express my understanding - though I don't fully relate - it's an odd situation. Wish there was another way. I admire you for hanging in with her.


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