Sunday, 26 January 2014

A parent with Dementia

I live 18,000 kms away from my mother who spends her days in a bedroom in a rest home in Christchurch, New Zealand. Every few weeks I make an international call to see how she is, knowing I'm going to have to deal with someone who is no longer capable of functioning independently and with whom  I cannot discuss anything important.

We've never been close. I have no recollection of ever receiving a kiss or a cuddle or a pat on the back as a child or young adult. She never had any maternal instincts towards me though that was probably not the case towards my younger brother. Some of her treatment of me in the past has been downright inexcusable but I wouldn't want to be in her shoes these days. Her brain and personality and even her identity are rotting away from some form of dementia.

When the second and more devasting earthquake hit Christchurch in February 2011 Mum's house was damaged to the point where it wasn't liveable and there was nowhere safe for her so after a few weeks at my brother's place he put her in a retirement home which handles people like Mum. She needs nursing care. Last week I managed to glean a tiny bit of information from temporary staff at the home. It seems Mum has frequent urinary tract infections, is incontinent, and hardly leaves her room. But she still remembers me as her daughter who lives near Paris.

Each time I speak to her it starts the same, she's close to tears and very distraught by the earthquake because she has lost everything. It's as if it happened yesterday for her but it was, in fact, three years ago. She's angry because she was put in a home with nothing to do, surrounded by old people with no interest in life.

As we chat, me making encouraging noises and trying not to argue with her view of the facts, and her repeating the same sentences she says every phone call and often repeated during each call, she seems to develop some lucidity and the intelligence she once had makes a phantom appearance. We discuss the corrupt state of politics, my employment difficulties, but it's always dangerous to ask her a question.

 I made the mistake of asking her if she had received her Christmas and birthday presents. I'd made an effort to buy and make things that might be comforting and interesting for her and help her remember things she enjoys for a little bit longer. It cost a lot for me and I needed to know it there had been any point to my efforts to help. I received a listless reply saying she didn't know, she couldn't remember. Her room is not large so I asked her if she could see them anywhere. No she couldn't and wouldn't know where to look so they are probably not there.

"Well, I can ask the staff if they've seen your parcel arrive. It's from France so that should stick in their mind,' I said.
She became very afraid and agitated at this suggestion.
"I don't think that's a good idea. It'll just make things worse. They'll get angry and it'll be worse for me then. Best to forget about it."
"But Mum, what's the point in me sending you things from France if you never know if you have them. It costs a lot of money and if you get no benefit, well..."
"You're very rude, that's not very nice," she said.
"OK, but what do you suggest I do? Is it reasonable to keep sending you stuff you don't remember receiving?"
"Oh, I see what you mean," she replied.
I needed to settle her distress so I said not to worry. I'd keep things cool.
"Is there a TV room at the home?"
"Oh... I think there is one somewhere . No one ever visits me, there's nothing to do. I buy the paper and read that, that's all. Someone gave me a thing to watch photos. I'm doing that, it's about my trip to France."
"That's great."

She rarely asks me questions but she asked about my health. I explained about the arthritis and I could almost hear her nodding. This sort of 'normal' but superficial conversation can lull you into thinking your parent is almost normal but then she'll say something paranoid or start repeating her sentences and I come down to earth with a thud, knowing the next time we speak she'll be worse. I tell her to look after herself and keep helathy and that probably her house will be repaired this year.

"I don't know anything about it. Nobody tells me anything."
"As far as I know it's repairable, just a matter of waiting your turn after the more urgent cases, Mum."
"Well, you seem to know a lot more than I do," she says, sounding somewhat reassured. "It's all terrible, this earthquake. I've lost everything and I'm all alone."
"You never know Mum, keep up your spirits and look after your health and just maybe you might see your home again. You're in a good place for health treatment."
She perks up at that but immediately slides back into listlessness and as with every phone call I make to her, she gives up on the conversation after only a few minutes using the excuse of it costing me an arm and a leg.
"Actually Mum, it's free, doesn't cost anything."
"Humph, don't see how they can do that."
"It's part of the internet and TV package I pay for here, all down to competition for customers."
"Oh, well, I don't understand all those things these days. I spend all my days in this room. It's not much to have in life at my age. Must be costing you and arm and a leg so I'm going to hang up."

It's tiring for her to make an effort, to try to remember. She doesn't talk about her distant past and she rarely takes an interest in what I'm doing. She never asks about my daughter, her grand daughter anymore. I know one day she'll forget who I am and who she was. Each time to try to talk to her and lift her spirits I'm left tired myself. I know it's useless to send her things now.

I put the phone down and rang the rest home back. It's usually someone new that answers each time, they always seem to be on temporary assignments, no continuity. The lady couldn't be sure the package had arrived but she seemed to think something had arrived from France. My mother would speak about a daughter in France. Mum had a lot of falls, constant infections which made her condition worse but she was on antibiotics at present. That's all I could find out but I reminded them to contact me if the situation got bad.

Feeling helpless and mal-informed because of distance I sent an email to my brother. After a couple of weeks he replied to my questions saying Mum couldn't cope with being away from the home for more than an hour, she always wanted to get back. She never did anything but lie on her bed. She never took part in any of the activities organised for residents. He said several people had sent her presents for Christmas but when he turned up to check on her two days later they were still sitting, wrapped up on her bed, unopened.

Typically she has lost interest in a life she can't cope with, where paranoia can make her fearful. I thought back to some upsetting phone conversations I had with her when I was still living in Auckland, trying to make contact with her, trying always to connect and now I can see that more than 10 years ago dementia was already present. She's only 84, it's not that old but it's now common to have dementia at her age and younger. My father was determined never to die slowly like that. He said he'd put a pistol to his head before he'd go into a home. He got his wish, he died in 2000 of a massive heart attack while working in his workshop doing what he liked best, at the age of 70.

I don't know if I'll see her again or, if I do, if she'll even remember me. It's a dreadful disease and I'm trying to understand it. Its not hereditary. Her parents didn't seem to have it. Today I finished reading a delightful and sad book called The Little Girl in the Radiator: Mum, Alzheimers and Me, by Martin Slevin. It's sensitively and honestly written and sends out a plea for more money and research to be devoted to what will destroy more people than cancer will. It's an illness that poisons life for patients and their families and friends and I hope it never happens to me. In the meantime, I'll continue to ring Mum when I can so that for a few moments she doesn't feel so alone.
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Anonymous said...

I've never commented on your blog before but this post touches on something very close to home for me and my family. Not a great deal I can say to help, except try and stay strong for the ones that need you and don't be afraid to reach out to those close to you for support. Mon dieu you're due some better times ahead, you truly deserve some...

David Tal said...

Thanks you so much for sharing this. My grandmother has been forgetting so easily lately, I thought there was no way it couldn’t be Alzheimer’s. From your signs, I think it is. I hope we can get her some help soon.

Dementia specialist

Michelle Simmons said...

I'm sorry to hear about how your mother dealt with having dementia. I hope you're aware that her dreadful state of mind doesn't mean she no longer cares for you as her daughter, but it's her disease that is gradually making her fondest memories of you and your daughter fade away. In any way, I hope that you are all faring better these days. Thanks for sharing that, Frances! All the best to you!

Michelle Simmons @ Comfort Keepers®

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