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.
Image sources

Sunday, 12 January 2014

What comes...

What can be done to reduce my anxiety levels this new year? I need to know what are realistic options for me to stay and work in this country. They are so limited, I know but someone out there must be able to give me some guidance. JC can't help at all. He's never had to seek employment in his life having been in the same job 40 years. He has no idea how to help me but he knows that laws in France have so many layers even experts struggle to understand things. I asked for suggestions from a network of EXPATS in France but received no response at all.

I think I'm going to have to find some money from somewhere and hire an immigration and work lawyer who is bilingual. I found one based in Paris on the internet. Expensive? probably but I only need to know what I can and can't do. I'm not a complicated case. What are my options and how can I achieve my goal of becoming French, working to support myself and stay inside the law.

I know the cards are stacked against me but I've made it this far. In a little over 3 years I'll know if I can stay in France; if I can stay employed that long, that's the rub. It's not easy for anyone older than 50 to get a job anywhere and in a country with 11% unemployment and so many rules that create obstacles to businesses it's not surprising there are so many out of work here. My employer is bankrupt and recently had to accept a bailout from the government just to pay staff and keep open. I could never have predicted such obstacles before I left NZ.
There are many days I become demoralised and depressed but I still need to take some action even if it's going for a walk to get some gentle exercise. Last week I decided to walk to a neighbouring village and back. I'd driven past it but that's very different from walking it. You see so many more interesting details when you walk. What began as an idea for 30 minutes fresh air turned into an hour and a half of walking, exploring and stopping to take a few photos. I really don't like exercise for exercise's sake, it's boring and uncomfortable which is why I gravitated towards dance in the past and now to taking photos when I walk. It gives me an instant payback. Though it's the middle of winter right now  I figure I can find the odd day when it's fine.

This country is downright interesting to me in a way my own isn't. Much of this can be put down to the past cohabiting with modern times. I've included some example in these photos. I live in an urbanised environment but everywhere I can find rural experiences and history on my doorstep and they affect me in a positive way. My soul is quiet and peaceful in this country. I can't say the same for my head and heart. They are churned up with the fragility of my situation. Yes I know the saying that we have to accept what we can't change. Trouble is, I was brought up in the generation that said hard work and focus will get you what you want. It's not true but I'm certainly programmed to it. Maybe this new year will bring some positive change. At the least I'd like it to be no worse.

President Hollande is in the foreign media for having an alleged affair; being chauffeured around Paris on a scooter with his bodyguard bringing hot croissants for Hollande and his actress lover for breakfast. His girlfriend has been admitted to hospital since the news was announced. I suppose she's mightily upset. The French don't care. This affair is not on the news or in the papers to any great degree. The French consider what he does in his private life is private.

This is a man failing in his job (according to media reports), putting his efforts into allegedly cheating on his partner while millions are unemployed, systems fail, necessary reforms never happen and the country heads to even more credit rating falls and possible bankruptcy. Will it hurt him or will he be seen as yet another virile French politician? Probably there will be little change to his popularity ratings which are at rock bottom in France. It may damage his 'international image' though, but time will tell.