Wednesday, 24 February 2010

Grumpy granny

I took Marie and Orla to Marie's parents' mansion (too big to be called a mere house) in Weymouth last Thursday. They were staying there until the weekend, when Joseph and I would be joining them. Joseph and I stayed at home because he had to go to his friend's birthday party and to play for his team in a football match.

Marie rang me often. I knew that things weren't right, but she wouldn't tell me what was wrong. Then, on Saturday afternoon when I was driving to her parents' house with Joseph, she called the car phone. Twice. She was crying, but couldn't tell me why.

I had just got out the car when Orla ran up to me, arms outstretched. I lifted her up and she hugged me really tight. “I'm really glad you're here, daddy,” she said into my ear. “I missed you.” Marie appeared behind her. I put Orla down and Marie and I embraced. Then she revealed the cause of her distress. Orla wasn't being treated well. Grandma was constantly telling her off.

When she was very little and compliant, Orla used to be her grandmother's golden girl. A little girl, to dress up like an expensive doll – what could be better? But now Orla is vivacious, attention-seeking, noisy, never sits still, forward...the typical second child. After two more grandchildren and a lot of babysitting, Orla has become an annoyance.

What had bothered Marie most was that she was trapped in the house. She hadn't been able to take Orla away from her grumpy grandmother.

The rest of the weekend passed off with no problems. We visited Marie's sisters where I found out that grandma wasn't such a great grandmother to her other grandchildren, either.

Marie is very glad to be home again. More determined to change than ever. If it helps her to fight agoraphobia, then her unpleasant weekend was worthwhile.

* * * * * * * * * * * * * * * * * * *

"Orla, was grandma grumpy?"
"Yes. She shouted at me. Made me cry."
"But I shout at you sometimes too."
"Only when I'm very naughty."
"Weren't you naughty when grandma shouted at you?"
"No. I only wanted to go into the kitchen and get a drink."
"Sometimes people when they get older get a bit grumpy and shout a lot. You're still my good girl."
"But you're old too, daddy." [Thanks Orla!] She flashes me one of her impossibly innocent smiles, eyes wide.

There's no answer to that last comment!

"Yes, sweetheart?"
"I miss grandma."

Well, I guess the events of the weekend didn't bother Orla too much!

Friday, 19 February 2010

Agoraphobia - trying to change

Six feet tall, lean and intimidating.  That was my first impression of John.  Then he smiled, and a much nicer persona broke free.

John is a former drug user and dealer.  Depression and panic attacks forced him to reconsider the direction of his life.  John stopped using illicit mind-bending substances...and started to use the legal ones.  When I met him, he had got over the worst days, and now believed that a drug free life was possible in the not too distant future.

Marie met John in a cyberspace and he became one of her online circle of friends, all of whom have suffered from or are still suffering from anxiety disorders.  After a while, learning that John lived in the south west, Marie invited him to visit our home.  He accepted.

Sitting in my living room and chatting freely, John appeared friendly and open.  He was intelligent, articulate and soft-spoken.  He had a good, well paid, responsible job now.  When he gave up illegal drugs, he also gave up all his drug using cronies, so he didn't really have any friends at the moment (except those in cyberspace).  I liked him.  He spoke to me about his mental health problems.  He had been dangerously depressed, he told me, but therapy had given him a life-line.

"Do you do everything the therapist tells you to do?" I asked.

"Yes, I try to," he replied.  "When I do, I feel better.  I know that it's working for me.  I have mostly got over my anxiety.  I know I can get over the rest of my problems."  John went on to tell me that, on advice from his therapist, he had changed his diet and had joined a gym.  He had now embarked on a healthy lifestyle and felt that this had significantly contributed to his recovery.

Later, when John had departed on his homeward journey, Marie and I chatted about him.  She felt really pleased that John had overcome the worst of his depression.  We spoke of his positive attitude, healthy lifestyle and his attitude to therapy.

Why, I asked Marie, didn't she embrace a healthy lifestyle and follow her therapists' advice?

She replied that she didn't know.  But she's trying to change that.

And she is trying to change.  She's really trying.  She's trying to reinvent herself, to be the woman that she would like to be.  But the scale of the change is daunting her, and her lack of belief in herself is her biggest handicap.

I cannot help Marie to change.  That can only come from within herself.  All I can do is provide security, encouragement and support when required.

Tuesday, 16 February 2010

My wife has [not got] bipolar disorder

You won't normally catch me listening to the radio at 9 am - I'm much too busy - but often it's just playing away there in the background.  Then suddenly I am aware of it and realise that something worth listening to is being broadcast.

This morning was one of those times.  And the programme worth listening to was Taking A Stand with Fergal Keane.  You can listen to it too - there's a link at the end of this post.  Fergal was interviewing a married couple where the wife has bipolar disorder.  He was hearing how the disorder is affecting their lives, both individually and as a couple.  Of course, my wife has not got bipolar disorder; she has an anxiety disorder; but the similarities in how these disorders affect our relationships are many.

Read on and see if you can identify with the husband or the wife or their relationship.

The wife
The wife is aware that her disorder is a problem for her husband as well as for her.  She worries about how much of a burden she is to her him.  She doesn't want to cause him stress, distress or emotional pain.  She knows that she is, at times, needy of his time and attention.  However, she has to concentrate on "getting better"; and there are times when her disorder takes over her life and there is no space for other people's problems.

The couple
As a couple, when making plans for the future, the wife's disorder must always be a consideration.  The biggest decision - which this couple has yet to make - is whether or not to have children.  Can the husband cope with the additional responsibilities of parenthood during times when his wife is not only too unwell to help, but also a responsibility herself?  How would children be affected by living in a household where one of the parents has bipolar disorder?

The husband
The husband's main problem is loneliness.  When his wife is unwell, there is no real help for him at hand.  Society doesn't want to know about the problems of people with a mental illness or about the issues that their carers have.  The husband says that in this country, "care in the community means just one carer..."  There is no backup, no information and no support.  A physically unwell person can usually be identified by their appearance.  Not so, for the mentally unwell.  Most people can relate to the amount of effort required to look after one's physical needs, but not to look after one's emotional needs.

The husband has worries about their relationship.  For him, the good things about their relationship outweigh the bad.  But is he is the best person to look after his wife - particularly if she doesn't appear to be getting better?  He sometimes questions his ability to cope.  What if he left her - how would that affect his wife?  Could he deal with the guilt?

I can well identify with the husband.  And if I was a wife and carer, most of the same concerns apply.  Everything the husband says about his relationship worries are issues which I have considered or am still considering.  Also, the husband is totally accurate about the lack of support for the needs of the carer, and the isolation that most carers experience.

The husband recognises the support of his parents.  I have the support of my adult daughters.  How carers without family support exist, I really don't know.

The link
To listen to the programme, click here.  The programme lasts 30 minutes and you'll have to endure a couple of minutes of other stuff before it starts.

A parting thought
Fergal asked, but wasn't answered, how the wife felt about the perception that her husband was virtuous and stoical in his devotion to his wife?  Does she resent it?  This made me think - do people see me that way?  If they do, is that welcome?  How does Marie feel about that perception?  Do those being cared for feel that they are somehow less worthy people because they have a disability?  Does this lead to an unequal partnership inside the relationship?  Anyone care to comment?

Friday, 12 February 2010

Ancient aunts and agoraphobia

My aunt died recently, at the ripe old age of 92.  For most of her life she had been a lively, bubbly, gregarious lady.

Aunt Maud spent her whole life in Belfast, the town of my birth.  Her husband (my uncle), their family and my family spent lots of time together. We had many days out together, would stay each other's holiday cottages/caravans, and dined together frequently.  Her children were a similar age to my sister and me, and we were close childhood friends.

She became widowed when I was an older teenager but still the families met regularly.  Things changed when her daughter got married and moved about 35 miles away.  Then her son got married and moved to England to live.  I got married and my sister followed suit soon afterwards.  My mother died.  Family events ceased then.

My father still visited Aunt Maud regularly.  They went on picnics on nice days, went to the theatre, went for a meal and occasionally visited me.

A few years later, I moved to England and my father joined me soon afterwards.  Aunt Maud still kept in touch. She and my father phoned each other regularly.

Then my father died.  Oddly, Aunt Maud didn't come to his funeral.  I was surprised, bearing in mind how much time my father and she had spent together.  I assumed that the cost of travel from Belfast to England's West Country was too much.  After all, she was a pensioner living on a modest income.

Years passed.  By this time, I had met Marie, set up home with her and our first child, Joseph, was born.  I decided to take them to Ireland to see the places and people important to me.  We visited my Aunt Maud - one of my important people. She was still living in the same little house she had always lived in and she was fit, healthy and still smiling.  It was a lovely day and we went to a nearby seaside resort and had a delightful lunch at a restaurant which Aunt Maud recommended.  Afterwards we drove along the scenic coast road.  I stopped at a beautiful, empty beach.  I took Joseph down to on the beach to play, knowing that Marie, due to her agoraphobia, would have to stay in the car.  Aunt Maud volunteered to stay with her.

Later that evening, after Aunt Maud had been returned to her home, Marie told me of her conversation with my aunt in the car while Joseph and I were on the beach.  Learning that Marie was agoraphobic, Aunt Maud revealed that she, too, had agoraphobia.  She had been agoraphobic all her life.

This was a surprise to me, but when I considered this news, everything began to slip into place.  Now I knew why Aunt Maud hadn't come to my father's funeral.  On family outings, the adults would always sit near the cars.  Aunt Maud never visited us on her own.  When we went out for a meal, it was always Aunt Maud who picked the restaurant.  I never knew her to take a bus trip anywhere - my father used to drive her around in his car.  Her children and grandchildren who resided in Ireland quite often visited her, but she rarely visited them - requiring them to first come and pick her up in their car.  She never visited her son's home in England and seldom saw her English grandchildren.  For most of her later years, she spent the majority of her time sitting in her house, connected to the outside world only by her telephone.  She was able to go to the local shop and Post Office - until the government closed the Post Office and the shop became uneconomic.  After that she had to rely on her home help for shopping.

After that trip with Marie, I called to see my aunt every time I went to Ireland.  I always took her out - to a place of her choice.  I know that she really enjoyed these outings, although heart problems meant that she was becoming increasingly frail.

When I tried to call her on her 92nd birthday, the phone had been disconnected.  I phoned my cousin to find out why.  Aunt Maud, he informed me, had become too ill to look after herself and had to be moved to a nursing home (thanks for letting me know at the time, dear cousin!).  In fact, she was so anxious about this that she had to be sedated so that the move could be effected.  She never settled in the nursing home and died, friendless and with no family nearby, soon afterwards.

Aunt Maud, if I'd known how ill and unhappy you were, I would have flown over to see you.

I'm sad.

Agoraphobia can be a hateful affliction.

Wednesday, 10 February 2010

Anxiety sufferers corner

I thought it was quite unusual when I found out that my new next door neighbour has agoraphobia.

But what are the chances of the lady next door to her also having agoraphobia?

Pretty remote, I hear you say.  And you'd be right.  But yet, it's true.  She has.  Which explains why until recently I had never seen her.

There is a chap with a little Scottie dog called Bob who lives next door to my next door neighbour.  The chap is called Bob, not the Scottie dog.  Bob is in his early 60's, I'm guessing, and very pleasant.  We both walk our dogs, and when we meet he will chat to me about the weather and other similarly interesting topics as his little dog checks out my dog's genitalia, and vice versa.  I knew that he had a partner living with him.  He mentions her sometimes.  But I don't remember ever seeing her.

When my new next door neighbours moved in, Bob introduced himself and offered his assistance should they need anything.  From time to time, my neighbours would see the shadowy image of a lady moving around behind the net curtains of the cottage.  But why did she not ever appear outside?

Sometimes they would speculate about this.  She might be being held there against her will - a sex slave or something.  An illegal immigrant.  Or a recluse.  Or some type of ethereal being - not a real person at all...

One day they spotted a lady getting out of Bob's car.  Introductions were exchanged.  She was Bob's partner.

"You won't see me outside often," the lady said.  "I'm a bit agoraphobic."

An agoraphobic neighbour on both sides?  That was something they had never considered.  They swapped symptoms.  Seems this lady has mostly recovered from her agoraphobia.  She can go most places that she wants to go to.  She just feels uncomfortable sometimes and prefers to stay indoors.

What's more, her partner, my neighbour with the Scottie dog, Bob, has anxiety issues too.

Could you live in a village like this? 
I'm thinking of starting up a colony for anxiety sufferers.  There are five here already, living in three adjacent houses.  A little anxiety sufferers' corner.  Want to join our colony?  Contact me and I'll put your name down on the waiting list.  As properties in close proximity to our ours become available to rent/purchase, I'll contact you.  

We could have our own self-help group.  We could bulk buy therapy sessions.  Specialist doctors specialising in health anxiety could move to the area.  Disability payment claims could be made en masse.  Local shops could be forced to become agoraphobia friendly.  They would have to open at midnight once per week to accommodate social anxiety sufferers.  Anyone else have similar suggestions?

In time, anxiety sufferers could become the majority of the population in this area.  Folk without anxiety issues would be the odd ones.  How weird would that be?  "He's a bit eccentric," you would hear locals say about a newcomer, "he's never had a panic attack!"
photo © Richard Knights

Monday, 8 February 2010

Autism - my son's visit

Colm visited us on Friday at midday, as arranged.  Collette and baby Lucas were here too.

I had several very urgent matters to attend to in my business...but I thought, hell, family is more important, so I took most of the day off.

Colm seemed to be good form and decided he wanted to stay until 7 pm, after dinner.  After briefly chatting to us and telling me that he wanted to phone his mother (so it wasn't just a flash in the pan),  he went into the kitchen to be by himself and to watch tv.  He likes his own company.   I tried to contact his mother, but there was no answer.  Colm didn't appear to be too worried by this - it's rare for his mum to answer the phone when we ring.  He went back to watching tv and eating everything in the house.

Around 4 pm, as Collette was getting ready to go home, Colm's (and Collette's) mother rang us.  Colm was overjoyed.

During the ensuing conversation, Colm's mum arranged to meet him when she comes to see her grandson, sometime in March.  She's going to take him on a shopping trip.

Uh-oh...  Shopping trips with mum are always trouble.

Colm handed me the phone.  "Mum tell you come March" he informed me, which meant that his mother wanted to explain to me about her forthcoming visit.  I was relieved to learn that she hadn't given Colm a firm date for her visit.  And no, she didn't want to talk to Collette just now.  

Colm always communicates using truncated sentences.  You get used to them after a while.  Makes you realise just how few words you really need to convey information.  

After the call ended, Colm asked Collette to take him back home.  My house is, he informed me, "wee bit boring".  I like it when Colm wants to go home.  It means that he's happy there.  It wasn't always like that...

Colm has been more relaxed since his visit home.  He is apprehensive about seeing his mum, but I told him that it wouldn't happen until the end of March or April.  If he's given a fixed date, he obsesses about it and, close to the time, has the worst anticipatory anxiety you can imagine.  I can easily persuade his mother not to take him on a shopping trip - they always end in disaster - she can take him to McDonald's instead.  That will please him and it's a much less threatening environment.

* * * * * * * * * * * * * * * * * *

Collette later told me that, despite offering her the use of her spare room, her mother's visit is only going to be a day trip.  So she's not going to be the doting grandmother, then...  The photos which follow show what she's missing at the moment.

Wednesday, 3 February 2010

Autism - my son, his mother and the law

Colm has been exhibiting challenging behaviour over the last couple of weeks.

This happens when things aren't going the way he wants them to. The sort of things which wouldn't particularly bother you or me. Here's what was bothering him –
  • His arm was in a plaster and he was fed up with it
  • He wasn't able to see his new nephew for over a week, because he was hospitalised
  • He was upset by the effects of the earthquake in Haiti
  • The tumble dryer at his house had broken down.
Colm could have dealt with each of these problems on their own, but not all of them at the same time.

Colm's often can't explain why he is upset, so he will complain about something else – usually something else which he cannot change.

On this occasion he demanded to speak to his mother, visit her and stay with her for a week.

Seem like reasonable requests?

Colm has only seen his mother four times in the last 10 years. Two of those times were at his sisters' weddings, when both of them were present at the receptions. He only spent a couple of minutes with her on each occasion. On the other two occasions, his mother and her boyfriend at the time took Colm out for a meal and shopping. Both trips ended disastrously. On the first occasion, Colm's mother was banned from visiting his previous home by the management. On the second trip, she ended up leaving Colm, alone in my house for nearly an hour.  She does try her best, but unfortunately she doesn't know her son. Being autistic, Colm cannot be forced to do anything he doesn't want to do, but she still hasn't worked that out.

Colm speaks to his mother twice a year – on his birthday and on Christmas day.  Conversations last 1 – 2 minutes.  There used to be more phone contact, but Mum often didn't call when she had arranged to, or wasn't in when she was supposed to be. Colm, to whom routine is essential, is not able to tolerate this kind of behaviour and that is why there are just 2 calls per year now. In any case, Mum has never objected to this or asked for more contact.

So I had a dilemma. Should I let Colm contact his mother – and risk it upsetting him even more? What if she arranged to see him? I could handle the 4 hour trip to her home, but what about the 4 hour return trip with a potentially very upset young man?

I sought advice from his social worker, and she explained the current legal situation. It seems that Colm, and any other adult in similar circumstances, has the right to contact anyone of his choice – in this case, his mother - even if the receiver of the call doesn't want it and/or it would be a very upsetting experience for him – even if this course of action is likely to be detrimental to his state of mind. No one has the right to refuse this to him, without getting him officially declared “unfit” to make that decision. If things go badly, those who care for him have to deal with the repercussions as well as they can.

Colm lives semi independently in a house with 2 other lads, both of whom also have autism spectrum disorders. A team of carers monitor them 24 hours a day. I arranged with the carers to delay any contact with Colm's mother until he visited me. He is rarely distressed when visiting me or his siblings, so that would be an opportune time to call his mother. Or if we get lucky, he'll have totally changed his mind by then, and won't want to speak to her until his birthday in May.

Colm is visiting on Friday. It should be an enjoyable visit for him – sister Collette and her baby, Lucas, will also be here. Additionally, his plaster is being removed tomorrow, so that will be another of the causes of anxiety removed.

Wish us luck. I cannot express how heartbreaking it is to see Colm when he is distressed. And it must be 100 times worse for him...