Tuesday, 30 October 2007

Caring for the Carer of an Agoraphobia Sufferer

Imagine this... Take a foot-shaped balloon and fill it full of water. Now overfill it, until it becomes deformed. Colour it angry red with purple and dark red blotches, and give the surface a scaly appearance.

Not a pleasant image? That was the reality of the appearance of my foot last week. It was worse than this. I had a quite severe case of cellulitis. It started with a fever and within 12 hours, I was unable to walk too. Yesterday was the first day that I was able to walk better than a pathetic hobble; and I'm quite a lot better today. But never mind me...

Marie's anxiety increases when I'm unwell. I'm sure that she hopes that (a) it's nothing serious and (b) I'll get better soon; but it comes out as "Will you have to go to hospital?" (she would have to stay with someone else while I was there), and "How are the kids going to get to/from school/nursery?" (someone else will have to take them). On this occasion normal treatment did not require a visit to the hospital and Joseph has been on a half-term break from school. Marie has been looking after my needs and has been (as usual) very caring.

When I can't stay with Marie for any time more than a day, she goes to her parents' home. We didn't need that this time, but Marie did have them take the children to stay with them for a week. It was either stay with their grandparents or stay imprisoned in our home. I often work at home, but as luck would have it, some of my staff were on holiday and I was supposed to be working away from home in a different town. Marie is able to work, but only in the premises beside our home. I had to ask some of my staff to work in different premises and change their hours so that Marie could work here and free them up for another site. I am extremely fortunate to have helpful, flexible staff (who know my situation) and between us all, everything in the business is running smoothly.

Collette has been ferrying urgent supplies into our home as required and a large order for groceries and other mundane domestic supplies was made online to be delivered tomorrow. The parents of one of Joseph's school friends has agreed to bring Joseph home from school this week and the lady running the nursery is to look after Orla when required and collect and deliver her. My very understanding doctor has offered to make a house call because I can't leave home while Marie is at work. He's not obliged to do this - isn't he fantastic? And the pharmacy delivers my medication.

So you see that we have a well-oiled machine here - all geared to Marie's agoraphobia.

But it would take so little to make it all grind to a halt.

What would happen if I became more seriously ill and Marie got too stressed to stay here? Or if I was hospitalised? Where would Joseph stay to avoid missing school? If Marie's parents couldn't look after her, who would? Would one of her sisters take time off work to care for her? Who would look after me? Who would care for the carer? I'm sure that there are lots of carers who would have trouble answering the same question.

It's not easy, looking after an agoraphobic.

Tuesday, 23 October 2007

A New Home for Colm, another Wedding and another Baby

Last weekend was really busy.

On Friday evening, we went to Exeter hospital (psychiatric ward) to see Colm. He was in good enough form, but anxious about his forthcoming move to his new home. That was the week's best news. Colm is to move out of the hospital in the next couple of weeks, when his new accommodation is ready. It's not the home we had looked at a month ago - he is to live in a 3-bedroom detached house with 2 others (with 24-hour care). He's got his own bathroom and satellite tv. He's going to be working, part-time and fully supervised, at the nearby Riding for the Disabled centre where he will be able to resume his equestrian pursuits. The house is situated in friendly residential cul-de-sac in a village about 30 minutes' drive from here. He will be a 10 minute drive from 2 of his older sisters, and a third is moving into that area soon. So he will have plenty of family around him. Now Marie and I can look forward to less stress in that part of our life.

On Saturday morning, Collette called round to discuss her wedding plans. She only got engaged 12 days ago, and at that time she told everyone that the wedding would be a some unspecified date about two years in the future. Now she's decided to get married next April. (No, she's NOT pregnant!) Collette's mother doesn't figure in her life, so it's up to Marie and me and her sisters to put it all together. I know that it will all work out well, and we can look forward to a joyous wedding day. However, Marie is already getting anticipatory anxiety...

In the afternoon, we went to Carla's house where Lee's birthday was being celebrated. Colleen & Collette and their men and loads of beer were there too, so there was lots of noisy fun.

And then on Sunday, we went to Marie's parents' house to see her sisters. Her older sister, Karen, had travelled from her home in Brighton. It was her 39th birthday the following day and this was the day for the birthday cake and presents. Her other sister lives close to her parents and brought along her husband and delightful little son (see picture). Karen announced that she is pregnant. The baby is due next June. For many women, 39 might be a bit old to start having children, but former footballer (soccer) Karen is in peak condition and there is no reason to anticipate any complications. Much joy and happiness all round.

Despite all this happy news, almost all of the recent improvements in Marie's agoraphobia have disappeared. She had a stomach bug last week and hasn't been driving anywhere. At her parents' house, she needed the security of her oversized bag at all times, and didn't venture outside. There is a short school holiday now, so I am hoping that she'll be back driving to school with Joseph later next week.

Friday, 12 October 2007

Our Beach

We live in a small, ancient, sleepy coastal town with narrow, quaint, irregularly shaped streets. We’re surrounded by beautiful scenery and loads of history. In the height of summer, an influx of tourists makes our population quadruple. At this time of year we get older tourists and walkers – people without children. Most of these ignore our beach, so when I took Orla there this afternoon (Joseph was at a friend’s house), we had it to ourselves.

After expending her initial, frenzied, just-got-free energy, Orla settled down to play in the sand.

It was quite late in the afternoon and the sun was getting low in the sky. It was bright, warm and calm. Cotton-wool clouds moved at a snail’s pace. The sea was softly lapping the sand and rocks while sea birds drifted effortlessly overhead (falcons nest in the cliffs which surround the beach and are beautiful to behold when in flight, but they were absent today).
Far out to sea, there was a small fishing boat bobbing gently.

Only the sounds of nature were audible.



This beach is only 100m from our home, but it is inaccessible by car. It’s about 20m from the road and surrounded by cliffs. You have to walk to it. But because of that, even though she has lived here for the last 8 years, Marie has never seen it.

One day…one day, Joseph and Orla and I are going to take Marie to that beach. That’s a promise!

Wednesday, 10 October 2007

Agoraphobia and Random Events

Marie has been more anxious than usual for the last week, and this is why.

Yes, the road outside our home was closed on Monday to have work carried out by our local water company. Despite the sign, the road was closed for three days – only opening this afternoon.

Marie can’t tolerate being confined. It causes exactly the same panicky feelings as being in a wide open space. So having the road outside our home closed was cause for concern. Even before the road closed, we had a few days of anticipatory anxiety. Actually, Marie’s anxiety level was better this time than the last time the road was closed.

Anyhow, it made me philosophise on the way that random events totally outside our control can affect our lives. And how, if we’re having a bad day/a few bad days, perhaps it has more to do with things around us than it has to do with us.

I’ll have to try to remember this next time Marie is feeling worse than usual!

Monday, 8 October 2007

Less Anxiety - More Indicators

As well as the common symptoms of agoraphobia, Marie has other issues.

I have mentioned before that she has a very large handbag (purse, I believe, is the US term) with a shoulder strap. She keeps it fairly full and quite weighty and it only leaves her shoulder at home, in our car and in other rare occasions when she has little anxiety. This is, of course, a symptom of obsessive compulsive disorder and Marie also has other, less extreme symptoms of this.

But in addition, there are other more bizarre things which make
Marie anxious. One of these is hair shampoo/conditioner. At its most extreme , I have to administer these to Marie or she cannot wash/condition her hair properly.

Another is going to the optician's. When she tried to do this some years ago, she had to leave before the examination was complete. Based on what evidence he
had collected, the optician took an educated guess at what kind of lenses Marie required. He did quite a good job, too!

So it was with some surprise that Marie informed me that she was going to have her hair permed. Here's the "before" picture...

Marie organised a hairdresser to call at our home and do the perm there; but nevertheless since it involved washing her hair and then having perming lotion on it hair for quite a while, it was quite an achievement for Marie.

Then, knowing that her eyesight, even with her glasses, wasn't at its optimum for driving, Marie made an appointment at the local
optician's. I drove her there, of course. Marie wanted me to go into the building with her but there was no legal parking space available. Still, Marie went in to the optician's by herself while I parked illegally (but safely) outside and waited in the car. Marie managed to stay for the entire examination without much anxiety, and then spent quite a while choosing frames. A week later, she took possession of her new spectacles. Here's the "after" picture, showing the permed hair and new specs...

With Marie maintaining her earlier small steps out of agoraphobia, it seems that we still have an improving situation. Happy days!

Thursday, 4 October 2007

Dental Treatment, Agoraphobia & the NHS

Since I've known Marie, she has always had trouble with getting dental work done. For example, she would have benefitted from having a dental brace, but couldn't deal with having a permanent structure fitted inside her mouth.

However, having a caring, sympathetic dentist, and knowing that her diet was about as good for her teeth as heat was for ice cream, I eventually persuaded Marie to have a checkup.

One of the Marie's first symptoms of heightened anxiety is the "dry mouth". Next comes the feeling that she won't be able to swallow. To obviate this, she carries a bottle of soft drink, sometimes just water. For years, Coca Cola was the drink of choice, to the extent that she began to believe that only Coke would be able to help her when her "dry mouth" was starting. What is the best thing you can give to your healthy teeth if you want holes in the enamel? Yes, sugary fizzy drinks - e.g. Coca Cola.

There was good news from the dentist - she wouldn't have to have work done on all her teeth. The bad news was...well, you've guessed it, work needed done on most of them. And even worse - some might have to be extracted. The dentist took x-rays to complete the examination and we made another appointment.

Marie was doing quite well on her return visit to the dental surgery. The dentist gave her local anaesthetic - lots of it! This was the problem...the local anaesthetic administered to the rear of the roof of her mouth caused her to lose feeling in her throat. She couldn't feel herself swallow; she wasn't sure she WAS swallowing; she wasn't sure if she COULD swallow. Result - panic.

Marie managed to hold back the panic enough to avoid a full-blown attack. The dentist caried out some of the necessary work. However there was no way she was going to go have that type of local anaesthetic again! So she didn't return to the dentist for a couple of years. And then it was only because she had a pain in her jaw which, by comparison, made the pain of childbirth dwindle into insignificance. The pain was the result of the mother of all abcesses.

The dentist looked into her mouth and spoke in a monotone. This tooth would have to come out...and this one...oh, and that one too....and probably that one. Oh! and maybe that one too. This one needs a major filling, and so does that one. This one needs attention and that one needs attention... And on and on and on he droned. Marie asked him if she would need a local anaesthetic in the roof of the mouth again, and he said yes. She told him that she wouldn't be able to cope with this and explained why. What was the alternative? The only alternative he could offer was to refer her to the dental hospital, 25 miles away, where the gamut of dental treatment alternatives was available. It would probably be a few months before she could be seen. In the meantime she would have to take antibiotics.

So it was that a few months later Marie set out with trepidation to the dental hospital with her chauffeur (me). We had already carried out a reconnaissance of the facility and organised a parking space right beside the entrance. I reported our arrival to reception, which was too far away from the door for Marie, while she fidgeted at the entrance, frequently sipping bottled water to alleviate her "dry mouth" (she doesn't have Coke any more). After a couple of minutes to me, but a couple of hours to Marie, we were ushered into "our" dentist's treatment room. The dentist, a sensitive and empathetic 40-something lady who was five feet in height AND around the waist perched on a typist's chair with only one bum cheek - the other wouldn't fit - and explained the choices of treatment. These involved various local anaesthetics with different effects, a spray that freezes a specific area, a mixture of nitrous oxide (laughing gas) and air, various mixtures of the aforementioned or the full-blown general anaesthetic. The last option was the least favoured by the dentist because it carries the most risk to the patient.

After 45 minutes, Marie chose the local anaesthetic which, she was told, wouldn't affect her throat so much. Much to our surprise, we were told that was the end of the consultation. We would have to make another appointment for the treatment.

More antibiotics and another few months later, we were back at the dental hospital. The nice lady dentist (who I noticed only just fitted through the door-frame) led Marie into the treatment room and told me to wait in the waiting room. "We won't need him" she told Marie.


An ashen-faced dental nurse rushed into the waiting room. "Robert, please come straight away. Your wife has had a panic attack!" Trying to hide my anxiety, I followed her into the treatment room. Marie, seated, looked OK.

"Ah Robert (giggle, giggle)" said the dentist looking guilty, flummoxed and knackered simultaneously and sounding dangerously like the doctor on The Simpsons. She was greeting me as if I was her long lost brother, "Marie has had a little (giggle, giggle) eh...turn." And she added quickly, "But she's alright now" and then "She'd probably better go home now." Marie got up and we left.

Once in the car, Marie told me that the local anaesthetic had affected her almost exactly the same as the one our family dentist had administered. It had made her panic and she wouldn't let the dentist near her mouth, screaming and flailing all around her. The hospital dentist told her that she'd never had anyone take a panic attack in her room before. I don't think she wants it to happen again, either!

This time the hospital made another appointment for Marie. No more options, it was to be a general anaesthetic this time. Operating theatre. Seven teeth were to be removed. The rationale was that all the teeth which might need to be removed in the next few years would be removed at this time. "We don't want you coming back in six months' time and have to do this all over again." Fair point. The operation was to be in a different building and I couldn't park right outside the entrance. Marie had very heightened anxiety for the entire six weeks' wait for the procedure and became quite difficult to live with. However, the big day eventually arrived. I stopped outside the entrance door to the building which houses the operating theatres and led Marie to the very helpful receptionist just inside the door. She looked after Marie until I parked the car and returned. Then we had to go about 20m (22 yds) to wait for the dentist and change into a hospital gown. This was already much further away from the entrance than Marie was comfortable with, but she coped. Ten minutes later, the dentist arrived, all scrubbed up and clad in a (very large) pea-green outfit c/w miniature wellies and we had to walk yet another 20m to the room where Marie's anaesthetic was to be administered. Amazingly, Marie was fine walking there, but her anxiety rose sharply when she was presented with the needle. Seconds later she was unconscious and I took her handbag with me to the waiting room - the first time she had been separated from the bag in several years.

After a few hours, dental treatment complete, Marie (now reunited with her bag) was giving a good impression of a drunk woman trying to get into a car, and then we went home. Within a week Marie's gums had mostly healed and her anxiety level returned to normal (Marie's normal, that is). Without examining the inside of Marie's mouth, you wouldn't know that she is missing any teeth at all. Quite amazing!

She's just had a checkup. Everything is the way it should be.

The National Health Service may be slow, but the care that Marie received in this matter was definitely world class - and free! I was pleasantly surprised how much consideration was given to Marie's unique requirements and cost was never an issue. Well done NHS!

Wednesday, 3 October 2007

Help With Caring For An Agoraphobic

Marie's agoraphobia requires a "safe" person to be with Marie at all times. She cannot stay anywhere on her own - even for a minute or two.

When I started to go out with her, one of her "safe" persons was Emily. However, soon after we began to live together, Emily was removed from the safe" persons list because she can't drive. In the evenings and at weekends, we started to rely on my family to look after Marie on the occasions when I had to go somewhere that Marie couldn't. (During the day, I had members of staff who were on the "safe" persons list.)

We started off with relying on Carla and my sister, both of whom had cars at that time. Usually Marie would go to their houses while I went elsewhere, or, less frequently, they came to our home.

Here are my oldest daughters. From left to right, Carla, Colleen and Jenna. Collette is at the front.

In 2002, Colleen got her driving licence and she was added to the "safe" persons list. In 2004, my sister moved away and Collette passed her driving test, so it was up to my three daughters to help me with Marie's care. This was quite a good period, because one or two of Marie's "safe" persons lived in the family home. In 2005, Colleen left the family home to move in with her boyfriend: Collette did the same last year. More recently, Jenna became a "safe" person, even though she doesn't have a driver's licence; and within the last couple of months, Sharyl has joined the list, too.

I am a lucky man. My sister and daughters have often gone out of their way to assist me by sitting with Marie - and my daughters may have to continue doing so for some time in the future.

Here I am on the day of my wedding with my four oldest daughters.

My daughters are a great bunch of girls, and I'm proud to be their father.