The Reluctant Carer

Doctors

2007-09-09T11:21:00.000Z

I love our doctor. She has been like a family friend for the past twenty years: seeing us through births, teething and fevers. Now there is HD and it seems almost childish to say that she has taken this so seriously that all other family needs are excluded. I go to see her, and she asks how Roo is doing. I feel desperate and we discuss Roo's mental state. It has become so bad that when I found a breast lump, I visited another doctor, because I was sure that my own doc would end up discussing Roo's man boobs.

On Friday she came to visit Roo at home. Friends, I hoovered. I cleaned. It was far from spotless, but it was the best I could do. So I was both hurt and surprised when she criticised the small pile of toys that the children had left on the floor. She said it was dangerous and that the children needed to be reminded that daddy wasn't well. Quite honestly, they don't need reminding, they live with it constantly.

I wonder whether others have had this experience of feeling that their needs as a carer and their children, are overshadowed, by the seemingly more pressing needs of the person with the disability?

Dependency

2007-08-30T09:35:00.000Z

Roo is becoming more and more child-like. He depends on me for basic needs like food, clean clothes and comforts; but increasingly he is relying on me for emotional support and reassurance. It is this which I find hardest. He reminds me of Sweet-Pea who is 5. She likes to be close to me and prattles on in her childish way about inconsequential things. Whilst this is endearing in her, the same behaviour in Roo is infuriating. I often feel completely wrung out with nothing more to give. I become cross with Sweet-Pea, and then the spiral of inadequacy and guilt begins.

Shopping List....for garbie

2007-08-28T07:24:00.000Z

Chocolate (copious amounts of Green & Blacks with butterscotch )

Artificial bluebells

Large bottle of gin

DVD 'The Sound of Music'........after a few gins, Roo and Christopher Plummer merge

Box of tissues for the ending: when I realise that there aint going to be any skipping over Alpine mountains

I'm Back!

2007-08-27T08:00:00.001Z

Well my fingers are busy tapping, although a large part of me wants to crawl away and forget that I'm a carer. I've been so touched by your comments and support and I'm sorry for neglecting the blog. Yes, I was disillusioned by negative feedback to honest postings. But I'm a big girl (well actually, I'm a skinny thing) and if I publish stuff; on the internet or elsewhere, then I have to be prepared for what follows......so here I am, ready and waiting.
A brief catch-up.....more to follow. Roo is becoming more dependent on me in daily tasks. Whilst this helplessness is bloody frustrating and time consuming, it also taps into a vein of compassion that leaves me feeling paralysed and angry in the face of an ugly and progressive disease. Some days, I manage to do things with grace and humour. On others, I can't even bear to be in the same room as Roo.
The bluebells have died. The rampant grass in the back garden is full of dog shit. But Sweet-Pea was skipping yesterday, because her tomato plant has yielded its first tomato.

Bluebells

2007-05-28T08:17:00.000Z

Now I like bluebells, especially woods filled with them. But I was rather surprised when in response to my desperate plea for a children's social worker, regular respite and some yoga for my bad back (ok, so this last request was stretching it a bit), I was told to go and look at bluebells. This was from a professional who looks after the needs of carers so she should know her stuff?
So we drove to our nearest bluebell wood and contemplated the nodding heads of bruised purple. I felt momentarily uplifted and restored. However, it didn't solve the other problems. After all, bluebells only flower for one month of the year. What shall we do for the other eleven months? Aaahhh, I'm sure that I can hear some professional suggesting that I go and meditate on a dandelion. Far cheaper than social workers, respite or yoga.

Absence

2007-05-23T05:38:00.000Z

I'm sorry for the huge gap between posts. This has been for two reasons: an inability to sign in to my blog, and the need to process a climactic event.
Honey, is a fairly typical 8 year old. He is curious about things and asks innumerable questions. I like this phase, and whilst I often don't have the answers, I try to point him in the direction of somewhere or someone who does. However, I wasn't prepared for his questions about Huntington's Disease. When he asked if a friend's daughter had it or was going to have it, I felt a lump of ice sinking inside me. I mumbled incoherently and changed the subject. But I went away and thought about it, just as I'm sure he did. I knew that he was asking whether he would get HD one day, which of course he might. I would be cheating him, by not telling him the truth. So the next day, we were sitting on the beach, wrapped in blankets because it was cold, digging a moat for our castle. Honey and Sweet-Pea started talking about HD and whether you are born with it. I joined in the conversation, and talked about genes in very simple terms.
'So I could get it then and so could Sweet-Pea?'
I nod. There's a silence whilst he considers this.
'Well I hope she gets it and not me. Can we get an ice-cream now?'

A Gathering of Garden Gnomes

2007-04-29T07:31:00.000Z

Every two days, Arsey, Honey, Sweet-Pea and myself gather in the garden. Gnome-like, with arms folded, heads nodding vigorously, we praise Roo's lawn. He is very proud that he still manages to cut the grass, and calls us to admire his work. There's one slight difficulty; he hasn't actually cut it. For the past hour, he has paced and pushed a lawn-mower that he forgets to plug in. It's safer I suppose. But the grass is getting longer.
Pass me a toadstool.

Charts

2007-04-25T23:39:00.000Z

I have to confess that when it comes to parenting, there are times when the teacher in me emerges. In looking around the home, there are all sorts of charts. We have sticker charts for good behaviour and wall charts for routines and tasks, that largely get over-looked. When our cat had kittens, we had multiple charts marking growth, stages of development and even use of litter trays. So it came as no surprise, when Honey and Sweet-Pea announced that they had made their own chart.. I followed them upstairs where they proudly revealed their piece of paper with pencil marks and a seemingly random assortment of boxes and colours. I made the customary, soothing and matenal tones of 'umm, interesting, now tell me about it'. I wasn't quite prepared for Honey's explanation that it was a way of counting the days until daddy went to stay at Moo's. Nor Sweet-Pea saying that 'it's not long now 'til we have you to ourselves.' Sometimes you don't need words when you have a chart.

Reflections from a Hippo

2007-04-22T11:42:00.000Z

I've thought hard about the comments I had to the post on 'Hairy Bits'. I'm sorry for any offence that I caused by my bluntness. I suppose that I'm learning that the things we say in conversation between friends, aren't always appropriate in writing. So in blogging as in caring, I make mistakes. But in becoming a successful writer, I'm sure that I will make lots of those. I've also thought deeply about the sentiment behind my bluntness. It certainly doesn't stem from cruelty or malice towards Roo, but from a genuine frustration and at times desperation with a cruel situation. If in identifying the black humour in this, helps myself and other carers to cope, then good.
In a recent post, I talked about little things making a difference and allowing me to carry on. It's also true of little things sending me into a gloom of despair. Having to learn how to shave Roo, was potentially one of those. During that particular day, I had been up in the night with Honey having nightmares, met with a grumpy bank manager, helped Arsey with his GCSE coursework, and attended to the minutiae of family life. No way, was I going to embrace the prospect of more shaving with composure and acceptance. The post diffused the situation.......for me at least.
Sometimes, like a hippopotamus, I'll have a good wallow, feel better for it, and move on. I recommend it. There's a lot to be said for hippos.

Hairy Bits

2007-04-19T05:50:00.000Z

A bristly Roo, asked me if I could shave him. I felt rather aghast at this. I have enough trouble keeping in check my own body hair without taking on his. If you're a woman, there's loads of the stuff. Underarms, legs and of course the 'bikini line', which is a polite, and in my opinion, unnecessary euphemism for rogue pubes. Well, at least I don't have to worry about Roo's 'bikini line'. How do male carer's manage? It must come as a huge shock when they are confronted with taming their piglets' body hair. They require a map and instruction manual. As for me, I'm going to do it properly and master the art of cut-throat shaving. If there's a slip......well too bad.

Little Things

2007-04-16T11:55:00.000Z

I have been struggling over the past week. Overwhelmed, by the magnitude of HD and it's trail of problems. Yet, oddly perhaps, in the middle of this drama, I have had inordinate joy from small pleasures. I sat with Sweet-Pea yesterday afternoon, wall-papering the dolls house. We pasted walls and trimmed edges, cooing over William Morris prints, whilst sitting among the debris of our own house. But it's alright, because the doll's house is elegant and tidy.
In a corner of my bedroom, sits a desk. When I wake in the morning, dreading the day ahead, I look at it's battered edges. It sits there; solid, old, with it's pretty carved legs, waiting for me. And I remember why I am inherently a lark; who revels in the hiatus of early mornings. I love the silence, that sense of existing in pure nothingness, before it's filled with the needs of others. A good book, hidden stores of chocolate and my lovely desk. Little things to blot out the big things.

Mooning

2007-04-14T08:46:00.000Z

I'm a fairly open, uninhibited kinda gal. I thought nothing of skinny dipping in Florida (although 'well-meaning' friends have since pointed out the prevalence of alligators in the Everglades.....but hey they weren't interested in my bony body, so why worry). I'll have a go at most things without feeling self-conscious, and I think nothing of gyrating and foot tapping, in public, if some music grabs me. However, I'm uneasy with Roo's disinhibition. He's taken to wandering around the house at night, naked. It's uncomfortable for teenagers, especially if they have friends over. I also wonder whether it will get worse. His white buttocks seem to haunt the house with a luminosity that's hard to ignore. Kit, our young cat is particularly fascinated, and last night he may have solved the problem.

Roo streaks through, buttocks bared;

The children cringe, the cat is scared.

Avert our eyes from dangly bits;

A howl of pain; a lunge from Kit.

Thanks Kit.

Mantra for Birthdays

2007-04-10T08:06:00.000Z

I carefully place Honey's new bike in the hallway,so that he's surprised when he comes down for breakfast. Roo trips on it, displacing the saddle. Another job for the tool-kit.
I must not kill Roo on Honey's birthday

Roo has eaten Arsey's Easter Egg.
I must not kill Roo on Honey's birthday

Roo tells Honey that the gears cannot be used off-road, which of course they can. Honey is very disappointed.
I must not kill Roo on Honey's birthday

Roo tells Honey that he can only use 1st gear
I must not kill Roo on Honey's birthday

Roo tells Honey that he must hold the guitar upside down, and strum with his left hand.
I must not kill Roo on Honey's birthday

Roo spills the coffee....and insists on clearing it up with a soggy t-shirt.
I must not kill Roo on Honey's birthday

The cat's sick on the bed (ok, so that's not Roo's fault, but by this point in the day, he is to blame for everything).
I must not kill Roo on Honey's birthday

Roo tells the neighbours that I won't have sex with him. They are elderly and shocked (not sure if they're more shocked by his disinhibition, or the fact that I don't give him what he wants).
I must not kill Roo on Honey's birthday

Roo pushes Sweet-Pea on the swing, but he pushes her so hard that she flies off the swing, and lands on her bum.
I must not kill Roo on Honey's birthday

Roo follows me around whilst I make the birthday tea. There is a near miss with the candles.
I must kill Roo on Honey's birthday

What's Sanity?

2007-04-09T07:13:00.000Z

Stanne wrote yesterday about questioning her sanity. I think you're as sane as me stanne, if that's any comfort to you?! It does seem to me that when you're caring for someone with HD, your own mental limits are continually being tested. Parts of this week-end have been hellish. I've been pre-occupied with financial worries, whilst Roo has gone on about wanting to leave me. Hurray, you hear me shout. Not quite, it's a loop we've visited many times in the past. He wants to leave, but that's as far as it goes. He says 'it's' bad for the children (in front of the children), but that he's going to stay with them until the end. He's unable to process his thoughts and feelings, to a conclusion or state of action, so he keeps repeating the same statements. It's hard to know whether he's genuinely unhappy, or if he's just latched on to another obsession. By Saturday afternoon, we'd all had enough. So Arsey went to a friends, whilst Honey, Sweet-Pea and myself sat in a bookshop reading, until we reluctantly dragged ourselves home to Roo.
It's hard enough caring for someone you want to be with; difficult to look after someone you don't and bloody impossible when they don't want you to. Yet, somehow I will dig deep, recover my 'Let's Pretend' face, and find the resources needed to give Honey a happy birthday.

Parallel Worlds

2007-04-08T08:32:00.000Z

At Christmas, Moo gave Honey a portable CD player. He loves it and listen to it on journeys and at bedtimes. I was therefore surprised when she announced that she was buying him another one for his birthday. She said that it had been such a success, he should have two. Feeling rather bemused by this line of reasoning, I pointed out that the one he had worked very well. Moo said rather defensively, that she had discussed it with Roo who also thought it was a good idea! At this point, I began to question my own sanity. What was normal? Was my reasoning flawed or was theirs subverted? Am I surrounded by nutters or am I the nutter? Moreover, she has managed to get him the same model, so that when he unwraps it, he won't be surprised! Yes, if we follow this line of reasoning, I'm due to receive another slow cooker.
The children are usually courteous when they open presents. But I'm beginning to wonder, with a mixture of anticipation and dread, what Honey's reaction will be when he opens the same present that he received at Christmas. Pretty certain, it won't be 'hey, cool, another one'. He hasn't yet said 'Bloody Hell'. But there's always a first.

Air Guitars

2007-04-06T07:20:00.000Z

I'm fantastic on the air guitar. I can dance and rock with the best to Queen and Quo. But I'm not great when it comes to classical guitar, tuning and chords. So off I go to the music shop, with Roo and Sweet-Pea in tow to buy Honey's present. The guy in the shop was in the process of clucking and tutting over the untidy state of the counter, and proceeded to tell me the importance of control and tidiness. Being a messy, disorganised person myself, I found it impossible to look him in the eye, so I nodded vaguely and shifted uncomfortably.
Guitar guy then fetched a small, finely polished guitar which he handled lovingly and offered to tune it for us. I was beginning to warm to him as he then started on a diatribe against hoodies. I have a lot of sympathy for hoodies and have even considered becoming one myself. It seems quite attractive to raise a hood and hide from the world. Honey is a 7 year old hoody, and we often speculate that he wears a hood in bed. As he tuned the guitar, he asked Roo if he played. Roo was unable to answer and stared at him. Guitar guy was unpeturbed, as I explained that Roo had once played but couldn't anymore. He told Roo that he'd be able to correct Honey's hold and hear when he was out of tune. Quite naturally and without fuss, he said to Roo that these foundations would be a key part in his learning.
I wanted to hug him to acknowledge his unassuming kindness and generosity. I resisted. I had the feeling that demonstrative affection, might be right there with untidiness and hoodies.

Birthdays

2007-04-04T08:23:00.000Z

Honey is 8 on Monday. He has ambitious plans. These include a visit to a theme park, and multiple parties with different configurations of friends and family. He wants a guitar so that he can have lessons and be part of a famous rock band. He'd also like a mountain bike so that he can be the coolest, fastest boy on the block. I love his boundless enthusiasm. His imagination makes a huge, optimistic and guileless leap; transcending money, talent and luck.
The countdown to his birthday began at the weekend, when Honey worked out how many sleeps and days until the big day. I noticed that he's been careful to contain his enthusiasm, to periods when Roo hasn't been around. Sweet-Pea ever sharp, remarked on this.
'Why haven't you told dad that it's your birthday soon?'
Honey replied:
'Well, he'll go on about it, and on, and make a fuss.'
Sweet-Pea pondered this:
'Well, if you keep going on I'll tell him'
Things deteriorated at this point, involving further threats and fists. However, the irony was not lost, that whilst it's permissable for a 7 year old to 'go on and on', it's unacceptable, and intensely annoying when it's your dad.

The Great Pretender

2007-04-02T07:43:00.000Z

Oh yes Im the great pretender (ooh ooh)
Pretending Im doing well (ooh ooh)
My need is such I pretend too much
Im lonely but no one can tell

Oh yes Im the great pretender (ooh ooh)
Adrift in a world of my own (ooh ooh)
I play the game but to my real shame
Youve left me to dream all alone

Courtesy of Freddie Mercury, Queen

Having Balls

2007-03-29T07:24:00.000Z

It was Roo's review yesterday. Doctors, specialists and therapists all joined together to discuss how he was getting on and where he was heading. I had been told by a particularly patronising consultant, that I would find such a meeting intimidating. She told me that I would be surrounded by professionals......hmm, don't carers count as professionals then? As I have been the one co-ordinating his care, I decided that I should lead the meeting. There seemed little point in bemoaning my lot; I seem to do enough of that here, and it was an ideal opportunity to get some action in terms of care and activities for Roo.
Of course the down side of this, is that I came across as competent and in control. A woman with balls is coping of course. Umm?

Sofa Watching

2007-03-25T12:25:00.000Z

It's the details that form the fabric of a family. Small understandings that are shared, and seem strange to others looking in. Habits and traditions that weave themselves eventually into family lore and ritual. Sweet-Pea for example has a bed-time routine where blowy kisses arrive from people she loves. It can take forever, as she carefully stores the kisses under her pillow, to use during the night. It's when the kisses arrive from other people's long-dead pets that I begin to get suspicious.
And then there is the sofa; roomy, purple and large enough for all the family to squash onto. However, there is one end that we all love. We jostle and scheme for this corner, inventing reasons for it's occupant to fetch crisps or drinks so that we can steal their place. Even Poop the lab joins in, pushing with her nose until we're clinging to the edge. Roo also likes to sit there. He stands directly in front of it, pinning the sitter's knees up and blocking any view of the television. The children complain that it's not in the 'rules' and 'it's not fair'. He hasn't yet sat on the person who's already sitting there. But I'm waiting, and wondering if in 'mother' fashion, I can turn it into another family tale.

Being a Mum

2007-03-22T07:35:00.000Z

One of the things that I love in life, is being a mum. I feel I do it reasonably well. I enjoy my children's company. I've taken an old-fashioned pleasure, in being with them in those early years and when they come home from school. However, a couple of days ago, Arsey, told me that he felt depressed, and some days he found it hard to keep going. Of course, it's easy to put things down to HD and the ripples of change it effects in the family. It may well be teenage hormones and the pressures of exams. However, what bugs me is that everyone else has noticed but me. I can't help feeling, that all my energies have been bent on coping with Roo, and this has taken my attention away from the children.
Arsey, has been much happier since telling me, even cracking jokes. It's me, who keeps checking his shoe laces. He told me to stop patting him, that he's not a dog. I wish he was. Poop the lab is much simpler to love and understand. She thrives on food and exercise. Whilst Arsey, craves a happy environment, to grow into a healthy adult.

Coming Home

2007-03-18T20:36:00.000Z

This morning, I lay in bed feeling sick, fixed to the sheet, at the thought of Roo coming home. Now I know how lucky I am to have had a two week break including a trip to the US; after all, it's more than most carer's get. However, it's also given me a glimpse of another way of living. I have discovered new things about myself, and I don't want to forget them, or bury them. There's been uninterrupted time spent with the children. They've had their own thoughts on Roo's homecoming:

Arsey (16) 'Can we invent an illness that's worse than HD, so that he stays at Moos?' (ho, hum)

Sweet-Pea (4) It's hard for you to look after everybody, when dad's home. You stop looking after yourself when he's back. (B****y Hell that child is scarily perceptive)

Honey (7). He has spent the last two days subsumed within a large Guinness hat. Anything he says is muffled, but I think it included '.......cool......snot......belch.'

Really, what more can I add? Think I'll get one.

Talking to Roo

2007-03-17T08:21:00.000Z

Many years ago, I used to teach 4 year olds. One day, when I was shopping, I met Megan with her mummy. Megan, turned in amazement to her mum, and said:
'Look, it's Miss; I thought she lived in the home corner at school.'
Yesterday, when I was driving the children back from tennis, the phone rang. It was Roo, so I pulled over.
Roo: Are you alright?
Me: Yes, I'm fine, are you ok?
Roo: Yes, are you alright?
Me: umm, great
Roo: Are you alright?
Me: Of course, I'm f****ing alright, why are you phoning?
Roo: You weren't in.
Me: No, the kids have had tennis.
Roo: You haven't been in today.
Me: I have a life (umm).
Roo: Here's Moo
Moo: Ben's (another carer) gone off for a few days. He says he needs a break.
Me: Well, that's good.
Moo: He hasn't taken Lyn
Me: That wouldn't be a break then
Moo: Silence
Moo: How's the slow cooker?

Perspective

2007-03-15T07:41:00.000Z

I've had a wonderful week in the USA. I've eaten lobster in Boston, gone to the top of the Rockefeller Centre in New York and sat on the beach in Miami. I've loved every bit of America, and the big heartedness of Americans themselves. Their openness and hospitality has genuinely touched me. Right until the last day, I would proceed every greeting of 'how you doin?', with a potted biopic of who I was and how exciting it was to be in America. Sometimes, I've got scared looks as the unsuspecting person backs hurriedly away (pilot guy in elevator, I apologise, it was my first day and I was bouncing. I'm sure you didn't need to get out when you did.....hope the next elevator was quieter, or the stairs weren't too much). But mostly, my enthusiasm has been greeted with smiles and enquiries about the UK.
I didn't want to come home, but the trip has given me a bigger perspective on the world and life. I can see that HD doesn't have to be the whole picture, and that the kids and I have a place too. Life is short, and there's a lot to pack in.

Carefree

2007-03-08T11:52:00.000Z

Roo is staying with Moo for a couple of weeks and the children are having their own fun. So I am in the USA. Unbelievable! Everything here is so big. I'm posting this from Boston and then travelling down to New York, then flying to Miami.....sorry, I can't resist the name-dropping. The good thing about caring, is that you really appreciate it, when you're not doing it. Having a bath without feeling you're on a parking meter, reading a book without the interruptions. Today, I'm going to love every minute of being a tourist. I'm going to take photos, eat waffles and shop 'til I drop. For a week, I'm going to be me, instead of a family attachment. Happy days.

Running Over Roo

2007-03-04T09:47:00.000Z

One of the things that I respect about Roo, is the grace with which he has given up driving. This wasn't easy for him, and I was grateful that he had enough insight to stop, despite encouragement from family and doctors. Knowing how much he misses it, whenever we go somewhere I make a point of asking his help to park. He sort of jumps/falls out of our van and waves wildly at the back as I reverse. Roo is short and the van is quite high, so all I manage to see is his head and hands. But yesterday, he disappeared, with a dull thump, as I slammed on the brakes. I sat motionless, gripping the steering wheel, experiencing relief, guilt and sickness all mingled up. Then I thought of my blog. After all, I've talked about drowning Roo in boiling water and pushing him off the train: all of which wouldn't look good for me in court. But surely, I would be able to plead insanity? I've been up that pole along with Franj and Stanne, and I've taken five children and Roo ice-skating.....not the actions of a woman of sound mind. As my imagination raced, up pops Roo in the front windscreen:
'I'm OK'
Hmmmm, back to insanity.

We Are Family

2007-03-03T09:23:00.000Z

Over breakfast, one morning, Honey who is 7 asked me what made a family. He was keen to find a difference between friends and relations. We talked about grandmas, brothers and cousins. Then he mentioned Lucy and Co. We had stayed with them for a long period in the Summer when things were difficult at home. They had shuffled themselves around in an already crowded house and made room for 3 extras. We had just slipped into their way of living, even adopting grannies, and their home had become ours. Honey was certain that their love and generosity naturally made them into our family. He was unequivocal about it. Sweet-Pea talks about having three homes, and each one obviously provides her with comfort and security.
I found this whole conversation reassuring. I think that HD can frequently fracture relationships. My blood family is pretty bl**dy useless, and having had a particularly dysfuctional upbringing, where I found myself on the periphery of things, the thought that we can form our own family is a good one. I think it's comforting that the children are pragmatic about their own family gaps. When I look at our local HD group, I feel a sense of solidarity and belonging, that I've never really experienced before. On outings, we are a disparate bunch, yet in our muddle we laugh and encourage each other. Sometimes, I think that one of the reasons I stay with Roo, is because I want to stay with them. They are a sort of glue, holding us all together. HD is unexpectedly adding to my experiences of family.

Poorly

2007-02-27T04:12:00.001Z

I'm ill. I've had two different diagnoses; both ending in 'itis', and I can't spell either. However, they both mean a sore throat, paroxysms of coughing, aching, intermittent temperature, exhaustion and feeling sorry for myself. The prescription is rest and lots of green vegetables. Ha, I hear you snort, 'fat chance'. The adage, 'who cares for the carer?' springs to mind. After all, there is Sweet-Pea, Honey, Arsey the teenager and Roo, all expecting me to perform like a F1 car. In fairness, Arsey has been less arsey, and even took over cooking yesterday evening, when he saw that there was a real danger that I might end up in the bolognese, and thus spoil his supper. Sweet-Pea and Honey read stories to me last night, and spilt water in the bed, as they fought over who could get me a drink the quickest.
But Roo has been thrown into a panic. He genuinely can't cope with any changes or signs of weakness in me. It threatens his sense of stability, and he's developed a 'cold'. This involves, much sniffing and detailed reports on bogeys. It impresses Honey, who looks on with fascination, muttering 'cool'. Sweet-Pea, keeps patting Roo, and tells him 'we still love you' (scarily perceptive at four years old).
And me? Well I'm off to my imaginary bed. I just can't compete with imaginary bogeys.

In Neutral?

2007-02-25T09:20:00.000Z

Recently, I've noticed that it's becomingly increasingly difficult to engage Roo in conversation. He's always been a quiet observer, but in his moments of quiet, he no longer seems to be observing, just absent. This absence concerns me, it seems to mark a new stage in the illness. Where does he go in these moments of absence? Is he sad, lonely, reflecting on life, dwelling on the next obsession? Or has his brain simply gone into neutral, as a friend suggested? I try to motivate him, when he's like this. I point out something on the radio, or start chatting about the kids. But he always goes back to that inner place. I hope there's some sort of peace there, because out here, it's disquieting and rather unnerving. Another loss, another adjustment.

Mr Boiler Man

2007-02-23T15:30:00.000Z

Finally, the boiler man arrived today. He was just like Father Christmas, a jovial giant dispensing warmth and good will (metaphorical, of course; the boiler may still take some weeks to get fixed). He quickly assessed our situation, and engaged Roo in giving him a tour of the house. He proceeded to scratch his head and made earnest mutterings, whilst staring hard at our cat, Moley.
His final stop, was the boiler itself, which is in the utility room. This small space is also home to our washing which hangs in lines across the room. Friday is wash day, so there were trousers, pyjamas and a large variety of underwear; including a particularly rich assortment of knickers. He is followed, by Roo, like a terrier at his heels, who misses his footing and in doing so grabs the laundry line. The whole paraphernalia is pulled down, and cascades around Father Christmas, whose gargantuan form is now host to t-shirts, boxers, pants and worst of all my ancient bra (you know the one, comfortable but skanky), which had draped itself over his head, like a pair of ear muffs.
To his credit, Mr Boiler Man, was unfazed by becoming a washing line. He gave a deep throated chuckle and proceeded to pick off the washing and mend the line. I'm looking forward, to seeing what he does, with the boiler.

Other People's Piglets

2007-02-20T09:00:00.000Z

Recently, when I was moaning about being followed by Roo, a friend pointed out that I could show more empathy to Roo's predicament. It brought me up short, because he was right. In The Selfish Pig's Guide to Caring Hugh Marriott, refers to the people we care for as piglets:
Person I give Love and Endless Therapy to. Now, I don't refer to Roo as my piglet. Not only would it be stealing someone else's idea, but at the moment I'm uncertain of the love bit and as for therapy, well I may give endless amounts of time, but I question how much of this time is therapeutic for Roo. I know I'm being pedantic; always guilty of over-analysing. Selfish pig, yes, but piglet, not so sure.
However I don't find it difficult to be loving, attentive and therapeutic with other people's piglets. I am very happy to feed Janet, hold Sue's hand when she gets anxious and take time listening to Jack, despite the fact that he's difficult to understand. I can empathise with other people's piglets, but not with my own. I grew up with a disabled mum, so I'm not disturbed by difference and disability. But I am uncomfortable with the changes in Roo. It frustrates me that I can't tap into that sympathy and concern, with my husband. I suppose it's having to disengage the emotions, which is tricky, when it's your partner. Perhaps, it's comparable to looking after other people's children: always easier than your own, because you can hand them back.
I'm sure that I can't be alone in feeling like this. Equally, Roo must be bored with the wrinkle across my forehead and the set of my jaw. So perhaps the solution is to swap piglets and selfish pigs. What do you reckon? It could put a whole new perspective on the crappy HD deal.....swingers parties for pigs and piglets. Any takers?

Shrinkage and Stirrings

2007-02-17T08:29:00.000Z

I've just returned from two days away, visiting parents. With the children we dined out, went exploring and raced along the shingle against a howling wind. It was both exhilarating and liberating. It was as if I had been holding everything tight together with a bungee, and suddenly I could let go. My world became bigger. I found myself pondering new ideas and looking outside my own interests.
When someone has a degenerative condition, like HD, their world inevitably becomes smaller. They lose skills and functions. Familiar routines become pivotal, communication limited and new ventures are harder. As carers, it's hard, not to mirror this. My vistas have narrowed and I've become largely focused upon the family. All my energies pour into maintaining the every day stuff. I'm not blaming Roo, this isn't just about HD. I can see that I've been conditioned to think small, and it suits my rather 'fragile' ego to stay within the box.
But I feel that I've glimpsed something bigger than this and I want to look further. There are countries to taste and horizons to chase. I feel the unfamiliar stirrings for adventure, and I'm not sure if I can or want to ignore them. I'm wondering where my itchy feet will lead me.

.....And Eye Candy

2007-02-14T08:17:00.000Z

Ok, so the roof leaks, the boiler's bust, and I'm officially depressed, but once a week, I have counselling with a Patrick Swayze lookalike. Yes, it can be a little disconcerting, discussing incontinence and ballcocks with a male model, but I manage. I look on it as therapy. Patrick sits there with his rippling muscles, dimples, and nut brown eyes, and I take it all in.
Perhaps I should point out, that I don't actually go for regular guys like him.......although my predilection for irregularity could explain why I'm in this situation: husband with HD, lover who's doing a runner. Anyway, I digress; Patrick is not only handsome, but wise. His observations include:
'If you have one foot in the future and one in the past, you crap on the present.'
I like his common sense approach. There's not too much navel gazing and we laugh a lot. It's amazing how problems just slip away, when faced with so much male beauty. Patrick says there's some 'movement'. Not too much, I hope. I think I may be in therapy some time.

Popping Pills

2007-02-11T09:55:00.000Z

My name is Dee; I'm a carer and I'm on anti-depressants. Yes, it does feel very much like a confession. There are very few subjects that I find taboo, yet a few months ago, the thought of taking anti-depressants, brought me out in a slight sweat and I would shift uncomfortably in my chair.
It was a close family member that persuaded me that I needed to take something. He could see that I was really struggling and sinking rapidly. He did this gently, but with candour, and helped me see the situation from a different perspective.
So why was I so reluctant to take medication? It felt like an admission of failure. I believed that I should be strong enough to cope on my own. However, I was continually crying, over-reacting and could not face getting up every day. It was getting to a point where I wanted to end my own life, so I clearly needed some help. Ben told me to look on it as another resource. He compared it to fuel, that would just give me the push needed to get me through each day.
There is a lot of stigma around anti-depressants. It is associated with weakness. For me, it was about pride and high expectations. I have discovered a huge amount about myself in caring for Roo. Some of it's uncomfortable reading. But I know that I can't do it on my own, I need a battery of support. And that includes those small white pills.

There's a Hole in my Ceiling

2007-02-10T09:46:00.001Z

Me: I'm sure that was water on my head

Roo: Yes, it's raining in here

Me: But we're indoors

Roo: It's still raining

Me: So the roof's leaking again?

Roo: No, it's rain

Me: I'll fetch a bucket

Roo: That's why I've got my mac on

Me: I'll get an umbrella. It's raining in here.

Home Alone

2007-02-08T09:30:00.000Z

One of Honey's favourite films is 'Home Alone'. He sits there enthralled as Mc Cauley Caulkin makes elaborate traps for the bad guys trying to burgle his house. He gets a vicarious thrill from the situation of a kid being left at home alone, secure in the understanding that it wouldn't happen to him. That is, until yesterday.
I needed to get some bread and fill up with fuel. Honey, who is 7, but never rushes, was still dawdling through dressing whilst humming to himself. I asked Roo to get him some toast and settle him down with his books. I would only be gone 30 minutes, and I was sure they'd be fine. So Sweet-Pea and I set off for the fuel station, chatting and singing, when suddenly I am struck with this churning in my stomach. I head straight for home. The house is unusually quiet. I shout for Honey and bound up the stairs. There he is, with a bowl of water and some string, startled, at being pressed to his mum's bony bosom.
'It's cool, mum. Dad's out and I'm making a trap for bad guys.'

Funerals and Haemorrhoids

2007-02-06T06:40:00.000Z

I went to a funeral last week, and the whole experience was one of the week's highlights. The circumstances surrounding it, were however, very sad. The son of one of the members in our HD group had killed himself because he had the gene. Four of us went: Don, Harry, Eleanor and myself. Eleanor is in her eighties, and lost her grand-daughter recently, in similar circumstances. I was concerned that she would find the whole thing too much, and thought it a great act of generosity that she had chosen to go.
It was a relief to emerge into bright sunlight, and to stretch after sitting on cold, hard wooden chairs. I turned to Eleanor and said:
'I hope we don't get piles'
Unbeknown to me, Eleanor is deaf in one ear, and I had to repeat myself, several times, each time getting louder, until I was bellowing 'piles'. Several mourners were staring, and then Eleanor said:
'I know a ditty about piles'.
Now, I can't repeat the ditty here; I might get struck off the blog. But we thought it so funny that we kept asking her to say it again.
We were starting to feel more cheerful and decided to go to the pub rather than the crematorium. Fortified with beer, Don revealed that he had a stiff neck, so I offered him a rub. It was a small bar, filled with quiet regulars who watched agape, as I massaged Don's neck. Now prudery, really irritates me, so I asked them all in a loud voice whether anyone else would like a rub, £10 a go. Silence fell, broken by Eleanor:
'Do you do women?'
I was beginning to love Eleanor, for her wit and feistiness. She is a true phoenix, because amongst the pain and loss of HD, she emerges bright and sparky, with the capacity to make others laugh. We went back to her house for soup and tea; four cheery comrades.

Up the Pole

2007-02-04T22:22:00.000Z

I've finally cracked. I thought it would be Roo, but no it's me. I've lived my own 'normal', dysfunctional existence for a week. But an afternoon of being followed, repeating the same things and breaking my 7 year old's beloved CD player, has finally had it's toll. I left the room, crying this evening, and shut myself in my bedroom, vowing never to come out again (toddler, teenager, carer, it's all the same). It was Sweet-Pea's singing and the need to pee that finally persuaded me to emerge. But I don't feel sane, I'm likely to start blubbing incoherently. I told Roo in a high pitched scream that he was driving me up the pole. He asked which one?
It's quite nice up here......good view, bit uncomfortable, but better than being at the bottom. Any of you want to join me?

Denial

2007-02-02T07:21:00.000Z

I know that denial is an organic part of Huntington's Disease, as well as an emotional choice, to avoid a shit deal. However, I wonder whether it's also intrinsic to being a carer, at least this carer. Last year when it was clear that Roo was exhibiting bizarre and aggressive behaviour, I simply ignored it for as long as possible. I'm not sure of the exact reasoning; partly I think because acknowledging the truth was just too awful, and partly through a selfish desire to keep my world intact. If you pretend it's not happening, then it's not.....I always did have a very active imagination.
So you would think that I had learnt from this? Apparently not. I was shocked when Roo's mum rang last night to tell me that he had wet himself twice. Whilst she rattled on about clinics and incontinence pads I stood there reeling. Why? He's had a couple of accidents before, so I shouldn't be surprised. However, it seems to mark another stage, another development, and I'm still playing catch-up with the other bits. Just as I thought I'd left those baby years behind of crap and nappies, I'm going to be re-visiting it with my husband. I just don't want to think about it. Do we start taking spare clothing with us when we go out? How do I explain it to small children? Do you warn friends? How do you know when he's ready for pads? And if he's ready, will I be ready? Or will I have my head buried beneath that bl**dy great 'D' word?

Diarrhoea and Angst

2007-02-01T07:52:00.000Z

It's been rather a strange week without Roo. The boiler is still broken, but it hasn't seemed such a big problem with Roo not here. I have however decided that in some strange way I must be drawn to suffering in relationships......like some sort of battered wife syndrome, because as soon as Roo had gone, I manufactured a big row with my lover. It's all sorted now, and making up was rather nice, but why put myself through the angst? Perhaps angst, has become a drug that I am addicted to. In the midst of the angst, the children have each had diarrhoea. In between the angst, the diarrhoea, and the constant bum wiping, the computer has thrown huge temper tantrums. But I have had thinking space, which becomes a wonderful luxury, when you are caring for someone. I've been thinking about Roo, before he developed recognisable symptoms of Huntington's. I miss the person he was and the role he played in the family. I don't think we had a great marriage, and there were certainly moments when I wanted to leave, and now I regret staying. But there was a sense of partnership and equality. I seem to have forgotten that, amongst the frustration of caring for him.
Perhaps it is this, which has enabled me to be so patient with him on the telephone. It hasn't bothered me that we go round in loops or that he keeps telling me how much better Moo's cooking is, and the gymnastics she performs with the slow cooker. Or maybe it's the fact, that I can put the phone down, and return to angst and diarrhoea in peace.

Telephone Conversation with Roo's Mum

2007-01-29T08:04:00.000Z

Me: So you're still coming tomorrow?

Moo: Yes, I've sorted it all out with Roo

Me: Aahh, what exactly?

Moo: I'm taking him back for a week

Me: A week? (huge, silent whoops).

Moo: Didn't he tell you?

Me: Well no, he forgets things

Moo: Why's that then?

Me: He's got Huntington's Disease (lots of clenching.....teeth, fists,
shoulders, buttocks)

Moo: I know, but I did tell him lots of times

Me: Yes, but he forgets lots of times. Maybe we could sort it
out together next time. (it would save having this bl**dy stupid
conversation)

Moo: I did tell him

Me: (two of my fingers start gesturing impolitely)
The Occupational Therapist came this week. She was really good.

Moo: Yes, but Roo told me he didn't like her. She wants to put a hand- rail up the stairs.

Me: He's fallen down a few times.

Moo: Well that doesn't mean anything, you fell down last week.

Me: (make vomit face, interspersed with finger gestures)
Let's get the rail for me then

Moo: How's the slow cooker?

Seasonal Carer

2007-01-28T06:48:00.000Z

I hit my low and now I'm surfacing again. Lots of things have helped get me back on track, not least the kind comments from Franj, Stanne and Barb. I have some wonderful, loving friends who are there for me, in emotional and practical ways. I'm also discovering that the virtual world of the internet, throws up support from people I've never actually met. It's both touching and heartening, that the web is also a net that holds us together.

I'm also feeling more cheerful, because I've discovered a new relationship with the boiler. Ok, so it's not quite so intimate as the one with the ballcock, but I'm seeing it in a different perspective. You see, a broken boiler has it's advantages. Roo doesn't like the cold, so he's going to stay with his mum for a week. Now, I'm questioning whether the boiler should be mended? Perhaps I could become a seasonal carer. The sort who only looks after Roo, in extremely warm weather, like a heatwave. I think I could be a jolly good carer, if it was for just a couple of weeks each year. I could be loving, patient, attentive, even caring: all the qualities I often lack. So I'm seeing frost-bite, freezing water and broken heating in a whole new welcoming light.

Could Do Better

2007-01-25T09:30:00.000Z

It's a thankless task being a carer. And no I don't find that the job reaps its own rewards....ballcocks to that. I seem to spend a lot of time chasing up professionals, and loads of mental and emotional energy on trying to work a way through the crap of finances. Suddenly, it seems I've taken charge of the family, and it's like a crooked boat, it keeps tilting precariously towards the water.
Yesterday, after months of ringing and nagging, we had a visit from the Occupational Therapist, to look at ways of adapting the home for Roo. She was lovely; very gentle and positive. Roo however resisited her suggestions and when she had gone, told me how useless I was. He proceeded to poke all those weak, sensitive areas of my personality that bruise easily.
Ok, so I'm having a bad patch and indulging in a wallow, or a bloggow. It feels that I'm doing everything badly at the moment: caring, mothering, household tasks and friendships. There should be a stamp on my forehead that reads 'Could do better'.

Symbols

2007-01-24T07:00:00.000Z

When I was trying to shepherd a wobbly, disorientated Roo on to an overcrowded train, I realised that it would be much easier if he was in a wheelchair or if he carried a stick. We love labels in our society: houses, gadgets, cars all add up to how others view us. Similarly a wheelchair wields great power: people fall over themselves in exaggerated obsequiousness to open doors and make room. It can be a potent emblem, not just for the user, but for onlookers of their 'non-discriminatory' kindness. Someone who looks slightly drunk and odd, usually attracts furtive glares but certainly not sympathy.
So what about us carers? What could our symbols be? Well, I wouldn't mind a stick; useful for prodding Roo and those many ignorant, misinformed professionals. Or perhaps some shackles would be more appropriate? Maybe a halo, for those rare saintly days? I don't really need any of those....my expression says it all. It's a harried, wild-eyed look, that's continually searching for the exit.

Well-adjusted?

2007-01-22T07:57:00.000Z

Yesterday, Roo told Sweet-Pea that he was scared of dying. What a thing to tell a four year old. Later that evening, Theresa told me that she thought my children were well-adjusted. I couldn't help feeling, that it suited her to think that way.It's a platitude, that I also use to avoid uncomfortable truths. Children have to adapt to all sorts of situations in life; because they are powerless, they have no choice. It doesn't make it right or healthy. How do you adjust to the fact that your dad has a degenerative, neurological disease which you may inherit? How do you adjust to tension, unhappiness and emotional instability? Is it character building or self damaging?

Too Many Balls

2007-01-20T09:15:00.000Z

No not ballcocks....I've mastered those....bring 'em on. I'm talking about balls, the shiny ones that you juggle. Have you ever noticed that when you drop one, the rest rapidly follow? It started on Wednesday night when I fell up the stairs (ok, so most people fall down the stairs, but hey I'm contrary, I do things differently). By Thursday morning my foot was painful and swollen; there was a gale, a bucket collecting rain water in the living room, and Roo had an appointment to go to the National Hospital of Neurology in London. I decided to postpone the appointment, at which Roo threw a 'wobbly'. Now in some circumstances, I can be clear and decisive, but naturally I am not autocratic, and with children wailing that they wanted to spend the day with friends and Roo bellowing that he wanted to go to London, I weakened, prevaricated and gave in.
The day was uneventful, although the throbbing in my foot persisted. Trying to lean on someone who is unstable and trips on kerbs, whilst being buffeted by a gale, meant that we weaved across London like a couple of drunks. Finally, with relief, we returned to Waterloo, only to find that there were no trains running due to bad weather. Roo blanched and became wobbly; he relies on routines and consisitency, and by this time the concourse was packed with angry, panicking commuters; all of whom had hugely important journeys to make. Roo was pushed and shoved by people who were oblivious to his disability. If someone's not actually physically in a wheelchair then people assume that they are able. I'm quite slight myself so any attempts to shield him, were laughable, although some steely stares did the trick.
Finally, a train arrived, and after some pushing , shoving and exclaiming in a loud voice:
'This person's disabled'
I managed to get Roo a seat. He didn't want to sit down, instead he preferred to stand with me and fall over at regular intervals. I resisted the urge to push him off the train, and instead did lots of muttering.
At Woking, the train stopped, and we were informed that there were more trees on the line and everyone had to alight. Now 'alight' isn't a word that applies to tired, stressed people with HD who are being looked after by a stressy carer with a throbbing foot. Somehow we staggered off, to a heaving platform at Woking. Now for those of you who have no idea where Woking is, neither have I. It's one of those places you go through, but never visit. You say 'Ah, Woking' as you pass, because it marks a point in the journey. It's never the journey itself. As we stood there trying to work out what bearing it had on our destination, my mobile phone rang.
'Hi, it's Joan. Now don't panic, but I'm having to take Sweet-Pea to hospital. She's had an accident.'
Now Sweet-Pea is our youngest, and the thought of her going to hospital with no way of reaching her, made me feel sick to my very bones. We were stranded in Woking of all places, already in a state of panic, now bordering on hysteria. At least I wanted to indulge in hysteria, but of course that's just a luxury when you care for someone. So in the absence of Richard Gere, I phoned Harry. I didn't need to ask him, he just said he'd come and get us. Some friends are treasures; they give in a way, that is both comforting and comfortable.
So many hours later I arrived at the hospital, to find Sweet-Pea smiling and enthroned on cushions, surrounded by more loving friends and oblivious to my absence. We had arms and feet x-rayed together, which turned into an adventure (my foot is sprained, her wrist is broken....what a pair).
When I got home, very late, limping, with two tired children, one with a poorly arm, Roo was waiting.
'It's been a nice day hasn't it?'
Good thing, one of us lives in La La Land.

La La Land

2007-01-17T09:25:00.000Z

I live in La La Land, a place of delusion and soft smiles, where hideous lack of forethought and planning has no bearing on outcomes. In La La Land I take five small children and Roo ice skating. The children sing happily on the long journey and Roo is quite content with his own sandwiches; he doesn't feel the need to eat the childrens. At the La La ice rink, the children all help each other put on ice skates, they don't bicker and demand that I put on ten skates at once. On La La ice, Roo doesn't insist on tottering dangerously whilst 'helping' the youngest child. He sits at the side shouting gentle words of encouragement. At Planet La La, the child who is not mine but is my responsibility, does not bang her head on the ice whilst I am getting Roo a coffee, in the hopes that he will leave the slippery surface. In La La Land, the child does not cry hysterically whilst Roo matches her pitch in exclaiming that 'people are trying to steal my coffee.'The La La mother does not expose her children to inappropriate language, and she certainly doesn't accuse daddy of eating the f***ing lunch.

Bath Time

2007-01-16T07:21:00.000Z

Feeling empowered by my success with ballcocks, I decided to adopt a more positive approach towards Roo. Over the past year, he has gradually stopped doing things with the children, and I know that they really miss his input. With this in mind I suggested that we did bath-time together. A mistake, showing no forethought on my part, because bath-time has to be one of the most stressful times of the day. Add to this, someone who is unsteady on their feet and needs a lot of direction; plus a tired, over-wrought mother lacking patience, then you get the picture.
I took children and Roo upstairs. I told him to run the bath, whilst I got the children ready. Ten minutes of pinning down squirming, over-excited children and I finally coax them to the bathroom. Waiting for us is a bath full of cold water, because it had slipped my mind that the boiler's broken (and no, I don't even attempt to mend boilers, because I like the word 'ballcock' and boiler just doesn't have the same ring), just as Roo had forgotten that children require warm water for baths. Taking a deep breath (no swearing at this point), I proceeded to heat kettles and saucepans. With care, I negotiated lego bricks and whooping children until I reached the bathroom, where Roo was standing oblivious to the peril of scalding. By the third journey I was so p***ed off, that I pushed him on to the toilet seat, momentarily forgetting that it was broken. He totttered and swayed precariously towards the bath. Yes, I envisaged drowning, freedom, guilt, before grabbing him (a burnt Roo would be much harder to care for), yelling:
'Now can we f***ing mend that bl**dy wonky toilet seat?'
Roo replied:
'I like it like that.'

Crap

2007-01-14T12:43:00.000Z

Stanne wrote in the comments that the post on 'ballcocks' sounded a little like a homily. I suppose it does, reading it back. The thing is, I feel crap about most aspects of my life at the moment; and that small achievement of stemming a flood made me feel less crap. Also, it's easier to focus on extraneous bits, like plumbing than caring. I can't even bear to be in the same room as Roo at the moment; so the accident with the toilet was like staring over a precipice, it evoked such despair and anger in me. Sorry readers, I promised honesty so you got ballcocks, because that's where I'm at with it all.

Ballcocks

2007-01-13T11:27:00.000Z

I love that word 'ballcock'. It manages to sound terribly rude whilst describing something very functional. Yesterday, I found myself screaming it at Roo, while having one finger up a pipe and trying to fix a flooding cistern that he had broken. When I started this post, I was going to go into detail about his unconcern, my meltdown etc, but I find myself wanting to tell you about toilets and the usefulness of ballcocks.

You see, I'm not really a practical girl. However, I am determined, and after some reflection I managed to work out how to stop the flood. Now that didn't give me immediate gratification, I was too busy mopping up water, swearing and plotting murder. But, when some hours later, the toilet was still not leaking, I felt a surge of pleasure at my plumbing skills. I began to wonder, if I could permanently mend it and began investigating the source of the problem (it's not in fact the ballcock but a perished valve....but I still prefer to say 'ballcock'). It's made me question, whether I am quite so helpless and useless. Last year a teacher, this year blogger and plumber.

Survival Kit for Carers

2007-01-12T07:16:00.000Z

Skip.....with or without four year old.

Pop pills....I mean anti-depressants. What were you thinking?

Read lots and lots.

Take a lover.

After you've taken your lover; get him to serve you poached eggs.....very comforting.

Develop the art of screaming expletives out of the window. Stare into the middle distance so that neighbours don't take it personally.

Take up knitting. Not only is it soothing, but those pointy sticks are great weapons.

Dance at every opportunity.

Develop a black, sick sense of humour.

Start a blog.....~~spread~~, I mean share your misery.

Any other suggestions?

Hooker or Carer?

2007-01-09T07:28:00.000Z

There's a scene in 'Pretty Woman', where Julia Roberts, who plays the hooker is being taken on a posh date by Richard Gere. He gives her lots of money to spend on classy clothes, only to find that all the decent shops on the high street, sneer and refuse to serve her. She leaves, feeling humiliated and demoralised. I felt rather like that yesterday, as I trailed Roo around the banks. We wanted to open a basic bank account, in order to pay his disability money into it....a sizeable sum which is required to pay the mortgage arrears. However, we were turned away by all the major banks. One told us that they only dealt with customers who had salaries coming in every month. I felt angry for Roo. While once he was able to work, he now relies on benefits and for this he was being shunned. I also felt ground down by the whole situation. I'm usually gobby and feisty, but yesterday, I simply wanted to run off to the duvet.

Of course, we're not in a film; I'm not a hooker (although at the moment, it seems more appealing than being a carer), and Richard Gere isn't going to climb up into my bedroom and rescue me. I wish.

Running out of Steam

2007-01-08T06:36:00.000Z

If I had a 9 to 5 job, I think I'd phone in sick today, but that doesn't work when you're a carer. In fact, the idea of telling them all that I'm just not going to do anything and I'm going back to bed, is comical. Kids and Roo would look at me oddly and expectantly.

It's my youngest child's first day at school. I have to feign enthusiasm for her sake as it's an exciting adventure. However, I feel emotional and depleted. After this, I have to assume some level of competence as I attend an appointment at the bank with Roo. Whilst pretending to be clear-headed, I have to be patient, as I steer him round some paper-work. In the afternoon (between these appointments I have to collect youngest from school, enquire with interest about her morning, and get Roo required number of calories for lunch) I get to look at our dire financial situation with a debt advisor. Always a salutory experience and one where I usually end up crying.

Somehow I have to scrape myself together, for the next appointment, because I've been called in to see my son's maths teacher. Now Sam is a great kid in lots of ways, just far too laid back/lazy. The maths teacher is a great teacher in many ways, just far too 'stressy'. Somehow I have to negotiate between the two of them, and enable both to see each other strengths. From previous experiences, the 16 year old is much better at this than the teacher. And I must try to keep my temper, as he tells Sam yet again, that 'home life is separate.'

However, my day gets better, as I rush home to persuade Roo, that he should attend his appointment with the community psychiatrist. She is a lovely lady, yet Roo hates her. The last time he saw her, he called her 'a patronising cow'. She said she's been called worse things and that it gave her some insight into my difficulties. But still, I always end up feeling responsible, rather like a parent for a rude child.

So, I'm feeling sorry for myself, overwhelmed and rather lonely. But I'm competing with the boiler, which is also having a crisis...no hot water or heating. What I need is some motivation on prescription, and what I want is a day beneath the duvet.

Picking your Battles

2007-01-07T08:54:00.000Z

Sometimes in living with Roo, I feel that I'm very gingerly tiptoeing through a battlefield, watching out for land mines. Conflict seems an inevitable part of HD, although I've decided that in living this rather bizarre existence, some battles are worth fighting and others just simply aren't.

Battles worth fighting

Roo simply cannot be allowed to take my 4 year old on his bike. I don't care what his mum and social worker say about 'empowering', it's not safe.

I have to stop him spending money as if we were rich. We aren't, and somehow I have to take control of the finances, without taking away his dignity....tricky one.

On the odd occasions when I take my 16 year old to school, Roo comes out to say goodbye in his underpants (and sometimes without them). This provokes excrutiating embarrassment from the 16 year old and a desperate attempt to start the engine before he notices. However it's a diesel engine and it takes a while to warm up. Sometimes we've managed to get down the drive and half-way down the street, but then Roo runs after the car, with or without his pants on. Oh my, what an odd life we live.

Reading a book, for at least ten minutes without interruption, once in the day.

Battles not worth fighting

Following me around the kitchen, and even standing on my heels when I'm cooking.....borderline; it depends what sort of day we're having and how many other conflicts there have been.

Playing Slade 'I wish it could be Christmas every day' (because I bl**dy don't) repeatedly, and loudly. December, I could almost live with, January I can't. However, rather than picking a fight, I shall simply lose it, bin it or destroy it, with great cunning and pleasure.

I can't stop Roo taking irrational dislikes to people, including some old friends. I'm certainly not responsible for how they react. I can only give them lots of information on HD and then the choice is there's, whether to be big or small- minded. Still, it makes me sad.

Refusal to have a new toilet seat, because it's wonky, and he likes it like that. OK, I can live with that; it's just difficult to remember in the middle of the night or when I return from the pub.

I can't stop speical things getting broken, I just have to learn to attach less significance to them, after all they are only things. I do however miss my book of 'Haiku' which he binned in a rage.

Slow cooker.

Inadequacies

2007-01-05T09:38:00.000Z

I am useless at cooking, routines and organisation. Now this is serious, it's bad news for Roo. He requires at least 6,000 calories a day, he thrives on regular meal-times which are structured with smiling serenity. He does get the required number of calories....Christmas cake and chocolate's great for that. However, mealtimes are chaotic, and often involve a frantic panic and scrabbling around in the freezer, fridge and chip shop. But it's worse than that. Not only do I know and you know that I've failed at the basics, but mother-in-law knows. You see Moo is devoted to her children, she is single-minded in her determination to nurture and protect them. She will not let anything get in the way of this, particularly my defects as a carer. So she buys us a slow cooker.

It sits on the work suface, resembling a beached whale. I'm sure that it has an accusatory expression, because every time I glance towards it I am reminded of my inadequacies. The fact that it requires planning does not seem to evoke that quality in me. I can put nutritious ingredients in, but they still emerge anaemic and watery. Rather gleefully I discovered that another family member had been given a slow cooker. So I'm in good company. I wonder will his relationship with it be an easier one?

So it takes more than a gadget to transform me into a competent carer. No surprise there I suppose. Any transformation is going to be a long drawn out one, and if it is to happen, has to be in my way and on my terms. Tomorrow, the slow cooker is going in a cupboard. Bring on the cake.

The Reluctant Sentimentalist

2007-01-04T11:32:00.000Z

A while back I had dinner with Harry. Now an evening with Harry is usually entertaining. He can tell a good story, he makes me laugh, and he is real. He's honest about how difficult it is being a carer and isn't afraid to call crap crap. Now Harry was describing a wonderful family gathering, when he suddenly said:
'You know something, I'm not sure it would have been like this, if it hadn't been for Huntington's.'
I found this comment disconcerting and to my shame I think I probably changed the subject. Whilst I think it's important to make the best of bad situations, that's not the same as seeing a golden aura around things that are plainly difficult, bordering on the impossible. Harry's comment made me feel uncomfortable, I was in a dark place, struggling daily and the last thing I needed was a dear friend evangelising about the positives. And yet.....

And yet, there have been times recently when I've returned to his comment and felt something similar. Over Christmas, we had very little money, yet friends and family looked after us in ways that touched me and certainly enriched us as a family. A good friend gave us money for the children's Christmas presents, yet he did it with a gentleness that made it possible to accept without embarrassment. Another, collected a box of Christmas treats which we had great fun unpacking, and this prompted us to share them with another family. There were unexpected invites for Christmas and New Year, and a period that we were dreading became one of the best.

I apologise....sincerely (!) for sounding smug or sentimental or anything else that makes you feel nauseated; however, I do think we've learnt incredible things about giving and receiving. Amongst the dross, there is growth.....sometimes.

Absence.......

2006-12-31T08:07:00.000Z

makes the heart grow fonder. Hmm, not sure about that. When you're newly in love, the spaces around someone can define them, so that absence becomes a wrapping that evokes longing and anticipation.

Well, Roo's away and the thought of his return fills me with anxiety and apprehension. I've managed to read books and play monopoly with the kids.....not that I'm desperate to play monopoly. But I have had the mental capacity to endure the tantrums and the shouting 'it's not fair'. And most of the time I am desperate to read books; it's my way of relaxing. Roo doesn't exactly stop me, but he's fairly demanding and by the end of the day I'm so exhausted that I often fall into bed; so books just sit there taunting me.

The interesting thing about this rest from Roo, is that other concerns have filled the space. I've spent some of it in casualty with a 15 month old, a lot of it worrying about my 19 year old's drink problem and a considerable part of it trying to set boundaries for my 7 year old, who has chosen this week to behave appallingly. It's made me aware that HD can be so time-consuming that I become oblivious to other problems. I don't have the time to go to casualty, or to worry about other things. Perhaps Jake feels that he can't act badly when daddy is around so now's a good time.

But in writing this, I realise that it's not good enough to blame everything on HD, although let's face it, it does have a lot to answer for. If I continue to focus on Roo and his needs then not only is his world diminishing with the progression of HD, but mine and possibly that of the children will diminish too. I have to either dig deep and find some mental space from Roo, or consider a permanent absence. I also have to examine the rather uncomfortable thought that I might be hiding behind HD. It's much easier to focus on one monster than many. Any therapists out there?!

Kids and HD

2006-12-29T10:22:00.000Z

A biggy I know, but one that can't be avoided if you are a carer of someone with HD and you have kids of whatever age. Yesterday stanne discussed staying for the sake of the children, but questioning that decision now that they are teenagers. In the family's hierarchy of needs, my two littlies and their teenage brother are right up there at the top; before the needs of their dad. At least, that's what I tell myself. However, it was recently pointed out to me by a professional that in staying with my partner, who has been agressive, abusive and is very demanding, that I have in fact delegated their needs to second place. This brought me up short and rather stunned me. I like to think of myself as a good mother; it's one of the few things in life that I believe I do really well. Would it be better for them if we left?

It's an indisputable fact that our children love their dad and he loves them. They like the familiarity of having him around and derive a comfort from his presence. However, they are also confused by his changes in mood, and I have noticed that when he is tired or irritable they are 'careful' around him. They are on their best behaviour, play quietly and often retreat to their bedrooms. Whilst it's rather a luxury to have such 'good' children I'm well aware that such behaviour isn't natural and puts a constraint on them. At some point this constraint will have to be broken and I worry that it will result in depressed, dysfuctional adolescents.

My 16 year old is neither depressed nor dysfuctional.....at the moment! He has had to grow up quickly however, and has taken on more responsibilities in helping to look after his siblings and at times his step-dad. This isn't necessarily a bad thing, and he brings to the situation a dry humour that helps us all to keep going. However, in the past year, he has gone from being an A* student to B's and C's. His tutors say that he is often pre-occupied, and once he left school early to check on the situation at home. Yep, he's caring and not unlike my two nephews who have grown up in an HD household. They are two of the kindest, personable and mellow young people that I have ever come across. They too have had to grow up quickly, but they have done so with great maturity and wisdom.

I guess there are never going to be easy answers. There's always going to be that conflict between nature and nurture. I was interested in stanne's comment about being reluctant to draw the teens into the debate of whether to stay or leave. With my 16 year old, rightly or wrongly we have discussed it. I want him to feel that his feelings and opinions count. However, its a fine line between respect and giving him responsibility and then guilt for any major decisions. That's my job.

Why stay?

2006-12-27T09:36:00.000Z

You've probably figured out that this isn't a role I've chosen, so why stay? After all no-one has forced me to stay; although I must admit that at times it has felt like that. The emotional pressure from social services and in-laws has been immense, but that's probably another post! I know lots of people who stay the course with a reasonable semblance of equanimity, so I've been asking them their reasons.

Gary: He's been caring for his wife with HD for 18 years, He says he can never imagine leaving her. Bl**dy hell, that certainly makes me feel inadequate, I imagine leaving all the time.

Pete: Caring for his wife for 10 years. He stays out of compassion and duty. That's more like it; whilst I'm not particularly dutiful, I have a fair amount of compassion.

Sarah: Newish to caring for Dave. She's struggling too......we sort of laugh and cry together. Sarah stays because she likes to see things through. I know what she means, I like to do things properly and can't bear to think I've failed.

Harry: He cared for his wife for 20 years. He stayed simply because he couldn't think of any other option. Brilliant; I could hug him for his honesty.

I'm sure that the reasons we become and stay carers are all unique to us: rather like fingerprints. Mine are complex, and I'm only beginning to unpick them. Some are selfish; I'm a perfectionist and I want to feel that I can crack this 'caring' thing. Practically, I know that if Roo moved out, I'd get phone calls in the night and visits all day. Financially, at the present, it makes more sense to stay. I also have children who are at risk of HD and I worry that if they see me not hacking it; on some deeper level they will feel rejected too. I feel strongly protective of Roo, another human being, who is more vulnerable than me. I don't like to imagine him being unhappy and lonely. Perhaps selfishly, I'm not sure if I would cope with the guilt. Maybe, at the moment it's just easier to stay than leave. I say, at the moment, because it might change, I don't think I can promise to stay the course. I can only commit to staying today.