Doctors

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

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

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!

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

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

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

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.