In New York

In New York

Tuesday, 24 November 2015

Am I the Only One?

How many times have I sat myself down over the past few months, intending to blog? Only to close my laptop and come away, defeated. Countless times. Only once have I managed to put words to paper and I didn’t publish it. It felt too raw. I sounded too angry. Now I think, why bother with this blog if I don’t write and publish? I must be honest about how I’ve been feeling. 

My doctor doesn’t think I’m depressed. She feels that if we can get the migraines under control I will feel a lot better. She is trying me on different preventative medication. Last week I had the worst migraine for years. It took me out for two days. Thank Goodness for Amelia, Roch’s PA. But maybe it will take more time for this medication to kick in. I feel sleepy in the mornings now. I lack motivation to write.

This week I am taking time off work, trying to take control. Back to recruiting another Personal Assistant. Do some writing, do some blogging, start the Christmas planning. Maybe I’ll get my hair done. 

We have just emerged from a weekend family visit. All Roch’s brothers, brother in law and cousin. How Roch enjoyed it. Football, pints and plenty of banter. How can I explain their presence in our lives? A blessing, truly. It’s a bit like being in the middle of a whirlwind - there is a furious energy about them which fills our house. Roch relishes it. Sometimes I feel a bit like a spinning top when they are all here together, spinning from one to the other - delicately balancing, lifted by their energy. When the door closes behind them, I come to a stop, slightly dizzy perhaps, but grateful. Each brother brings something different to our lives but they all bring their love for Roch and their fabulous goodwill towards me and the children. I want to thank each one of them. You all make a difference to our lives. And thank you, too, for listening and doing your best to make the visit work for us. 

So, below I publish a blogpost written earlier this month. Make of it what you will. I am not asking for your sympathy, I just need you to know. If you like me less for it, so be it. 

“Blogpost 15 November

What a struggle it is at times. Relentless and all consuming. Impossible to continue kidding myself that we can carry on as a normal family. We can’t. If our relationship and our family unit is to survive, we must have more help. For six years we have managed very well. Why now? Why after six years do I feel that i just can’t continue like this? First of all I guess his condition is worse. Visitors see him in his recliner or wheelchair and thank goodness, he can still talk to them, although it’s more tiring for him and generally more difficult. He drinks his beers and his spirits rise when he’s in company. He seems relatively unchanged, perhaps? In himself he is. He remains much the same Roch. Surprisingly cheerful, considering. Do they realise the effort it took to get him from bed to chair? The physical and emotional toll the last six years have taken on us all? 
The good news is that he has been reassessed for NHS Continuing Care and he qualifies. So the responsibility for funding his care will pass from the Local Authority to the NHS. You may not know the best bit. Remember the Prince of Darkness? He came to assess Roch in March. We heard nothing for months and so in September we chased them. After several phone calls and attempts to get an answer we were informed not only that the Prince of Darkness had left his post, but that he had never submitted any paperwork for Roch so his application wasn’t even in the system. They apologised and arranged a date for a new assessment to take place. 

Now we are in the happy position of having more hours funded by the NHS but so far we have had no luck in our attempts to recruit. A combination of exhaustion, migraines and lack of motivation has meant that I have not been as active as I perhaps should have been in recruiting. At the same time the situation here has been getting me down to such an extent that recruiting someone should have been my first priority, but I felt stuck, depressed and yes I’ll admit to it - resentful. Not towards Roch - after all, it’s not his fault - just angry that my life has been taken over by caring. What sentient human being would not be? Sad, so sad that this is what it’s come to for us. Here we are in the prime of our lives and I spend two-three hours in the morning, when I’m not working and when Amelia isn’t able to cover, getting my husband up, helping him to pee, hoisting him into his wheelchair, giving him his PEG flush and meds, lighting his cigars, holding his coffee cup with straw up to his lips, hoisting him onto the toilet, administering the qufora, transferring him to his shower seat, showering, washing, shaving, cleaning the stoma site, drying, applying various creams, drying him, dressing him, transferring him to his recliner, cooking food then feeding him…

That’s the morning routine. He’s so tired after the shower that he needs his ventilator again. Ipad, mobile phone, slippers, water/coke, more coffee and then the food preparation. Try doing all that with an incipient migraine and see how you get on. 
Some days I carry my duties as caregiver lightly, my spirits are lifted and I can see the difference it makes to him. I’m not stupid. 

I’d love to say that every day I am loving and gentle and giving. But you know what? I’m human. Most of the time I don’t feel like his wife anymore. I feel like his nurse and carer. I read about other wives/partners who are also caregivers and I think “How do they do it? How is everyone else so consistently gentle, kind and loving? Is that so? Am I the only one to sink, exhausted into a chair and hold my aching head in my hands, grieving for a life together lost. For my life lost. And yet I don’t want it to be over, I don’t want it to end, because when it ends, that is the end of him and what will I do then?”


  1. So very eloquently written and mirrors my feelings as I care for my wife, going through the same condition, albeit in a different order and quicker progression. So good to read your blog, in fact inspired me to write. I've found the act of writing has been helpful, even if no one reads it.

  2. Hi Nick, thank you so much for taking the time to read and to comment. It helps me a great deal to know that I'm not the only one and that the blog inspired you to write. It's really cathartic, isn't it? Keep writing and please keep in touch.

  3. So good to hear from you, Deirdre - I was beginning to worry about you all!

    Your feelings are exactly the same as mine were when I was with Colin 24-7. We had carers coming in for an hour a day in the mornings and this was my 1 hour away from it. My social life revolved around this one hour - if anyone was kind enough to want to meet me, they had to do so within this hour timeframe. Oh, and they had to bring wellies as this hour had to include walking the dogs!! Some people, God bless em, did embrace this new routine but others didn't and dropped by the wayside.

    I'm sending you a virtual hug to give you strength and just to feel that you're not on your own.

    Helen x

  4. Oh Helen, thank you for the virtual hug and for so generously sharing your experience. I don't know how you managed with only one hour to yourself in 24.
    It's good to know I am not alone. Much love. Deirdre x