In New York

In New York

Saturday, 15 October 2011

A visit from Donna

This week I went back to my writing class. I almost didn't make it but I'm so glad I did. This was Week three and I've missed the first two, once because of a hospital appointment with Roch and once for a doctor's appointment and feeling generally unwell. Anyway, I was in two minds about going because Donna was coming to see us later that morning and I really didn't want to miss her visit. Donna is Roch's Hospice Nurse and as you may remember, her visits always cheer us up. Now you wouldn't have thought that, would you? We can talk to Donna about just about anything. We don't just talk about death and dying - but we can if we want to, and we do, sometimes. Of all the many professionals we have met and who support us, Roch and I agree that Donna has been the star. That's saying something, because so many of the people we have met so far have been exceptional. This week, it was time for a catch up with Donna. The last time she came, Roch told me that she watched him make her a cup of tea. She sat and chatted and watched him. It's her job to notice things, to look out for changes. This time she asked him if he would like her to make the tea. This time he said yes.

One of the things he talked to her about this week was his Advance Directive. He's been working on this lately. It's a document which records his wishes regarding the witholding of medical treatment and giving guidance to his health representatives (me, Kate and others he may wish to nominate) if he can no longer communicate. It is also sometimes called an Advance Decision to Refuse Treatment. All very sobering but he says that having given it some thought and begun to work on it, he feels better about things. As Donna says, it's a draft, he can go back to it whenever he likes to update it if he changes his mind about anything.
It's a year since Gerry McDonagh died and I refer you back to my post of 3rd November 2010, where I talk about Gerry's admission to hospital and the circumstances in which he passed away. I'm sure Gerry and his wife Pat are very much in Roch's thoughts at this time, as they are in mine. The fear of the end is never far away for Roch, I think, and drafting his Advance Directive is one way to attempt to have some control over what happens. I find it hard to think about. I try to be matter of fact about it when he talks about specifics but it's not easy. I am conscious of a strong desire to get up and walk away. But I don't.

Other things Donna noticed, and we talked about - he's losing weight, but still not enough to worry about. His upper arms and his legs are thinner now. He's still eating and drinking normally, but his arms are getting weaker. Sometimes he finds it difficult to raise the fork or spoon to his mouth. He can still feed himself - he supports his right arm with his left hand and I haven't had to feed him yet. He won't like it when it comes to that, but he has mentioned this to the occupational therapist, Rachel, and she is coming back to us, hopefully with some suggestions. She has already provided lighter cutlery.
We talked about our visit to Tiz and the arrival of the BiPap.
Donna always asks about his reading material which we laugh about because it's never very cheery. She encourages him to stay in work while he can and I am with her on this. Of course, it's his decision but he is so good at what he does and working makes him feel good about himself. In general, he doesn't feel so good about himself anymore.
I think she was cheered by the fact of the coming Stag weekend. When Roch decides to do something, he really goes for it and he is really looking forward to this. All the brothers plus old friends from home and sound mates from London will be there. Sixteen in all, I believe.  In fact, I'm not sure Dublin knows what's in store, but if it survived the Viking invasions, I'm sure it will survive Roch's Stag weekend.


  1. Just seen your article in Thumb Print and it rang many bells. I am the Alison on the page before in Thumb Print (page 15). If you want to get in touch for friendship, support, ask any questions etc feel free. It was good to read something from the carers point of view. What a journey it is!

  2. I heard about you via 'Thumb Print' and read through your entire blog yesterday.

    I too am a carer for my partner who was diagnosed with MND is 2008 but who has probably had the disease since 2002/2003. We are further along the path than you and Roch as my partner can no longer dress, wash or feed himself and needs assistance with all aspects of his life.

    When you described your feelings of sadness and fear/panic for the future, you could have been describing me. I can honestly say that I know how you feel and totally understand what you are going through. In a twisted sort of way I was comforted by the fact that there was someone out there who totally understood how I feel, although that's in no way wishing MND on anyone.

    You say you have your writing and started the blog(s) and I too started my blog to find 'me' in all that's happening to us. However, I've taken a different approach and my blog is, in a way, my social life and the MND, although it actually defines and restricts my life as well as that of my partner, rarely gets mentioned. It's my bolt hole where I try to focus on myself. It's what ever works for the individual isn't it.

    I'm following your blog now, but feel free to contact me if you ever need anyone to talk to or an understanding shoulder to cry on!


  3. Me again! Sorry, i just realised I missed out the whole purpose of contacting you.

    I too suffer from migraines (and the fibroids/hysterectomy!!) and it was a constant worry about how I was going to manage when I had an attack. I found out about the Social Services Emergency Carer service who will, once you register, serve as a point of contact if for any reason (ill health, late home, accident, etc) you cannot fulfill your carer duties and they will make sure that the person is looked after properly until you are able to take over again. I'm registered but have never had to use it yet.

    Also maybe consider having a keybox fitted so that in an emergency people can get in to the house to assist. Ours was fitted by the Wiltshire 'Bobby Van' who look at security needs for vulnerable people - perhaps you have something similar in your area. We had to pay £50 for the keybox but provision of a new door lock, chain, spyhole, 2 smoke alarms and all fitting was provided free of charge. A brilliant service.

  4. Hi Deirdre
    I too found your blog through the Thumb Print magazine. I always read the magazine with a degree of trepidation, in case I read anything I don’t want to see and in case it makes me sad. Its full of good things, but also many reminders of the negative aspects of the disease.
    We live in Herts, and Rob has recently transferred his care to the London Neurological Hospital in Queen Square, who have proved to be so much better than the local consultant we were under. He too has recently completed an Advanced Care Statement – a difficult and frightening process for both of us. I am glad we have done it now and can put it away and forget about it for a while.
    Reading your blog made feel as though someone was writing about me. I feel, at time, achingly lonely and sad, despite having lots of very caring friends and three lovely grown up children. Coping with this disease is a roller coaster ride that no one else who is not going through it themselves could possibly understand.
    I could write a lot about our experiences and how we have coped with the increasing lack of mobility and independence for Rob, but am not sure if this would be of interest – you probably know most of it and could tell me a lot of things.
    I am 50, Rob is 63 and we have three children between us who are 38, 27 and 24. My son Tom has a girlfriend called Katy, so reading your profile made me smile when I saw those names. I have given up work to look after Rob, formerly I was a PA/Office Manager working in Newbury. We moved back to Hertfordshire to be close to family and friends as soon as Rob was diagnosed.
    We try very hard to be positive and to make the most of each day as it comes. We don’t think too far ahead and we take every opportunity to travel and do things that we can.
    Be sure, that there are others going through the same things as you are, there just aren’t many of us out there.

  5. Hi Deirdre - I read your article in Thumbprint and think I need to start blogging to clear my thoughts. My wife Carol was diagnosed with MND in 2009 at the age of 44 and the last 2 1/2 years have seen rapid progress to the point where she is unable to move anything except her head, cannot speak and is peg fed. It's heartbreaking to have to sit and watch such a vibrant, loud, funny and fantastic lady waste away in front of your eyes - especially when her brain is just as active as it was when she was training to be a nurse 3 years ago. We're past the "average life expectancy" point so everyday is a bonus - although sometimes it doesn't feel like it. Carol's smile can still light up a room and her warmth is clear for all to see - life can be so cruel. Your blog has made me realise I should write things down - even if nobody wants to read it - it's a way to organise things, and rant, and replay what's gone on so I'll give it a go. Thanks for the push and I wish you and Roch all the best. Cheers - Mike (carolmike25)

  6. Hi Deirdre

    I too saw your article in Thumbprint and can relate to your feelings. My husband was diagnosed in January 2008 and at first affected his legs - he has been completely wheelchair bound now for about 18 months. He's now started to lose the strength in his arms and I have to help more with feeding etc.

    My husand refers to it as 'Mr & Mrs MND' - something that wasn't invited into our lives but if they must be here, they can sit quietly in the corner and not make any fuss, thank you very much.

    Being a carer can be a very lonely existance - I still work full-time (although will have to think about reducing my hours soon) and any support in our area is during the daytime. People stop me in the street and ask about him but very rarely do they ask how I am. You know your true friends are the ones who do ask!

    I'm going to read your blog in more detail over the weeks but I already know that I've found someone who truly understands what it feels like.

    Take care.