In New York

In New York

Tuesday, 22 May 2012

A funny old week

It’s been a funny old week. I saw it stretching before me, a world of possibilities, lots of time to myself, time to sleep, to write. In fact, although I did nap on occasion during the day (so tired!), I found when I went to bed early that I didn’t fall asleep quickly, but had to read for a few hours until I could drop off, then woke early and found it difficult to go back to sleep. I worried away at some poetry every now and then, watched over the studying Tom and wandered aimlessly round the house, which felt far too quiet and empty. Maybe next time, I’ll try to get away for a few days.

I did spend one lovely evening watching one of my favourite films (not Roch‘s kind of thing) and I definitely ate too much chocolate! A highlight of my week was a visit to Twickenham Rugby stadium to watch Leinster winning the Heineken Cup! Thanks to my brother for a great afternoon.

I went to see Roch a number of times. It’s a lovely place, The Princess Alice Hospice, in an almost rural setting. It helped that there is a very nice pub nearby which serves delicious food. There were several visits to the Prince of Wales! We spent a pleasant Sunday afternoon there together, just the two of us. Although he’ll be glad to come home today, I think the stay was okay for him. As he remarked to one of the nurses, “It’s not as bad as I thought it would be.” A good deal better, I think. Tom, although in the midst of exams, went to see him on Saturday and they watched the Champions League final together. It was great that Tom had the opportunity to see the Hospice for himself and spend time with his Dad there. Seeing Roch there was not too traumatic for us as he is relatively well at the moment. Many of his fellow patients were very ill indeed and their presence is a reminder, if we needed one, of the main purpose of the place. It is, in the end, a place where people go to die, but  palliative care began for us when Roch was diagnosed and will continue through the years of his illness and I thank God for it. Roch cannot praise the nursing staff highly enough, or Donna for the careful preparations made for his visit.

But it will be good to have him home.

Last night I went to the first MND Carers support meeting for West London, arranged by Mick Stone, an Association Visitor with the West London branch of the MNDA. It was a mixed experience, depressing, moving and uplifting in turn. But I was glad to be there. I met a group of inspirational people, all caring for family members they love, brought together by the tragedy of this awful disease. So what am I left with this morning? I am feeling angry.

Once again the words ’postcode lottery’ came up. This is a phrase frequently used these days but its meaning took on special force for me last night.  I am grateful that we live in Richmond, as some MND  families , living in other areas, have little or no support and struggle for services which I was beginning to take for granted. No more. On behalf of those people, especially those whose relatives have a rapid form of the disease, I feel angry today. Change upon change in condition occurs, deterioration is fast - not only do they have to cope with their feelings about what they see happening to their mother/father/partner, but they have to do so with, it seems to me, little or no professional guidance or help about what to plan for or advice about what would help, financial assistance etc. So glad Lorraine Carter was there from the MNDA to take up the baton on behalf of those present, but we all need to do what we can to make sure to spread awareness of the disease and its devastating effects (one carer last night described diagnosis as an ‘earthquake’ and I thought yes, what a good way to describe it) and the need for the same level of services and support to be available everywhere around the country to all who are affected. The usual problems were raised - hospital staff who don’t understand what MND is, GPs who fail to diagnose early and later fail to provide adequate care after diagnosis. It’s not their fault, many GPs will never see a patient with MND, others may have one MND patient in their entire career. But that’s no help to that patient, or their family. How could you not feel overwhelmed as a carer?

I felt grateful that, for Roch, the progress of the disease is slow, and that we have had, so far, so much support and help from so many. I know there are others like us. But I wish I could do more to help those who are not so lucky.

Last night I glimpsed a future which frightens me but I saw how bravely others live a life devoted to caring for relatives suffering in more advanced stages of MND and took heart from their courage and their tenacity. I learned a lot last night from my fellow carers and I look forward to more opportunities to meet with them.

Saturday, 12 May 2012

The Hospice Stay approaches

‘What should be the key factors for respite care?
  • To provide a place of care within fixed dates which have been agreed prior to admission.
  • To continue the patient’s normal routine as closely as possible, with changes only being made if clinically indicated.‘ Oxford handbook of PALLIATIVE CARE

  • The Hospice stay is approaching. I know Roch is apprehensive and frankly, I’m not sure how I will feel when he’s there, but overall I think it’s come at the right time. The wonderful Donna, our Hospice nurse, came to visit on Tuesday and we had a very productive and reassuring chat. It’s a ‘respite’ stay, which means that the stay provides a break from the difficulties of the situation for Roch, for me, for all of us. For Roch, it’s an opportunity to get to know the staff at the Hospice, and for the staff to get to know him. It comes at a time when he is well and he can communicate his needs, his likes/dislikes. Donna consulted with us and went away with a care plan, so the staff there will know how much assistance he needs with everyday tasks, what equipment he may require, whatever he might need to make his stay a pleasant one.

    He will have a room to himself, ensuite, with a door out to their garden or courtyard, or a room with a decking area right outside. He can order a cooked breakfast (a full English!) every morning, made freshly just for him. The thought of that full English cooked breakfast has made a difference!

    There will be a small fridge in his room - vital information volunteered by Donna before I even had a chance to ask.

    She is anxious to reassure him, “It’s not a prison,” she says. “Your friends are welcome to come and visit you, bring you out for lunch, round the corner to the local pub in the evening.”

    She has alerted the Chaplain - she anticipates lively discussion and debate between them. There is a small Chapel or at least, a room for private worship and reflection. I notice that she doesn’t mention this. She knows him well enough to know that this will not be a selling point for him.

    We discuss what else he may need to make his stay more comfortable. We have no way of getting the electric wheelchair there ourselves, so Donna quietly ponders this. Later she calls to say that the wheelchair will be collected on the day of admission, before we leave the house. It will be there for him when we arrive. So, he will not be entirely dependent.

    ‘One example of respite care is the nurse-led approach. The respite nurse would carry out a home visit prior to the patient’s admission to discuss their care needs during admission, write a care plan that includes the patient’s routine and answer any questions. The same nurse would liaise with in-patient staff prior to admission about any specific requirements, e.g. nutritional needs, mattresses, equipment etc. This respite nurse would then admit the patient to the hospice, review them during the admission and assist in organizing their discharge.’
    Oxford handbook of PALLIATIVE CARE

    So - preparations have begun.
    Here’s a peek at some of the essentials on our list:

    Clothes (obviously) ie underwear, socks, tee shirts, jeans, tracksuit bottoms, braces, belt, shorts and tee shirts for bed
    The trusty rollator
    The sock putter-on-er (essential piece of kit)
    Moist toilet roll (no bio bidet I’m afraid)
    His towelling robe
    Two small towels (large towels are too heavy now)
    Nespresso machine (he will no doubt be offering espresso to staff, patients and visitors alike)
    Espresso cups
    Nespresso pods (a goodly supply)
    CIGARS and lighter(s)
    Beer (preferably Okocim)
    Kindle charger
    I-phone and charger
    PC & Charger
    Medication: Riluzole, quinine, baclofen, lorazapam, Vit E suspension, Vit C, Loperamide
    Blanket/bedspread from home
    Toilet bag: toothpaste, toothbrush, shower gel, shampoo, mouthwash, dental sticks, deodorant, facecloth.

    ‘It is widely accepted that keeping patients at home weighs heavily on those family members who will provide care and support. Caring for someone on a daily basis can be very tiring, both physically and emotionally, leading some carers to feel unable to manage, which may result in unplanned admissions to hospital. One strategy to help carers in this situation is for hospices to offer planned respite care, either as an in-patient or on a day basis within a day hospice, to enable carers to have a rest from caring. This may be sufficient to enable them to ‘recharge their batteries’ and continue the care they provide, thus allowing their family member to stay at home.’
    Oxford handbook of PALLIATIVE CARE

    It gives me a chance to rest, time to myself. Donna is firm with me “You’re not planning to visit every day are you?” She asks me. “The ward staff would actively discourage that.”
    But no, I’m not planning to visit every day. I need some headspace, I need to sleep. If I feel like it, I will write. I have ordered a book from Amazon and hope to have time to read. I plan a DVD afternoon - just me, the sofa, the TV and some chocolate. I have taken the week off work. I begin to crave time to myself.
    Tom has exams that week and will be on study leave - but that’s different, Tom’s my boy.

    We have a bit of a running joke going, which Donna is party to - the ‘All about Roch joke’.
    ‘It’s not all about you, you know, Roch,” she says, laughing.
    “Oh yes,” we say together, in mock protest, “Yes, it is.”

    But we both know that this is about me, too.


    Tuesday, 8 May 2012

    "May the odds be ever in your favour..."

    Well, we saw ‘The Hunger Games’ yesterday. Congratulations go to Eileen, who guessed correctly! Sci-fi, thriller, bit of violence, little bit of romance. Ticked a lot of our boxes. I would note that the wheelchair space is too close to the screen so I have a film hangover headache today (yes, truly film hangover).  However, very pleased that we made it, although I can’t say it was stress free. It seems to me that if you are disabled, the odds are not usually in your favour...

    We left lots of time for our journey, which was just as well because the traffic into Kingston was animal. We had been hoping to investigate disabled parking close to the cinema but by the time we actually got into Kingston, there was no time left to explore. So we parked in the Bentalls car park and wheeled away briskly, manoeuvring smartly between pushchairs and toddlers, strolling couples and heavily laden shoppers. Down in the lifts we went, out onto the street and zoomed along to the Odeon. When we got there a friendly staff member, standing by the lift informed us that the lift was out of order. She was stationed there to accompany disabled customers up to the cinema floor via the goods elevator. So she brought us outside, round the corner and through the service entrance, so that we could use the goods elevator. She was very friendly and chatty (good luck house hunting in Cheshire next week, Jade!) and delivered us without incident onto the box office floor.

    My heart sank as I saw the melee of people before us, a long queue to collect tickets from the machines, and an even longer queue for the box office. Jade was unable to find a staff member free to help us (their usual procedure, she said) and had to go back to her post, so we joined the queue for the box office, which is what I had been advised to do, when booking the tickets. Within minutes I realised that this was too stressful for Roch and the queue was moving so slowly we decided to move back, park him to the side and for me to queue at the ticket machines. At this point, I was beginning to think it might all prove to be a waste of time, as we were certainly past kick off for the programme start and I had no idea what time the actual film showing was to begin. Eventually I got the tickets and made my way through the crowd to Roch, who informed me that he had just sent a staff member looking for me. I went in search of her and she told us where to go for help after the film. By this time we were both dying for the loo, so after a (relatively) quick visit to the disabled toilets (full marks for disabled toilet facilities Odeon Kingston - now if you could just prevent the able bodied from using them so disabled people don't have to wait - how annoying is that?) we finally arrived into the cinema. The seat beside our wheelchair space was taken (not by a carer I might add and no wheelchair in sight), but the other wheelchair space was free, so we slotted in there and got settled - amazingly just as the film began! Whew!

    But I’m so glad we made the effort. Next time I won’t arrange to go to the cinema on a Bank Holiday, leave EVEN more time to explore disabled parking nearby and enquire in advance if they have their lift fixed - Jade seemed to think they were planning to replace it completely, which might take longer but better plan in the long run, perhaps. I don't fancy getting stuck in their lift. I feel a letter coming on but must just say a thank you to the Odeon staff who helped us - all were friendly and obliging. It was just so busy there yesterday that it was difficult to find a staff member free.

    The film, by the way, was excellent.

    Sunday, 6 May 2012

    Apologies and performing seals

    Reading over my last blog entry I realise with some dismay that the last paragraph may be read as a discouragement to those who would wish to share with me their experience of MND or talk to me about any sadness in their lives. In case that’s the way you interpret it, allow me to explain.

    The situation I was referring to (and having a bit of a rant about) comes about when people produce a tragedy - NOT central to their own lives, but which in their opinion is greater in comparison, than the tragedy of living with MND/caring for someone with MND. They do this, I think in the well meaning, but mistaken belief that when you hear about their chosen tragic situation, you will feel better about your own. I just wanted to say that it doesn’t help me. If you have a broken leg and hear about someone with two broken legs, you may feel sorry for them, but it doesn’t make you feel any better about your own broken leg. If you are caring for someone with MND and someone who has no direct experience of either living with MND or caring for a loved one with MND tells you about someone they know who e.g. has just died suddenly (comparison being sudden death very traumatic and all that entails - aren’t we lucky having time to adjust? Or something…) it doesn’t make it any easier to watch the disintegration of your loved one over time. Oh dear this is turning into another rant. I hope you get my drift. I certainly don’t object to hearing sad stories and I hope I would be sympathetic but just don’t expect it to make me feel better about our situation…because it won’t.

    Anyway, I don’t think we can ever compare tragedies - every terminal illness, bereavement or loss of a loved one results in suffering and I would never presume to say that my situation is worse than anyone else’s. So let’s leave it at that.

    As you have guessed, I’ve been feeling angry and depressed by turns lately, which makes everything difficult. I also slept really badly over a number of nights last week and that always, always makes me feel worse. But the good news is that although I am tired, I am feeling up to things again. I managed my three days in work (ups and downs there, too), although on Thursday evening I sat in a more or less vegetative state in front of the TV for most of the evening. There was a moment when I went into performing seal mode, when Tom tossed me a chocolate bar from across the room and I rose up, clapping the bar between the palms of my hands, and sank back again, with a yelp of thanks. Otherwise, I just sat in a stupor watching past episodes of Frasier/ Friends (Roch was out with some real friends!)

    However, here we are on Sunday, lots of laundry done, kitchen clean, fridge clean and sorted, shopping in, hair newly cut - chicken roasting for dinner. Roch is doing some work online, Tom is studying for his AS exams. We’re okay.

     I have booked two tickets for the Odeon cinema in Kingston for tomorrow, which I am assured has excellent disabled access. So hoping to have a bit of a bank holiday treat for both of us. What film? Wait and see! Bit of romance for me, bit of violence for Roch. See if you can guess what our choice is for tomorrow. He likes sci-fi and westerns (I don’t object to them) and war films (not my first choice). I like a good thriller, preferably with a bit of romance. We don’t always agree on comedy choice. I like historical settings - so does he, but we don’t always agree on period. See if you can work it out, if you’re interested!