Friday, 17 June 2016
People ask how things are, how we are. Most people don’t want to know the truth. Today I found myself answering someone as honestly as I could. I said that his condition continues to head downhill, that we have begun pump feeding at night as we are worried about his nutrition levels, that he is tired all the time, that it is seven years since diagnosis. That really, we are not feeling too great. This was met with dismay. So I rescued them and assured them that he could still enjoy a pint. Relief was palpable. We focused on the positive.
It’s all very difficult, isn’t it? People mean well and they are fond of us and wish us well. I do know that. And I am conscious in writing this honest blogpost that people will worry and that is why I hesitated before I began. But really I can’t protect you. He’s worse than he was, but that’s to be expected. It’s harder than it was, but that’s not surprising. It’s all getting tougher, but I think you knew that.
Sunday, 29 May 2016
Back from Clare I had to shift my focus sharpish. Before my holiday I had been asked by the MND Association to speak at Parliament before a joint meeting of the APPG on MND and the APPG on Carers about my experience of caring for Roch. Rt Hon Alistair Burt MP was to be in attendance and the purpose of the meeting was to discuss the Governments Carers strategy. It was a chance to put forward concerns and highlight the issues. On the flight home I began to think about what to say. I knew I had five minutes to speak and both the MND Association and CarersUK had requested that if possible, I include a number of points they felt it was important to stress to the Minister, both points of information and issues of concern. I decided that I would try to weave our experience around these points.
For an excellent report on the meeting I can do no better than refer you to the following link from the CarersUK blog. I hope I presented, in the time allowed, at least some of the universal concerns shared by my fellow carers, and not just those caring for someone with MND.
An impressive number of MPs attended and the meeting was chaired by Baroness Gill Pitkeathley.
I think so many MPs came along because so many have been affected by a caring role. One MP referred to the 'Army of carers out there' and it was generally agreed that more and more people are unexpectedly faced with the prospect of caring for a family member. I was happy to hear that there was understanding about how at the moment of diagnosis, life changes forever for the person who is about to be catapulted into a life as a Carer and MPs agreed that speed is of the essence in offering support and information at this early stage.
Afterwards I had the pleasure and privilege of meeting with Barbara Keeley MP, Shadow Minister for Carers, who spoke so eloquently during the meeting about Carers' needs.
|With Barbara Keeley MP and Richard Arkless MP|
|With our Tom, who supported me throughout the day.|
|In the Shadow of Big Ben|
|The Minister speaks|
I spoke also with Richard Arkless MP for Dumfries & Galloway, who recently lost his mother to MND. There is a shared understanding and mutual compassion between people whose loved ones have MND. After the meeting we hugged. He told me that my speech had resonated with him in all respects. All around me I saw the human face of Parliament and indeed Alistair Burt made this very point. We think of Westminster perhaps as a place very removed from us but the reality is that MPs and Peers are human too and the issue of caring touches so many - some disclosed their own personal experiences around caring. For all of us Carers out there this is a good thing, because it means it is an issue close to their hearts and they will want to make sure the new Strategy on Caring does right by Carers.
The Minister announced that the public consultation was to be extended by a month, so there is still time to have your say and a chance to influence the Government's strategy on Carers.
It's been busy lately and I've been lucky. In mid May I had a break from caring when Roch's long awaited respite stay at Princess Alice Hospice came round. For months those with my best interests at heart (and Roch's) had been encouraging me to take a break and get away, to do something just for me. I wanted to, but it took me a long time to get it sorted. The hospice stay was arranged well in advance (before Christmas) and I found what I thought would be the perfect holiday for me - a painting course in one of my favourite places in the world.
The course was called 'Abstracting the Landscape' and was set in County Clare, in the West of Ireland at The Burren College of Art, an extraordinary place which blends in perfectly with the limestone landscape of the Burren.
I can't describe how beautiful this place is and how much it means to me. For years our parents brought us as children on holiday to Ballyvaughan, a small village on the shore and when our children were young teenagers, Roch and I brought them there, to clamber over the rock and swim at the beach in Fanore.
In fact, the last time we were there was in 2010, the year after Roch's diagnosis. There was a strong current at Fanore and he struggled to bring himself ashore - the weakness in his legs and arms meant it was no longer safe for him. I remember that he fell on the wooden walkway, on the way back to the car. It was the beginning of the end of that kind of family life.
So I guess everywhere there were memories for me, happy and sad. Perhaps it shouldn't have come as a surprise to find myself overcome on Day Two. I seldom cry but something in me seemed to break and I found myself unable to stop. I hardly knew why or what had caused it. Our teacher told me later that she thought I was abstracting the landscape from within as well as without. I was unprepared for the intensity of the experience. I think almost without realising it, I had tapped into something deep inside and out it came. The studio was open 24 hours a day and so although I took myself off on Tuesday afternoon, back I went with Maura in the evening to make up for lost time and managed to produce some work.
|Abstracting from Within|
The level of dedication, skill and hard work in our group of Abstract painters was impressive and I was proud to be a part of it.
I cannot praise our teacher highly enough. Her skill as a painter is phenomenal. I found some of her work breathtaking. She makes it look so easy! We could not have had a more encouraging or approachable teacher - or one with more knowledge of her craft.
|Last Day Selfie with Maura and teacher Cora|
Surrounded by the beauty of the Burren landscape and the support and friendship of the group (not to mention the loving presence of my sister, Maura) I couldn't have had a better break.
Friday, 15 April 2016
For the last few months I have been avoiding the blog. I have been struggling with new medications to control the migraines. Fatigue levels have been high, mood has been low. Could it be the medication, is it the menopause, or is it simply that life with MND is so shit? I've been here before - in the sense that I have been reluctant to share on the blog. If it's not real, I don't write about it here because I have to be honest. On the one hand, I don't want these pages to be simply a boring moanfest - on the other hand, this is meant to be about the reality of living with MND and that's where I've been at.I put finger to keyboard early this month and was not happy with the result, but I publish it below to give you a flavour of the mood.
It's complicated having Carers here. Roch copes with it a lot better than I do. My room has become my sanctuary but although I have more time to write, I have hit a brick wall. I seem to have lost my motivation and my confidence has plummeted. The only way up and out is through and I know this but no matter how much I tell myself to get on with it, just do it, write ANYTHING, I stare at the blank page or at best produce a paragraph of rubbish and I don't know where I'm going with it.
So, welcome to the moanfest.
Blogpost 6th April 2016
Seven Years On - Does it get easier?
The word for me at the moment is Intrusion. For so long I looked forward to a time when the day to day caring tasks could be shared, giving me more time for myself, resulting in a less exhausted Deirdre. Now we have what might be called a team of Carers (or Personal Assistants) and I’m still not happy. I tell you now I did not anticipate how difficult I would find the constant intrusion into our home, our space. It’s not that they are not lovely people or that they don’t look after Roch well but essentially they are strangers in our home. I thought I would get used to it but having someone here every day - although this was the plan, the plan for ME - I find incredibly difficult at times.
I mentioned this to an old friend recently, and I found her response very helpful. Maybe some of you will too. She reminded me of a time in her own life when she had to accept help in her home. It made her angry, she told me, and she resented the intrusion so much that she sometimes found it difficult to hide her feelings from the people who came to help her. She said she felt so bad about this that she spoke to her priest about it and he told her “You don’t have to be grateful, you just have to be civil.” She said that helped her enormously.
It can be hard work, too - there are lots of issues to deal with, both personal and practical. We have a lot of help from RUILS but employing a bunch of Personal Assistants brings its own challenges in many ways. Rota, training and induction, insurance, payroll (Roch and RUILS deal with this) - simple human interaction feels beyond me sometimes. Their presence, welcome though it is on a practical level, is a constant reminder of how much further this disease has ravaged him physically. It’s hard for him of course. He’s not an old man. He’s only 54 and who wants to be wholly dependent at that age? I know it’s hard for the kids, too. It’s been seven years and the last four years have been gruelling. Our kids are marvellous. They are, quite simply, the Blessings of my life. People tell you to count my blessings and I have.
Count Your Blessings
The weight of her head on my shoulder,
the warmth of his fingers in mine;
these are the blessings I treasure,
their hearts beat the measure of life.
After a long absence, I recently attended an MND Carer’s Meeting. My situation was very different from that of the other Carers present. Both had partners recently diagnosed. I feel for them but how can they support me? My needs are very different from theirs. I mentioned that now we had Carers to help.
“What do they do?”
“Well, they get him up in the morning and shower and dress him…” I began.
“Oh I don’t mind doing that for my partner.”
I know the remark was less a comment on me and more a personal reflection on their own situation, perhaps checking in with themselves about where they were with that task - but it was difficult to hear and inside my immediate response was defensive and angry.
“You wait until you’ve been living with it for seven years, mate, and showering your partner for four of them.”
Of course I didn’t say that.
Roch calls himself a freak. His Neurologist calls him an Outlier. I felt like an Outsider, a Veteran, if you will, somewhat jaded by experience, careworn and still struggling with feelings of guilt, anger, resentment, grief. But I didn’t feel I wanted to express any of those feelings there. Our Seven years brings others hope but the reality is that the longer it goes on the harder it gets.
Tuesday, 2 February 2016
The new year began with a chest infection for Roch. Lucky we had our emergency supply of antibiotics on standby and once again, we nipped it in the bud before he could get really ill, although he was quite unwell for some days and it took a while for him to recover fully. I didn’t want to diagnose and dose him myself so as advised at the time the tablets were prescribed, I called our District Nursing Team. It was just after the New Year and they were very busy and told me to call the GP, but the line was busy and I couldn’t get through, so I called NHS 111. I spoke to a clinician who asked lots of questions and eventually advised me not to give him the antibiotics as Roch had said the cough was dry, although he had a slight temperature.
I didn’t argue with her although her advice to me at the end of the call was so patronising and demonstrated clearly that she did not have a clue about MND.
From my recollection: “What you’ll do now with the antibiotics you have is - you’ll give them back to your pharmacist and call your GP as and when you need an appointment.” You stupid woman, I thought. Now I don’t trust any of your advice. Later that night, when Roch tried to cough and (hurray!) managed to bring up some suspicious matter, I decided to give him the antibiotic. Next day I called the GP to let her know I had started him on antibiotics as he had a chest infection. She was fine with it. Some days later our lovely District Nurse Fiona advised that next time - if there’s a temperature and a cough, just do it. I will.
All the Consultants we have seen recently - Dr. Matthew Hind at the Brompton, Professor Al Chalabi at King’s College and Dr. Burman at King’s College - have asked if we have an emergency supply of antibiotics on hand.
Parnika, Roch’s dietitian visited last week and brought a weighing contraption with her. This was fixed to the hoist and together we weighed him. Not sure how accurate it was, but he has certainly lost weight. He was 68.3kg in July and now he’s 63.3kg. This means more regular supplemental feeding and careful calorie counting. We’ve got to build him up. I think it’s been a gradual loss - he often has little appetite and stubbornly refuses the supplements. But he probably lost some weight when he had the chest infection. We are all busy stuffing him now.
January saw Team Roch grow and now, by George, I think we’ve got it! Marianna (who worked with us for a time when Jenny left) is back with us and will do two nights a week, Amelia will do her three days when I am at work and the wonderful Agnieszka has joined us - she and our good friend Carolyn will pick up the rest of the shifts.
Both Roch and I were delighted when Carolyn offered to help. She saved my sanity before Christmas when she said she would come in for a day here and there to give me (and Amelia) a break as Amelia was trying very hard to be there for us - not just when I was at work, but on other days, too, so that I would have an opportunity to be 'off duty'.
|Welcome to Carolyn!|
It’s always lovely to see Carolyn at the door - her presence is so bright and cheerful and she has such a lovely sense of fun. As some of you know, Roch worked with Carolyn back in the day and it’s great for him to chat to her about work and catch up on news and the world of housing.
A Little about Agnieszka
|Agnieszka - the newest member of Team Roch|
Amelia kept telling me the right person would come along but I was beginning to lose faith. Then, out of the blue we were contacted by Agnieszka, who through a series of personal circumstances, finds herself looking for a position where she can work flexible hours. She and Amelia worked together in the past and that's how she knew we were looking for someone. There was an immediate connection. Cheerful, gentle and with a great sense of humour, Agnieszka is a nurse, registered in Poland but working in the UK in the Caring profession; she lives near us, she drives - and she likes football! If she isn't an answer to prayer, I don't know what is.
So Amelia, you were right and the right person has come along. So I give thanks for Agnes. Folks, we may be able to settle into a life where we are a family again and Roch and I can enjoy just being together.
An Interesting Meeting with The Professor (no, Roch not that Professor)
In fact we talked about being a family again at Roch’s appointment with Professor Al Chalabi last Thursday. He asked me if I had had recent respite and then reminded us that 2016 is the Year of the Carer. I told him how important it was for us to organise carers for Roch so that we could simply be a family again and Roch and I could enjoy our relationship as husband and wife. We agreed that the whole dynamic of the relationship changes when your partner becomes your carer and I mentioned something Kate said to me recently. She said she felt that it had been unfair (although nobody’s fault) to have told us to view Roch’s illness as terminal and make preparations for the end. Given the slow progression of the illness for Roch, over the past few years we have had to shift our focus from “Goodbye” and begin to live and plan for a future where Roch is still with us, but severely disabled. It’s a completely different ball game. Back at diagnosis they had no way of knowing that he would survive this long and MND is always fatal so it’s hard to see how their advice could have been different.
Professor Al Chalabi paid us a beautiful compliment about the strength of our relationship and commended the way in which Roch and I had adapted to the changes throughout Roch’s illness. It meant a lot to us.
To update you in terms of Roch and the progress of the disease - Professor Al Chalabi says that Roch is now in the 2% of patients with MND who live beyond eight years. He counts the years from onset of symptoms. There is no reason to suppose that the progress of the disease will hasten - it’s likely that it will continue at the same pace - a gradual, slow decline. The good news, he added, is that given Roch’s longevity, he may well live to see a treatment emerge - a treatment which would not cure the disease but could very well halt its progress. Now folks don’t get too excited about this. He wasn’t promising anything and it’s important to understand that. Roch has mixed feelings about the possibility of any future treatment - the worse his condition, the less welcome a treatment would be which would keep him in a ‘state of decrepitude’ as he says himself. Professor Al Chalabi will make no more predictions - Roch is an outlier and we will just have to wait and see.
Roch also had an appointment with Dr. Rachel Burman, who is a Palliative Care Consultant, specialising in MND. In the past he has spoken to her of intrusive thoughts of death and how the end will be for him (Roch has given permission for me to speak of this here). Without being patronising, Dr. Burman encouraged Roch to think about his day to day life and consider whether he had enjoyed his day - yesterday, the day before - was he looking forward to anything? She suggested that he try to put away thoughts of the end (nobody knows when it will be) and concentrate on his life now. She prefaced her suggestion by saying that she recognised how annoying it might sound coming from someone who was not living with MND and inviting him to wheel forward and give her a punch if he felt annoyed by it! She also told him that she felt inspired by him and that she thought he was amazing and had grown as a person throughout his illness.
You and I know this is true - how good that the Consultants recognise it.
As always, the faithful Gerry was chauffeur for the occasion. He makes an otherwise onerous expedition enjoyable. The journey flies by. This time we got to see the Queen’s Horse Guard at Hyde Park Corner. It was such an archaic sight and felt so weird to see the sun glinting on their silver helmets. I imagined them galloping towards ranks of infantrymen, enemies of the Crown, brandishing their swords. We agreed that the horses looked in better shape than any of us!
Wednesday, 6 January 2016
|Present time - sharing memories|
I failed to anticipate just how tiring Christmas preparations would be, combined with the demands of the caring role and less help for us over the holiday period so found myself in bed for much of Boxing Day (St. Stephen's Day to my Irish friends). Roch, Kate and Tom went to Griffin Park for the Brentford match. (Brentford drew to Brighton and Hove). Evening festivities recommenced when they got back and I once more rose to the occasion.
|Magnificent pudding provided as always by our Mauri|
|At Griffin Park|
|Christmas Day selfie!|
I made a promise to myself on Christmas morning when I woke up feeling more exhausted than I ever have before at Christmas: new family tradition will be Christmas Eve takeaway. So far, that's my only concession to MND but I suspect there will have to be more. It's a shame, because I love it all. I'm thinking the Christmas cookies have to stay...
Still, despite fatigue and the occasional tearful moment (many thanks to my wonderful children for all their help over Christmas and for providing the occasional shoulder), there were lots of happy moments together and new memories to treasure.
|"It's a song!"|