Meanwhile...of great things and small.

So I wake up last Sunday night and my back is in spasm. I suppose it’s not surprising. There is a theory that stress will do that to you. But I also know I did something to bring it on. I can’t exactly remember what that was, but some awkward movement, some twist and pull finished it off. The upshot was two days off work and a visit to my physiotherapist. So, he tells me my pelvis is out of alignment and one leg is longer than the other.  I have been advised by a colleague to acquire a parrot. Thanks Susan. Exercise is good – walking especially. Some gentle back exercises. No Pilates for the moment (actually I haven’t been to Pilates in ages) no massage – that would be the wrong thing. There is lots of inflammation, so I have to wait for that to go down. It’s getting better and I went to work on Friday. It was painful to drive, but I could actually do it. I couldn’t have driven on Monday, that’s for sure.

Anyway, it gave me a fresh insight into one aspect of Roch’s condition. When you can’t do things for yourself and you have to rely on other people, it’s hard. No bending down, no lifting, no reaching or stretching. You’d think I’d be grateful as it meant there were so many jobs around the house that I couldn’t do. But I just found it frustrating to wait for Tom or Kate to do them instead and I certainly don’t have Roch’s patience, as he waits for tasks to be carried out for him. We were like two unfit ninety year olds this week, shuffling slowly and painfully around, easing in and out of chairs.  

On Thursday the lovely Shelley (Occupational Therapist) arrived with someone from an equipment supplier, so that Roch could scope out a new piece of equipment – planning for the future. There we were, as I say, like two ninety year olds, gazing at what was basically a hospital commode in our living room. Of course, it makes sense.  Before a hoist is needed, we’ll need to be able to shift Roch onto a moveable toilet frame and it was important to take measurements and discuss requirements, including add-ons for different stages (like neck support). They are ordering a commode frame which can be wheeled over the bio bidet, or used with a pan in the bedroom, or used without the pan to wheel Roch into the shower.  It makes perfect sense and still we gazed in a kind of depressed disbelief. I’d say it felt like we were practising for old age, except it isn’t, is it? At least, not in Roch's case. Funny, an acquaintance asked me how my husband was recently and then told me that she’d watched a programme about the care of the elderly. She said it made her cry. I looked at her for a moment. I saw how she had made the connection, but it still made me cross.  I told her “Roch is 50.”

Anyway, Shelley was lovely and made it much easier to contemplate and discuss the use of commodes. I’m not sure her companion was quite prepared for Roch’s question about how to deal with the smell. It’s a good question. He doesn’t want the downstairs of our house to smell like crap. Shelley suggested the match trick. Light a match and blow it out, the sulphur smell helps to mask the stink. Like Scarlett O’Hara, I won’t think about that now.  Monika, I will cross that bridge when I come to it.

Credit where credit is due, Shelley is determined that we will be prepared and that the right equipment will be available when it is needed and with not a moment’s delay. She knows what motor neurone disease is.

But I looked at that commode and I thought of other wives, other partners who care for their loved ones with motor neurone disease. I thought of carers whose partners are further along in the journey than Roch. We are following the same path.  I know for them there are days spent in a seemingly endless cycle of transfers on and off the commode, wiping, cleaning.  They say that some days are harder to bear than others. We’ve talked about the ‘crushing sadness’ of watching the physical disintegration of our partners. It’s hard for anyone else to understand what that's like.

We weep and we wipe. That’s what MND wives (and MND husbands and partners) do.   I believe that there is a special kind of love in this and a special kind of courage. This is sharing the darkness.
Mother Teresa said “Not all of us can do great things, but we can do small things with great love.”

That's all we can do. The great things go down in history, are recorded on film, make the headlines and that's as it should be. They inspire us. But meanwhile, in countless homes all over the world, small things are done every day, with great love and I think that's a great thing.

 

So, meanwhile...

There’s a lot going on here. We are in the middle of our application for Self Directed Care for Roch. A number of people are helping us with this – all of whom have been an absolute pleasure to work with. I think Team Roch can now rival Andy Murray’s back up team. An Occupational Therapist – Shelley – carried out an assessment to establish whether there were any new equipment needs. A social worker – Yvette - came to do the Self Directed Support Assessment and left us with the Financial Assessment form to complete (I hate forms!). This asks about our income, expenses and savings. The Council needs to work out whether we will have to make a contribution towards the cost of the support (this is likely).  The Support Assessment has been completed and the Financial Assessment form has been submitted (although they may come back to us on that one, requesting copies of evidential documents). Yvette biked through the rain to collect the form from us!

Once the likely amount of the personal budget has been worked out, a Support Plan has to be written up showing how the money will be spent to support Roch. We have been helped by a Charity in Richmond called RUILS (Richmond Users Independent Living Scheme) to prepare this and it is almost complete, thanks to Paula from RUILS, who also cycled through the rain to visit us at home. The plan is to employ two people to help Roch when I am at work. In preparation we have set up a separate bank account for this, as advised.The idea is that Roch will be their employer but the Council will provide most of the funding for their wages. So we need to get to grips with PAYE, employer's liability insurance etc. - happily there will be someone else to help us with this.

So, meanwhile, in response to a letter from Dr. Cable, addressed to the Chief Executive of Hammersmith Council, Roch’s employers have regrouped and written to Roch to defend their position.  The speed with which Dr. Cable responded to Roch’s request for assistance was impressive and we are very grateful to him. It certainly prompted Hammersmith to action.  No less than three letters were hand delivered here last Friday evening (obviously to beat the deadline given for a response). Each one echoed the last, although written by or on behalf of different departments (individuals). I’m sure blood sweat and fear went into those letters as they strove to defend themselves, accusing Roch of not cooperating, refusing to admit that they ignored his requests but managing to patronise him at the same time and finally providing a breakdown of figures that simply covers his basic pension entitlement.  They are such carefully worded letters, quite obviously vetted by their legal department. You would think they were dealing with a high powered legal firm, instead of an employee of 24 years, with a terminal illness. In the letter from the HR department, there was an apology for the three month delay in providing the figures (that was referring to Roch’s latest request, there was no apology for the almost three year delay since his original request, at a time when he had been told he could have as little as two years to live). They actually make me sick. Roch will be well rid of them.  Was there anywhere in any of those letters, an acknowledgement of the thousands upon thousands of pounds Roch has saved the Housing Department over the years? Any thanks for years of dedicated service? You must be joking. Instead they sought to blame him for the fact that because of his absence through illness, the Council is now losing money. Surely this is because they were stupid enough not to train someone up to his level of expertise? They’ve had three years to do it. It’s not as if they didn’t know about his illness. Goodness, he might have died within 14 months and then they wouldn’t have had him for as long as they did.

So, meanwhile, as all this is going on…I am preparing for our trip home. We are off to Dublin in August. Roch and I will stay with my brother at first and the children with my mother, then we travel to Dingle for a week. Back in March, I contacted the Irish MND Association to ask if they could recommend somewhere for us to stay in Dingle – they came back to me with admirable speed, and with a number of suggestions.  Everyone has been so helpful. The woman at Trident Holiday Homes – Geraldine, thank you for all your patient assistance  when I called and asked so many questions about the cottage, Tracy at the Irish MND Association, who is currently trying to organise equipment for us in Kerry and my namesake Deirdre, the supervisor at the holiday cottages. It looks like we’ll be travelling light on the clothes side of things as we have so much gear to bring with us! I am liaising with both Tracy and Jenny, our occupational therapist from Richmond Neuro Rehab. All equipment requested from the Irish MND Association has to go through her.

This will be the first year ever when I will do all the driving. I’m okay with this, although I know it will be tiring. I’ve done the Exeter run a number of times now, a couple of times down and back on the same day. The car journey has always been part of our holiday – and something that the kids enjoy.  We are breaking up our journey and staying at a Premier Inn in Wales along the way. Having learnt from our previous mistake, we have requested that the bed be raised and they have agreed to do this.

Some of Roch’s family will be coming to Dingle for part of our stay. It’s where they spent family holidays as children so hopefully it will be an opportunity for them to revisit happy memories together. Roch is also pleased because it means some of his brothers will be around to help out, giving me and the kids a chance to have a break now and then. We are looking forward to staying in bed until at least 10am every morning and taking things very, very, easy.  No timetables, no ‘must do’ no ‘have to’. Good food and drink, fresh air, lovely scenery (hopefully not obscured by sheets of rain, although I go prepared for this) and the best of company.  I am so pleased both Kate and Tom will be with us, and we are so lucky to also have the wonderful Maura, my sister. Maura will be staying with us – she has often come on our family holidays . In fact, over the years she’s been like a third parent for the kids. Dad, Mum and Maurie. There’s nobody like her.  

Shame on you, Hammersmith & Fulham Council.

So, how about Roch and work? I think an update is in order. Well, he has been on sick leave since 27th April.  Before then, he boasted an exemplary sick leave record, even since diagnosis. He has worked for Hammersmith & Fulham Council for 24 years, first as a Leasing & Acquisitions Officer, then Homelessness Officer, then Team Leader in Homelessness, then Duty Manager in Homelessness and finally, six years as Review Officer. Now they are attempting to force sickness retirement upon him, with no consultation, without answering any of his questions about ill health retirement and the financial package entitlement and with a callous disregard for the effect this might have on someone with a progressive terminal illness.  Happily, Roch is a shop steward and the Chairperson of the Disabled Workers Self Organised Group. He knows his rights, he is articulate, he can still communicate – but they won’t meet him, they haven’t called him, they don’t respond to his emails.  Just how stupid are these people? They really have picked the wrong man to intimidate but just because he’s able to fight his corner doesn’t make it any less reprehensible. We have enlisted the support and assistance of Dr. Vincent Cable, our MP. We hope this will force them to listen. Shame on you Hammersmith & Fulham Council.

Blog entry June 23rd 2012

“This is not the end, it is not even the beginning of the end, but it is perhaps the end of the beginning."

Churchill

So here we are, three years on and so much has changed. From the word go, our strategy has been to maintain normality as much as we could and we succeeded, I think. It was the best approach, especially for the children. But in recent weeks we have had to accept a new approach. Phase one is over now. We have moved on. We are not in the final phase – but we have definitely reached what I would call Phase two. Driving Roch home from the Hospice on a hot, sunny afternoon in May it suddenly occurred to me that the time has come to accept that what was normal family life is gone forever and we need to make some changes. What am I doing, I asked myself? I need to spend more time at home, less time in work and less time worrying about work. I need to get my priorities right. He needs more care now, let’s face it.  His mobility is getting less and less. Once he hated the rollator, now it’s become his best friend.  He uses it to move slowly round downstairs. The sticks are a tool of the past. The electric wheelchair is coming into its own. Transferring from chair to car is more difficult, but do-able. A change is happening in his arms. They are rapidly losing strength, which means he is able to do less and less. I don’t like leaving him alone in the house. He certainly can’t prepare any food for himself. The most he can do is make an espresso and light a cigar (hurray for the Nespresso machine!).

Showering, dressing, washing his teeth – all these daily tasks are either beyond him or exhausting for him. So we have decided to make some changes. From the beginning of July, I go back to shift work. In practice I will work three eight hour shifts in nine days. At the end of my shift, I hand over and leave. More time at home, less stress in work. Less money, but whatever – priorities. We are trying to arrange self-directed care, which would mean the local authority paying for carers who are employed by Roch to look after him when I am in work. You see what I mean by phase two?

A few weeks ago, we made the trip to Exeter to bring Kate back to London for the summer. We decided to make a weekend of it and booked into a Premier Inn for one night. I’m getting used to the drive now. It’s hard for Roch, he loved driving. I had booked a room with disabled facilities. It was on the first floor, but that was okay, because there was a lift. Awkward door from lift lobby into bedroom corridor, as it had to be opened inwards and you had to use a card key, but with some fumbling and manoeuvring with the wheelchair, this was manageable. The room was your average Premier Inn, basic but spotless and the bed looked inviting, if a tad low. Here is where I made my mistake.  We had some doubts about whether Roch would be able to get up from the bed but we decided to be optimistic and hope for the best. What I should have done was ask whether we could have another mattress, or if there was another room with disabled facilities available, with a higher bed. But no!

We spent a pleasant evening with Kate at a local bar/restaurant where the staff were very helpful and provided a ramp to an area where we found space at a table.  I think we both slept well and the lenor bottle came in very handy in the morning, so Roch didn’t need to get out of bed until we were getting up.  The moment of truth. Sitting on the edge of the bed, he tried to stand, to transfer into the wheelchair – but his arms just couldn’t give him the strength. I tried to help, push-me-pull-you antics galore – but we just couldn’t do it. Nothing for it but to ask for help. You might think that’s easy but it ain’t. Once we had him dressed, I called Reception and they sent up a very helpful young man, Anthony – who had been on a ‘moving and handling’ course. Between us, we had him up in no time. Anthony proved invaluable for the rest of our stay – and took good care of us during breakfast and afterwards. Roch was tired and needed to rest for a while and they let us stay beyond normal checking out time. It was a good lesson, especially in advance of our proposed holiday in August.  My list is begun and I am adding to it all the time.