Of men and hobbits

I've been lucky. Richmond Carers Centre offered me twelve weeks' free counselling a while back. I had the last session a couple of weeks ago and I really found it helpful. There has to be someone to listen - not family, not friends - someone you don't have to look after, who will focus on you and take what you say and feel - and make sense of it. Eve did that for me. Roch often tells me, joking, 'It's all about me'. Well, of course it is and that's as it should be but how refreshing to be the focus of attention for a good 50 minutes per session, as I was with Eve. It's a powerful experience, and one that is often underestimated - to be heard, and to have your feelings acknowledged and understood.

I thought I was being so time efficient, arranging my final session for midday - fitting it in before a late shift at work. I was feeling fragile. In fact, to quote a very famous Hobbit, I was feeling 'Sort of stretched, like...butter scraped over too much bread.' The weekend had been all go, my days off full and I hadn't arranged any time for myself - by myself.
Anyway, Roch's personal assistant David arrived - Roch was showered, dressed and ready and so I set off. The first inkling I had that something wasn't quite right with me came as I was parking the car. I watched a woman walk down the street with a confident stride, swinging her bag. She looked - how did she look? She looked happy. Happy and in control. Just about the opposite of how I was feeling, in fact. Whether she was or not, is immaterial.  Suddenly I realised that I was feeling very shaky indeed. My eyes filled and in fact I spent a lot of the subsequent session in tears. Together Eve and I worked out why. Well, it's not rocket science, but sometimes it's hard to work out the why by yourself - and it can feel very scary to feel overwhelmed by strong emotion without quite understanding where it's coming from. Eve helped me to see that I consistently successfully push down all the emotion I'm feeling, in order to cope day to day, so it's not surprising that eventually it all comes bubbling up and I can't stop it from overflowing. Sadness, anger, grief. I have to allow myself to feel it to get through it. If I don't take time for myself, to look after myself - this is what happens. It's not the end of the world, but it does mean that I just have to STOP.
Here I had been rushing around doing everything for everybody for days without stopping for myself and without taking time to get in touch with my feelings (to coin a useful Americanism, now don't laugh). The result was a gibbering wreck. Well, perhaps not gibbering, but certainly unable to function normally. For only the second time since Roch's diagnosis, I knew that I just could not face work. (The first time was the day after we received the diagnosis). 
I called my line manager and tearfully explained. She was very understanding. She asked me if there was anywhere I could go, someone I could be with. But I didn't want to be with anyone.  I didn't want to go home and anyway, I wasn't needed there. Happily it was a bright, sunny autumn day so I donned my sunglasses to hide my red and swollen eyes, took a few deep breaths and headed into Richmond. I felt a bit lost and wandered round rather aimlessly before conceiving the notion to go to the cinema. This idea brightened me up considerably and I had lunch al fresco on Richmond Green, bought some clothes and started to enjoy myself! I felt like I was playing hookey. I had never been to a film alone before and found it very liberating. I chose a film I thought wouldn't interest Roch much (so he wouldn't feel he'd missed out) called 'Hope Springs' about a couple undergoing intensive couples counselling. It was billed as a comedy/drama but I was interested to note that of the audience (which consisted of two middle aged straight couples and a duo of young women - and me) - only the men ever laughed.  That tells its own tale. The film was most enjoyable, by the way.
It was only the other day, when Roch and I were deciding which film to go to next,  that I mentioned my lone cinema visit to him. I think my expression may have been rather hangdog, but I think he was glad I told him, and that I'd had some time to myself.

Roch 'n roll

It's been a bit of a mixed bag lately. On the plus side, we've been getting out more. A successful trip to the cinema in Kingston to see 'Looper' means, I think, that we can look forward to many more. Now that I am working fewer shifts, we can schedule our trips for weekday showings, when it's less busy. Roch has been making a big effort to get out. It's not easy, he's lost a lot of confidence. I was touched by a remark I overheard him make to a friend - he said 'Deirdre's courage gets me out.' I was proud to hear him say that - and it does take courage to get out, but it's so much harder for the guy in the wheelchair. He's making a great effort to get himself out to watch Brentford FC play - he's building up to the Emirates!

Ironically, just as Roch steels himself to face his fears and get out more, something changes. For a while now, it's been difficult for him to stand up from the toilet without someone helping - just one person helping has been fine and I have always been able to assist. But the weekend before last, we had a problem. I couldn't do it alone. It was okay over that weekend, because Tom was at home, so between the two of us, we managed, but what were we to do on Monday? Roch's solution was not to eat anything all morning - well, that clearly wasn't going to work on a long term basis, so we called Shelley, our OT from Richmond on Monday morning and she came out to see us on Monday afternoon. Imagine our relief when she listened to our sorry tale and then simply told us "What you need is a standing hoist." I never thought I'd be happy to hear those words. She had it all organised within two days and we now have another piece of equipment - but what a piece of kit. It has become my new best friend. Me and the Hoist. BFF. Introducing - the Oxford Journey....

Oxford Journey, The compact portable folding Stand Aid

--> The Oxford Journey is a fantastic standing aid and is an essential tool for those who depend on a hoist for their sitting and standing needs.

This new hoist incorporates the latest design technologies to make this one of the most compact and portable, folding stand aids in the market today. It is easy to store and transport as well as maneuver and has an SWL of 24 stone.

Speaking of journeys, we actually made it to a gig on a Saturday night a couple of weeks ago, at the Six Bells in Brentford - despite horrendous service from Com cabs we got there at last (Brentford County Massive waited for us to arrive - thanks guys x) and the return journey wasn't much better. Roch, sitting outside the pub at midnight calling them on his mobile - 'Where the hell is our cab? You said they were five minutes away..!' You get the picture. We got home eventually, but it was a dismal service. However, it didn't spoil our night.



Brentford County Massive groupies Carolyn and Devorah with me in the middle!

 Rob rocks it up

Hammersmith bids farewell

Waiting for his guests to arrive - what's that? Mineral water? Shurely shome mishtake!

The back room of the Egerton pub in Hammersmith was packed last Friday night, crowded with LBHF staff, past and present, Roch's ex-colleagues and friends, Union comrades and some representatives from other organisations - old adversaries included. They had come to pay tribute and to make their farewells. But it wasn't a sad occasion. In fact, it was the best kind of party. Tables groaning with platters of delicious food prepared by a group of his (female) colleagues (a separate table for desserts!), plenty of booze available, and a room brimming with friendship and goodwill. It was, in fact, a typical Roch party. Around us I saw people greeting old friends with delighted hugs - catching up, exchanging news - a buzz of conversation, laughter and memories surrounded us. Roch makes friends like nobody else I know - and never hesitates to bring them together. All are welcome - especially down the pub!

There were speeches from Zahra, Roch's long suffering (and charming) line  manager, Glendine, bravely representing Senior Management, Jonathan Hextall, former Union stalwart - the 'Elder Lemon', who recruited Roch to the Union twenty two years ago and of course, a speech from Roch himself.  There were plenty of jokes about Arsenal, beer and how argumentative Roch can be (what? our Roch? Never!), but the room was silent as Jonathan described Roch as
a Man of Integrity, and went on to say that it was Roch's sense of social justice and his determination to remain impartial, to give everyone a fair hearing, that will be remembered - that and the fact that where Housing Law is concerned, everyone agrees that Roch is an absolute fount of knowledge. No-one to come to now with their questions, I'm afraid. They are gonna miss that.

He is overwhelmed by the generosity of the gifts he received from his LBHF colleagues - a huge sum in vouchers for IT equipment, a most excellent bottle of Prosecco - and a handsome pewter mug, which sports the following engraved message:

Dear Roch

from all your friends

who have loved and

worked with you over

the years at

LBHF

This is not including the individual gifts so many people brought along with them.
I can do no better than share with you some of the photographs from the evening - I hope they convey something of the atmosphere. Roch and I will certainly never forget it.

Special mention goes to Catherine, who managed to elude capture in any photograph (!) and Terry, friend and Union comrade. Catherine, for her quiet behind the scenes management, the production of her legendary Victoria sponge (amongst other culinary delights) and her hard work with the rest of the 'food committee' on the night. Terry - for so many things, but mainly for always being there.


 

With our dear friend Dympna, who did a fantastic job as photographer on the night.




Union Comrades! From left, Jonathan, Terry, Julia and Krissy

Barbara and June

Barbara, June, Catherine, Farah, Shelley, Carolyn, Sheron - thanks for all the delicious food and hard work on the night!

Top picture: From left, Florence, behind Roch - John and April. At the back, Dave and Clive.
Bottom picture: Shauna, Angela, June and Farah.



 

Posing with gifts

An unconventional approach.

As this illness progresses, there are times when it feels like Roch engages less and less with everyday life at home. He is, quite naturally, obsessed with his condition and he admits as much. Why wouldn't he be? His thoughts revolve around what he can no longer do, what he may not be able to do tomorrow. He seldom dwells on the powers that remain to him.
He tells me that he feels helpless, that he's useless, that he sees me doing everything and he can't do anything to help me. This is not how I see him. I tell him that he is not completely helpless yet, that he is a very powerful person. His mood and attitude deeply affect everyone else in the house. He underestimates the power of his presence and opinions. And besides, there are ways in which he can help. He can listen to me when I come to him with a problem, he can enter into a meaningful conversation with me and we can discuss how to manage things together. No, he can't go up to the attic or move boxes, put out the garbage, trim the hedge - but he can use the phone, he can talk, he can use his I-pad and laptop  - if he wants to. I try to involve him in things, not just to make him feel useful but because I NEED him to be involved. I am not ready to take over everything just yet.  We were always a partnership. Actually, I don't think he would want me to take over. So, do household matters seem trivial to him now? Or is he too depressed to take an interest?

I think maybe now that we have Personal Assistants to help, his dependency is harder for him to bear. It's one thing to have your wife carry out intimate tasks to assist you with daily living, quite another for someone from outside to do this. He is still adjusting. One of the contracted tasks is to assist with showering and dressing, but he's not ready for that yet. So he either has no shower on the days when I'm on an early shift or he showers in the evening when I come home and can help. He did suggest that he get up at 6am with me on those days so that I could help him shower before I left for work but I had to be honest with him, it felt like too much for me. That's why we need Personal Assistants, so that on my working days, I don't have to do it. It was hard for me to say no, but I felt that in making the suggestion, he showed very little understanding of my needs. So, I asked myself, is it unreasonable for me to expect this from him?

Before publishing this post, I took the rather unconventional approach of emailing a small questionnaire to Roch. Why? Well, it just felt easier than asking him directly. He is always open to responding to questionnaires from outsiders, seeking to understand his condition and how he is feeling. I was confident that he would respond to mine. The results were interesting and led to a heartfelt discussion, although time will tell whether we reached a mutual understanding of each others' needs. His response to my Question 1 was particularly fascinating as his answer showed me that his disengagement may be caused by feelings of powerlessness, but I also felt that to a certain extent he had missed my point! We talked about that, too.
He told me that he feels like a 'Waste of Space' and I don't think any amount of reassurance from me will change that feeling.  At the end of our discussion we talked about the possibility of counselling for Roch. He is considering this. He admits to being depressed. I'm not sure how I feel after this exercise - I think it was useful for both of us and it felt like something I had to do. I hope it makes a difference.

 With Roch's permission, I record the questions, together with his answers, below:


"I am writing a blog post and wondered if you would mind completing the following short questionnaire?

1) We have talked about how you are obsessed with your illness. We have agreed that this is understandable. So - Do household matters seem trivial to you now?    
Yes/No
⭐ No, Even the smallest task seems monumental now...

2) How do you feel when I ask you about household things like insurance/personal assistants matters? Please tick the most appropriate answer.    

a Irritated - why can't she deal with it by herself?    
b Annoyed - I've got more important problems to worry about.    
c It makes me sad, because I don't feel I can help.    
d I feel too depressed to take an interest.    
e All of the above.

⭐ The answer to this question varies depending on mood, time-of-day, the task I'm currently obsessed with (most particularly my current toilet obsession), my startle response (which appears to me to be getting worse ), my prevailing feeling of helplessness/pending disaster and/or a combination of all of the above. More specifically, probably answer (c).

3) Do you think you might be depressed in general?

⭐ Yes, however, I'd like to point out that I have only come to this realisation today.

4) Do you think that you are angry with life/fate/the universe?

⭐ Absolutely.

5) Do you think it is unreasonable for me as your wife/carer to expect you to understand my needs?

⭐ No, I'd hate to think that this was possibly the case.

Finally,

6) How odd do you find this exercise?

a Very Odd      b Odd c    Not odd at all     d Normal

⭐ Fascinating, but if pushed for a specific choice of the given alternatives; (b)... Albeit very tentatively...."

Oddfellows

The MND Carers Support Group meets on the third Monday of every month, in Richmond Oddfellows Hall. I've talked about it before in the blog, but I think it's worth mentioning again.  Last Monday I was late and was the last to arrive. No sooner had I taken a seat, than Mick had risen from his own to make me a cup of tea. It's like that, very welcoming and distinctly non-threatening. It's still in its infancy - there is no fully formed group, there are new faces there every time, and some familiar ones too, for me. One participant told me she felt like she knew me and my family well - because she had been reading the blog!
Each meeting is facilitated by two volunteers (one of whom is usually Mick Stone, who set up the group). Janis Parks was there on Monday. She is the Chair of the West London & Middlesex Branch of the MNDA. Having them there makes it feel safe.  I was nervous at the beginning because at my very first Open Branch meeting I had felt overwhelmed by the emotional needs of other carers. This was something I fed back at the time and spoke to Mick about, too when he asked me whether I thought a Carer's Group was a good idea.  He assured me that the meetings would be managed and that they would be facilitated by two people. It works for me.
Monday's meeting was held to the background noise of a tap dancing class being held upstairs. It was a little distracting at first, but kind of cheering at the same time. I think we managed to block out the noise eventually. The ballet class afterwards felt less intrusive - a kind of dusty, muffled shuffling. There was something life affirming about holding our support meeting to the sound of people learning to dance. Life's rich tapestry...
Certainly life's rich tapestry was reflected in the experiences of the Carers present. We all had an opportunity to talk about our own situations and how we were feeling. As always, it feels much easier to talk about the people we care for and to ask for suggestions/advice on practical matters from our fellow carers - rather than examine our own feelings and how things are for us as individuals. Maybe it's because we're not used to each other yet? Maybe it feels like that might open up a bit of a Pandora's box and we're not ready for it? I don't know the answer. Time may tell. There was a general acknowledgement of a shared feeling of frustration -of  the difficulties faced when dealing with professionals who don't understand, who dismiss the Carer's input - hospital staff and occupational health therapists alike. An affirmation from people who do know what it's like - fellow carers - that we are all doing the best that we can. Encouragement to continue.

I found it helpful to hear that other Carers sometimes feel irritated by the unceasing demands made on their time - irritated and resentful, even. I share those feelings sometimes. We all agree that breaks are important and that when respite is offered, we should take it. It's hard to be patient all the time.

When Roch was first diagnosed, a close friend confided that what she would find difficult would be not feeling able to shout at her husband when they had a row! I told the group on Monday that we still do shout at each other - like any healthy married couple. I told them the tale of a recent row - during which Roch said to me "Try to think of me sometimes." Or words to that effect. This remark elicited a most satisfying response from my fellow carers, who howled with appreciative laughter, knowing that it would have been impossible for any of us not to respond to such a remark. As I said to them, "Every waking moment..." I didn't even have to finish the sentence. After the row, I went for a walk - Tom was at home with Roch, so I knew he wasn't alone. I was also acutely aware that I was doing something he was unable to do, and I couldn't help feeling bad about that.  I could just up and leave - walk briskly down the road to get some space. Well, as Janis remarked, one of us had to do it.

It's good to know you can sit with people who understand, chat over tea and biscuits and have a break for an hour or two. I left feeling that I had spent an evening with friends. That's a good feeling.

Home sweet home

Well, we have been home for a full week now and whatever holiday glow attended our return has definitely dissipated at this point. Just one day home and he had a fall. It was Sunday and I had gone out to Tesco. He slipped in the wet room. He banged his head, arm and behind - but nothing broken, no major damage. By all accounts, Tom was brilliant but it must have been a shock for everyone (especially Roch).   Roch can just about get himself up from the shower seat (which Tony raised for us before we went to Ireland) but last Sunday his feet just slid out from under him on the wet floor and once down, he cannot get up.  As I left for Tesco, I had a momentary doubt about leaving him. He was just finishing his shower and Tom was on hand to assist. It probably would have happened if I'd been there, but should I have listened to that inner voice of doubt? - After all, he hadn't used our wet room for three weeks. Was I in too much of a hurry to get out and back with the food for dinner? On the other hand, what kind of faith would it have shown in Tom, to insist on staying? Neither of us could have prevented it from happening. Tom and Kate did all the right things and with the help of Kate's boyfriend, they managed to help Roch up, so they didn't need to call an ambulance. We have since tried a non-slip bathmat but it doesn't work really, not on that floor. We've been using a towel/mat which is better and Roch ordered some crocs to wear in there in future.

He can 'just about' do a number of things and I think we're both wondering how long this stage will continue, which may be a gloomy thought, but natural I think. It's great that he can still do things for himself, but it's hard to feel grateful sometimes for these feeble abilities, although no doubt when they disappear I will look back with nostalgia and longing to the days when he could 'just about' do something.

He has to adjust to retirement now, too. We both do. He is officially retired from work, although very unhappy about how this was managed by his employers. I don't think they've heard the last of it. Dr. Cable has written to the Chief Executive of Hammersmith & Fulham Council once more, on Roch's behalf.

We are entering another phase - a real milestone - where we will employ other people as personal assistants, to be at home with Roch and help him out whilst I am at work. Two of our friends will take on this role, which we hope will begin on 10th September. This is when my new shift pattern will start. We have been advised in this by Paula, of RUILS http://www.ruils.co.uk/ which provides an invaluable advice and support service, making the whole employment process much easier for us to embark upon. There's a lot to think about.

Over the next week we will draft a job description to reflect the support plan already agreed, a contract for each, organise insurance and activate the direct payments scheme. It feels a bit daunting, but once we get down to business, it will feel good to have everything organised. I hope it will set my mind at rest when I'm at work.  I hope having friends as personal assistants will make the adjustment easier for Roch.

Final notes from travel diary

20th August, Monday.

"Gerruup-ouravit'!"* Ah the dulcet tones of the Dublin pedestrian as he aims a passing kick at a car, whose driver has had the bad judgment to break the lights at the quays at O'Connell Bridge, finding himself suddenly surrounded by a menacing crowd. Dublin, in the rare 'oul times.  Roch and I are negotiating the still familiar city centre streets, having braved the Luas (tram line) to Abbey Street from the Gibson Hotel, where we are booked in for the remainder of our stay in Ireland, when we witness this scene, much to our private amusement.  I was worried about using the tram but it posed no problem - it's at pavement level so wheeling the chair on and off is easy and you're straight onto the street, no steps to negotiate.

http://www.hotels.com/ho349785/the-gibson-hotel-dublin-ireland/    



Roch at the Gibson

It's just the kind of hotel Roch likes, sleek, modern and with an understated luxury. I sound like a travel brochure! It's the ideal venue for us, as it's situated smack bang between Northside and Southside, making it convenient for visiting family and friends, from both sides of the Liffey. The idea is that they can come to see us here - which makes it far less stressful for both of us. Before we went to Kerry, we made sure the hotel facilities suited - we had to check the height of the bed, the bathroom/toilet etc. It checked out, and the hotel staff could not have been more helpful. We still have to use the trusty toilet raiser seat, but the bed is high enough and we don't need the toilet frame as the grab rails provided are sufficient. We do need the perching stool, as the shower seat is too low, but we expected that.
The bedroom is an oasis of quiet and calm and on our return to the room - even after a relatively short visit to the bar/terrrace for coffee and cigar - it has been transformed in our absence, bed made, bathroom spotless. Now that's luxury.

Many thanks to Fiona, who thought of the Gibson in the first place, Maura who accompanied her on the first reconaissance mission - and to my mother, who gave us our stay there for our 22nd Wedding Anniversary present.

*Translation from Dublinese = Get up out of it.

21st August, Tuesday

The Gathering of the Clan

I guess you could call this the gathering of the clan of cousins, as we had another Maher gathering for breakfast on Sunday, at Mairt's house. There sisters, brothers and various offspring came together before those lucky enough to have tickets to the All Ireland Hurling semi-final headed off to Croke Park for the match, Roch, Tom and Kate amongst them. Today Roch and his brothers and sisters travelled to meet their cousins - presiding over them all, the man who married us - Roch's uncle and namesake, Fr. Roch. It's becoming an annual tradition, this year kindly hosted by Anne and Chris.

Roch with Fr. Roch and Eoin