Jenny gets things done

We had a visit a couple of weeks ago from Jenny, one of the occupational therapists at Richmond Neuro Rehab. I was glad I was at home because we talked about a lot of things. I had only met Jenny once before - Roch has had a series of OTs from Richmond Neuro Rehab (the wonderful Rachel is a Constant - she is the OT from the Council). Jenny is the latest OT from RNR and there is something about her manner I find very comforting. She is matter of fact and I can see that she is someone we can trust to get things done. We talked about a new chair for Roch (she and Rachel were to liaise on this one) as he is having difficulty getting up by himself from his lovely leather chair. We talked about aids for eating i.e. lifting the food up to his mouth (no problems with swallowing). Rachel has supplied us with a selection of specially adapted cutlery to try and our good friend Lerick (hello Lerick, I know you read this!) sent some excellent lightweight cutlery.
Jenny brought a new offering with her. A strange looking contraption called a 'STEADY/SPOON' with a rather outdated descriptive tag line on its box:

Doctors and Occupational Therapists Agree

The SteadySpoon is;

'One of The Most Innovative and Revolutionary

Advancements in the Care and Feeding of the

Handicapped, Disabled,

Challenged or aged Individuals, Ever!'

It's an interesting contraption, a spoon which is attached to the wrist with a velcro fastening strap. As the spoon moves towards the 'challenged' individual's mouth, the food is tipped out, hopefully into the aforementioned mouth. However, the SteadySpoon has been consigned to the cupboard. It's not working for us - certainly not to be attempted with soup! We didn't dare.

Other topics of conversation with Jenny included arm supports, cigar holders and environmental controls. She and I also discussed how Roch manages for lunch when I am at work and I expressed some concern about him lifting and transferring hot dishes from microwave to table. So she promised to look into providing a kind of 'hostess' trolley for him. I'm not sure how Roch feels about this, but it sounds like a good idea to me.

It's becoming a real team effort - Jenny and Rachel, Amber (physio), Jo (Community Matron), Donna (Hospice Nurse) - these people are some of the members of Team Roch...there are others.

Anyway, today two items arrived (I told you Jenny gets things done).  Firstly, an absolutely delightful duo arrived this afternoon with his new chair. Pat and Les, who deliver items for the MND Association. Well, they couldn't have been sweeter. The chair looks as if it has always been in the tv room. It fits in perfectly with our colour scheme! We just hoped, Pat and I, that it was the right size as it may be a little small. So no more struggling out of the leather chair (last night it took the combined efforts of me and Tom to get him up), now his motorised chair at the push of a button will gently raise him to a standing position. If there is a problem with it, Pat assures me that they can change it. Many thanks to the MND Association, to both Jenny and Rachel and the lovely Pat and Les. And here it is:

There you can see Roch's leather chair set to one side. You can also see why this part of the house is now the tv room, as guess what's on the wall opposite? Judge Judy awaits...

I have a feeling the leather chair will become Tom's chair now. He won't complain about that.




The second item to arrive was the 'hostess' trolley. I don't know what he'll make of that. It definitely looks pretty 'old people's home'. Well, if it does the job I guess that's the main thing.

Preparations have begun today for Roch's trip to Dublin - a series of my famous lists lie scattered on the kitchen table and the house looks like a laundry. He's off on Friday morning and back on Monday night. Once he has left home in the capable hands of his cousin Tony, I look forward to a few days spent here with my faithful sister Maura, doing what we do best - talking, drinking tea and shopping (throw in a bit of 'Strictly Come Dancing' for good measure). Bliss. But before then, Roch and I have an appointment on Thursday at King's College Hospital with Professor Al-Chalabi.  A long drive across town, but always worth it in the end. I'll let you know how that goes.

Two jobs done in one day - and more to think about

Yesterday was a red letter day for us! At long last, we now have a 'disabled' parking bay right outside the house. It took a while, but boy do we need it. Initially we were told to apply for it only when it really became necessary, otherwise our application could be refused. Well, that made sense. So we wait until it reaches the stage when parking any further away than right outside the house is really out of the question. We apply for the bay. Then they tell us it will take six months before the process will be complete! However, I have to say that having explained our situation, they did agree that they could probably speed things up a bit - that was a number of weeks ago but today, it happened.  It took them all of about fifteen minutes to organise. Impressive.

 Later, Roy from 'Medequip' arrived with the bed raisers (custom-made). What a great job. I thought they'd be unsightly and, although useful, present an ugly reminder of yet another adaptation to meet a further deterioration in Roch's physical condition. But no! They are wooden and Roy actually went to the bother of using a dark woodstain to match our wooden floor. The raisers are fixed to the floor and the legs of the bed rest inside them, bringing the height of the bed up to a more comfortable level for Roch to sit down and to and raise himself to a standing position. You would hardly notice them, and when you do, they look quite attractive. Thank you Roy, a true craftsman. Thank you Rachel, for organising it. Only thing is, it's more difficult now for him to put his shoes on when he's sitting on the bed. Ah well, you can't have everything...

Today wasn't so good. I was out and he was alone.  He was in the bathroom at the sink and his left leg went from under him. He managed to land with his throat somehow supported by the edge of the sink - but as this position was clearly going to end up choking him, he let himself fall backwards, happily missing any sharp edges. He rested for a while, then slid his way out of the bathroom along the smooth floor of our hallway to the bottom of the stairs, where he managed to bring himself to a standing position. Quite an adventure. By the time I heard about it, he had recovered from the shock and mercifully hadn't injured himself. I imagine he must have been quite shaken. I called to check in with him after his fall but he didn't tell me what had happened in case 'it spoiled my afternoon'.  Well, yes but...
Good thing we agreed that he should never lock the bathroom door. Should we be thinking about one of those alarms people carry around? Time to talk about strategies.

A different stress is as good as a rest?

Not sure I should adopt the above as a personal maxim but it feels like it might just have adopted me! As you may know, I started a new post in work three months ago and it's been a stressful time.  I feel like I'm getting to grips with it now. But there's so much to do in three days!! I can honestly say that at work I really don't think about things at home at all. There just isn't time. Then home I come for my 'days off'. I love those days and especially at this time of year, when I can enjoy the garden with its autumn colours and scents - that crisp smoky air.  A time of pumpkin soup and crunchy apples!

Last Friday at work I felt on top of things and buzzed through my 'to-do' list, but stayed late to do it. Friday is a good day to stay late at work as Roch goes into work on a Friday and out for a few bevies afterwards with his mates. But by the time I made it home I was a lifeless shadow of my usual self and took to my bed with the stirrings of a migraine, leaving the lads to Chinese takeaway...

It meant that although on Saturday I woke blessedly free of headache after a long undisturbed sleep, I was weary and under par for the next two days.  I didn't feel quite as on top of things at home - not the way I like it. So, clearly haven't got the balance right yet.

A good night out

Here we are last night at the Dublin Castle in Camden. How long since we've been to a 'gig'? I really can't remember. In the last two weeks, we've managed one party and a gig in Camden. I'm really proud of us. Bit of a mammoth journey yesterday and we hit so much traffic on the way it was unbelievable. But we got there in the end.

People are amazing. When we arrived, Roch in the wheelchair, we faced a couple of steps into the building. But I've learned that you can rely on the kindness of strangers and if you ask, people are happy to help. Roch can still stand, he just can't lift his feet very well, so he put his arms around two strong young lads who, with the greatest of respect and good humour, assisted him inside. Once in the venue room, we were greeted warmly by Sonja (glamorous in green above), James, Kate and John G. I felt at home at once. The lovely Carolyn had journeyed with us (many thanks for all the encouragement as I negotiated the traffic Carolyn) and we had such a good time together. It proved to us that we can do it. We can still get out and have fun. We were there to hear the Deaf Offenders play (Deaf Offender Terry also in the pic above (I'm wearing his hat), but sadly missed most of their act (Goddarn it!). We stayed for the next band and for a time after that - but unfortunately the Dublin Castle let us down, as the toilets were downstairs, down lots of stairs in fact - so we left early, having kept a weather eye on the liquid consumption. The trusty Lenor bottle came in handy yet again as we drove down the Westway into Shepherd's Bush. How handy was that? 

It was like old times when we got home. Post-gig pangs of hunger hit and we headed out again for a kebab (Roch) and burger (me)! That's what I call a good night out.  

Thank you!

I was feeling positive today, as recently Roch and I have been able to get out and do things - get out and enjoy life a bit and my post was going to be pretty much about that and about where we went and what we did - and I'll still talk about that, but maybe in a separate post. Because I have to say first how absolutely overwhelmed I'm feeling just now. I haven't blogged for over a week - I haven't even checked my blog in over a week. I go in today and I have 19 followers and six new comments! I was pleased with the feature in Thumbprint (the MND Association quarterly magazine ) and of course I was aware that people would read about us. Truth to tell, I was feeling a bit bashful about it all. Thank you, thank you to everyone who left a comment. I feel proud to be counted among you, those who are caring for loved ones with MND. Thank you for sharing your feelings and talking about your lives and your loved ones and what it's like for you - and for giving me some really useful advice and tips (Eileen - what a relief to know there is help when migraine strikes, I can't tell you...) Alison, Sue, Mike and Helen - I feel like I've made so many new friends!

Like I say, today started out as a good day and I was feeling pretty positive, but meeting all of you has given me extra strength. I may have quoted her before, but my mother says 'There's nothing good about mnd' and she's right, of course, but out of bad things, can come good. You've all made me feel good today, despite mnd.

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.

Clean him out and get him out!

So last week we had a visit from the Roehampton Wheelchair Service. If Roch passes his driving test (!) he will have a motorised wheelchair. This is great news. The idea is that Roch will then be able to venture out alone (but just locally, as we won't be able to put this wheelchair in the car). I think this will be daunting for him at first but I hope it will mean he will feel a little less dependent. His sister Laura and her husband Dan came to visit last week, too. She told me that she found Roch better than she expected, but was startled to realise that he really cannot leave the house alone. She said she hadn't thought about it, but found it sad that he can't just pop out for the paper or a pint of milk any more. Maybe, when he gets used to the motorised wheelchair, he'll feel able to do this. I hope so.

We attended an appointment this week which Roch had been dreading. If I tell you that it was at the Bladder and Bowel Clinic at Teddington Memorial Hospital, you'll understand why. You'll know from previous posts that Roch has had problems on and off for over a year with sudden bouts of bowel urgency. It's a huge anxiety for him and actually prevents him from going out at times. There's a real fear that it will come upon him in public and he won't make it to a toilet on time. His mobility is so much less and it's more difficult for him to undo his trousers quickly (this is a separate issue which we are looking at, too). The GP prescribed imodium but he can't keep taking this all the time. So an appointment was arranged with an Continence nurse. When we arrived at the hospital, we approached the Receptionist on the ground floor and had a classic sitcom moment - we asked her where we would find the 'Bladder and Bowel Clinic' and of course she didn't hear what we said so we had to repeat it, loudly! Somewhat abashed, we followed her instructions to find the lift and found ourselves alone on the First Floor with no visible sign to direct us. I left him in the waiting area and went exploring. There was a sign along the corridor at the top of the stairs, so any able bodied person looking for the clinic, who had reached the First Floor by using the stairs would know where to go. But there was no sign outside the lift. We waited and eventually the Continence Nurse came to us.

Beforehand I knew him to be anxious, embarrassed and braced to feel shamed but none of his fears were realised. To Tiz, the nurse in question, I'm sure it was all in a day's work. For us, she was a miracle. We spent a long time with her and she was professional, matter of fact and understanding. It was easy to trust her. We had an interesting conversation about how in this country everyone is embarrassed by the word 'bottom' and she can't understand it. She's Italian and she says that in Italy, it's viewed simply as part of the anatomy and bowel movements are a fact of life. So refreshing. No need for any embarrassment.

Now we have several strategies to pursue in turn, beginning with attempting to initiate a routine so that Roch can control bowel movement using suppositories and diet. We start with glycerine suppositories for two weeks, and then use more powerful laxative suppositories if they don't work. We will do that for a month. The idea is to plan bowel movements so that they are over and done with in advance of any major outing. While we still can, we have to get our lives back so that we can do things, get out, get away. What a shame that what is preventing us so often is not motor neurone disease itself, which will eventually take away any choice about going anywhere, but this bowel movement problem. It's presence is due probably to a number of factors, including medication but is definitely exacerbated by Roch's anxiety around the issue.

Tiz is mindful of Roch's dignity. Pads were mentioned as a last resort and we hope it won't come to that. This was an eventuality he had sadly considered himself. When I saw 'nappies' on his list of questions to ask, I was aghast. This, surely is not what he will be reduced to - not at this point, at least. But Tiz is going to do her best to make sure this won't be a necessary option and we will work hard with her on it.

If the new regime doesn't work, we will be instructed in the art of Anal Irrigation!! Basically, clean him out and get him out! We'll try anything to make sure we can enjoy life while we can.