Out and About

Selfie!

Despite the fact that Roch tires easily now, we have managed to get out and about over the last couple of months.  It felt like quite an achievement when we made it to witness James marrying his beautiful Sabrina in September. Roch looked dashing and it was an excuse for me to dress up and get the hair done. We were both looking forward to such a special occasion but for me it was just vital to make sure Roch made it. I knew how good it would feel for him to be a part of that day. So when I woke on the morning with a stinking headache, my heart sank. Not a good start. But hey we took it slowly and got ourselves all dolled up, well I got ourselves all dolled up...and we left plenty of time for the drive to Stoke Newington.  The headache nagged away all day but never crossed into migraine territory and we managed to stay until just before the dancing started. Roch was okay with leaving then and we reached home without incident, in a rosy glow of triumph. May I just say for the record that we wouldn't have had such a stress free time without Terry's help (not to mention the pleasure of his company).

There’s always some difficulty to overcome – some disaster to be averted. But that’s just it, the difficulty is always overcome and the disaster is always averted and every time it happens, it just proves that it was worth the effort made.
Take James and Sabrina’s wedding – all went well, and with the beautiful ceremony over (not a dry eye in the house) we headed out of the council chamber to take the lift back down to the ground floor. Unfortunately it wouldn’t budge! Without the lift it meant that Roch was effectively stuck several floors up with no way to exit the building in his chair. So we just had to wait until it was fixed.

So we did, and to be fair, it didn’t take them too long. But it does go to show how vulnerable wheelchair users can be to the vagaries of machinery. It didn’t feel good to watch everyone trot downstairs ahead of us. But the rest of the day passed without incident. Although there were steps into the pub where the Reception was held, by means of brute strength, and the combined efforts of the manager and the redoubtable Terry, the wheelchair with its precious cargo was lifted inside. All good. After an absolutely delicious meal, the only thing to mar the day was the best man’s speech, but the less said about that, the better!

All dolled up

Roch with Terry

 

You know, people generally come up trumps and this was proved to us again when recently, we encountered a problem at Kew Gardens. Kew has always been special for us and we picked a gorgeous day in mid-October to visit. It’s my favourite time of year and to be surrounded by the lights, the colours, the scents of Autumn in such a wonderful setting – well, it lifted my spirits.

Towards the end of the day Roch had to use the toilet. Now this is the thing he dreads when he is out and the reason why it’s difficult to arrange outings without a second helper. I don’t know about you, but we find that in public disabled facilities, the toilets are very low.  Possibly this helps some disabled people, but not Roch. The height of the toilets, combined with the diminished strength in his arms, means that he cannot stand up without assistance. I am not strong enough to lift him by myself (at home I use the hoist) and Kew’s disabled toilet facilities proved no different. So there it was, the moment he had dreaded. Stuck on a public toilet. There was no help for it, we had to pull the emergency chord. This could have been a moment of crippling indignity. However, a knock on the door brought the friendly and capable Jan to our rescue. She asked how she could help and Roch directed operations. Between us, Jan and I helped him to his feet.  Jan followed instructions, held on firmly, offering assistance with such respect, that she transformed the incident into a mere blip on the radar.  Gold star for Kew then – also just to mention that there are ramps into the exhibitions and level access to the main restaurant and shop. Disabled adults £14.50 with essential Carer admitted free.

As I say, he gets very tired and no longer objects to early bedtimes. However, we’ve both noticed a difference in his energy levels when he’s had the nippy on for a few hours. So the new routine includes nippy for a few hours every day. He’s still not keen to use it at night time but we’ll come to that, no doubt. We’ve been to a few more Brentford matches – that’s becoming more of a routine, with a few pints afterwards to round off the trip. As long as we can make it home for Strictly Come Dancing, I’m happy. (It’s called give and take, people…)

Is Everybody Happy? Then let Everybody Sing...

Years ago, when my siblings and I were teenagers, my mother sought to shield my father from our whining and complaints at the end of the day (or perhaps it was just from my whining and complaints…!) I think she felt he had a right to a bit of peace when he came home, at least until after dinner. I remember on occasions, home from school, presenting her with some problem, some upset from my day and she would listen. But if we were talking about it and his key was heard in the door, she would raise a finger to her lips and say, "Is everybody happy, then let everybody sing..."

This was my cue to shut up and present a happy smiling face and at least wait until after dinner to approach him, if ever. It was her way of protecting him, of setting the mood for a pleasant evening and I suppose, of making sure that he looked forward to coming home. He did like us all to be happy. But the reality was that we weren't always happy and it did sometimes make me feel like my feelings weren't so important.

I’ve been thinking about that recently. I’ve been thinking about how carers who are also spouses/partners/children sometimes have to put on the happy face to lift the mood of their loved one who is living with MND. It can feel difficult, it can feel like too much - a burden in itself, and it can make us feel like our feelings have to be hidden.

Don't you find, as a carer, that your mood sets the tone for the day? I remember one MND carer who told me how she made it her business to make her husband laugh before the first loo visit in the morning. I thought that was wonderful. I've probably mentioned it before. Her husband is dead now and I bet she's really glad that she was able to do that for him. That's real caring. I'm lucky if I can crack a smile myself before the first loo visit in the morning, never mind make Roch laugh. Here's the thing. If I'm feeling down, he feels down. The gloomier I get, the more he feels like a burden. I feel like I have no choice, I have to raise my game and set the mood. Sometimes it requires little or no effort, but sometimes it's a real struggle. I mean, carers have feelings too - right? Our feelings are important and we must be allowed to feel bad sometimes. But it's not too much to say that the carer has to maintain a certain level of positivity and cheeriness (as my mother felt she had to do, for her own reasons) in order to prove to their charge that they are not a burden. 

So I’ve realised that my mood is key. When I manage to get organised, make a joke, be cheery and positive, get us out for a trip somewhere - of course he feels better. It helps him to feel that life is still worth living. I do manage to do that, by the way - but it's definitely getting harder. Sure, I can talk to him about how I’m feeling, but it isn’t going to help him much to know I feel like shit. That’s hardly going to lift the mood for the day now, is it?

It hasn't been such a problem before so what has changed? Well, here's the thing. We've talked about this, he and I. It's been four years now and I guess it’s getting me down.  I don't want to jump the gun but it looks like we're in for the long haul (in MND terms, that is). More and more it looks like this is going to be our life together, perhaps for years to come.

He's getting worse, but slowly and yes, that's a good thing. But if we're in it for the long haul, I need to find a way to live this life without sinking into depression. Sorry but I've got to be honest about this. For his sake and for mine, I need to find a way to be happier in our life together, living with MND. We both deserve to be as happy as we can be in the circumstances. I have to find the strength from somewhere to carry us along, to have the emotional energy not just to look after him, but to make our life together worth living, for both of us. So what can I do to make myself feel better? There are times when I ask myself if I should perhaps be on anti-depressants? I know many carers are and it can be the answer.  Maybe, before the end, I'll have to be on anti –depressants but it seems early days to me. I don't want to go down that road just yet. So I have asked myself some questions.

I started out by asking this one:

Q. What makes me feel good?

A. Lots of things - a good book, the smell of freshly cut grass, a walk through Autumn leaves, crisp white sheets, being out in the fresh air, Strictly Come Dancing, a good box set, a twix bar with a cup of tea...Yes, yes, okay.  Stop now, that's all very well - so those are things I enjoy, but they are quick fixes and they don't last long (especially the twix bar and the cup of tea).  

So, I asked myself another question:

Q. What might help me in the longer term?

A. Meditation – well, I’ve tried it, I’m pretty hopeless but I can try again. Counselling. Yes, I do still go to my Counsellor (probably not often enough). Support from other sources, like the local MND group or the MND Carers group. Yes, although it’s not always possible to make the meetings and although it’s always worth going, and helps at the time, it doesn’t see me through in between.

So then a better question occurred to me, and here’s where I think I’ve made a breakthrough:

Q. What makes me feel good about myself?

A. Writing.

Want to know the last time I wrote anything or even tried to write anything? Well, I can't tell you because I don't remember and that makes me feel like shit.

Yesterday, I read an interesting blog post by a writer/blogger, who argues persuasively that being sad blocks creativity. Yes, he says, many successful writers have created from their own sad place in the world but, he says, sadness also blocks creativity. When we are sad or depressed, we start things, but we don't finish them, when we are low we don't have sufficient belief in ourselves to see the creative process through. I think he's right. In fact, I know he is.

I've said before that my default position is sadness. Well, that's not going to change, but I can take steps to help myself to raise my mood. I feel sad (bleats "...my husband has MND and life is so shit...") and so I don't write. I don't write so I still feel sad but now I feel bad about myself, and that makes me feel worse. So - I have made some new rules:

1. Get up earlier on my days off.

2. Back to my 'morning pages' and keeping a journal.

3. Write for an hour on every day off.

4. Write for half an hour on work days.

I hope that I will be a happier carer - a happier person if I can do some writing.  Maybe I'll discover that I need anti-depressants anyway. Maybe I'll find that I need them to get myself out of bed in the mornings to do some writing. If I do, I'll let you know. I hope that by doing this thing for myself, it will make a difference to the quality of our life together. I need to remind myself that being a carer is only a part of who I am.

All you MND carers out there - how do you do it? How do you stay positive for your MND partner?Do you feel it's up to you to set the mood for the day? Really, I'd love to know.

Q. What makes you feel good about yourself?

 

 

 

Do's and Don'ts for Neurologists

We recently attended a neurology appointment at the West Middlesex Hospital. Jenny came with us. The ‘West Mid’, as most people call it, still has the power to inspire fear in Roch and in me, on his behalf. Almost three years on from the death there of our friend, Gerry McDonagh (see blog post passim 03/11/10), Roch’s anxiety about being admitted to the West Mid persists. With each visit, we seek reassurance. Has the standard of nursing care for MND patients improved? Following Gerry's death, we had been told that an information leaflet about MND and the needs of MND patients was being prepared for nursing staff and at each of our visits we have enquired about this. The doctor we see there never has any answers.

Predictably, after our appointment we were no wiser and no less anxious about possible admission. Let me be clear - we are not talking about palliative care, as such. We are talking about basic nursing care. Gerry did not need palliative care on admission on a Friday, but he needed it by the end of the weekend because he did not receive the proper nursing care when he was admitted.

Roch calls it ‘Death by Hospital’.

As a result of our visit, I have prepared a list of ‘Do’s’ and ‘Don’ts’ for neurologists.

From this, you will gain a pretty accurate picture of how our consultation went.

 

Basic Do’s and Don’ts for Neurologists:

Don’t:

Interrupt your patient

Tell your MND patient that there are worse diseases to have.

Tell your MND patient that it would be worse to have bulbar symptoms first.
Tell your MND patient to ‘stay positive’.
Tell your MND patient that you might die before them.
Tell your MND patient that you have anxieties too.
Diminish your patient’s experience of their illness.
Tell your patient you have no power to change things.

 

Do’s:

 

Listen.
Acknowledge their fears.
Tell them you will do what you can to change things.
Do what you can to change things. For instance:

• Find out how you can ensure your MND patient will not die needlessly, due to inadequate nursing care at your hospital.
• Take action to start to change things.
• Get back to your patient to let him know what you have done.  

It’s not rocket science.

 

POSTSCRIPT:


Following the appointment Roch entered into email correspondence with Dr. Pearce, Consultant Neurologist at the West Mid, who has now sent us a copy of the information leaflet around the care of MND patients, prepared for nursing staff. Apparently this leaflet has been in existence for the last two years. As the doctor we spoke to was unaware of its existence, I suggest that Dr. Pearce lose no time in sharing it with the rest of his team.

We are, on the whole, pleased with Dr. Pearce's speedy response and it has gone some way towards alleviating our fears although we remain anxious.

He also drew Roch's attention to the CMC database:

"There is now a national data base for patients with life-limiting conditions known as Coordinate My Care (CMC).  You are eligible to join the registry (and I would urge you to do so) and this will alert care givers down to an ambulance level, so that all parties are informed, as much as possible, of your individual circumstances and preferences."

                                                  http://www.coordinatemycare.co.uk/
So we need to make sure Roch is registered on this database (and hope it functions as it is designed to do), that he is happy with his End of Life Directive and that the hospital and GP have copies of this on file. I can't say I'm filled with confidence.
I do know I have strong, supportive professionals on side, like Donna, our Hospice Nurse and Jenny, Roch's new PA but as his wife and main Carer I anticipate that it will be me in an emergency situation standing between the nursing and medical staff and my husband. Funny to put it like that, but that's how I see it at the moment - a 'them' and 'us' situation. That's not good. I clearly need more reassurance.

I do not want to be in a situation where a remark like "Wife claims husband has MND" appears on Roch's admission notes. True story.
 

 

 

 

 

Holiday snaps

Summer 2013

Shopping

Family Time in the garden

Richmond Green picnic

Look Out Kavos!

A Venezia...



                                                  And there was the  Graduation

Proud father






O'Neill's in Dublin "Mine's a pint, Dad..."

Bushy Park Walk in July



Football season begins...

"Come on the Bees!"



Post Holiday Blues

Roch is back in the Hospice for a respite stay. He wasn't looking forward to it, but the Princess Alice is such a lovely place and they do take such good care of him. Tom and I spent the afternoon there with him yesterday to help him settle in. Kate is in Spain for a week (booked before she knew the Hospice dates).

The last few weeks, since our return from Dublin, have been up and down for me. For both of us. We've had more than a touch of the ‘home from holiday’ blues. Maybe a week's respite will help.

It's been difficult, adjusting to the home routine again.

 

Picture the scene: A kitchen in West London. Mid- morning in late summer…

Man in  wheelchair, looking up from his I-Pad: “What are we up to today?”

Dejected looking woman at the kitchen table, listlessly turning the pages of last Saturday’s newspaper: “Nothing planned.”

“Oh,” man in wheelchair replies, “Back to slowly dying again then.”

 “I guess so,” she replies, stares out the window for a moment, then goes back to the newspaper.

 You get the picture.

We’re managing to drag ourselves out of it, but it’s hard. A new phase is beginning for the family. Back to reality after our holiday. Kate home from university, finding her feet again, Tom preparing to leave for his time away. We have a lot to be thankful for, I do know that, but sometimes when I watch Roch struggle to eat, when I winch him up from the toilet seat or the shower chair, when I look at him in his recliner, bony ankles sticking out, breathing through the nippy machine and trying at the same time to sip from a straw in his beer can, held to his lips by one of his children, it’s hard to feel that we’re lucky.

When I got back from the Hospice yesterday I felt stressed and sad. It cheered me to read a text from a neighbour, who wondered how I was feeling, home from dropping 'hubby' off to the Hospice. I was honest and told her that I felt stressed and sad, and she sent me some good night hugs. That meant a lot. Little things really help.
So what are the plans for the week? Well, today I was working. Yes, I know but I don't have enough annual leave left to take time this week. I have managed to swap two shifts, however. So I have the rest of the week off. I am beginning to regret arranging for work to be done in the house while he and Kate are away - but it was difficult to think of a better time. It'll be worth it, even though it means it won't be too peaceful around here for a few days. Can't sleep on, but plenty of early nights on the cards. Get this, I set my alarm for six today and slept right through it! Woke up at 7.31am. That has never happened to me since I began working for Missing People. Mad dash to work but what a great sleep! Uninterrupted. I am such a light sleeper and lately I've been waking early, even on my days off, and just getting up because I can't get back to sleep. I've gone back to filling my days with chores (believe me, there are plenty). Is this because my mind at rest can't block out unwelcome thoughts? Roch is often wakeful and I drift in and out of sleep. Sometimes he needs me to help him get out of bed, but not always. I don't feel my sleep is always restful. I feel 'on alert'. 
Having said that, bedtime is quite definitely our favourite time of day. Roch says that when we go to bed, he feels 'normal'. The DVD box-set currently on the go is 'The Sopranos' and most nights I tuck us in and we watch an episode before reading for a while. 

Anyway, tomorrow I'm all set for a real treat. A pedicure. There's luxury. I am not going to fill my day with chores. I am going to treat myself. I'll let you know how I get on...

A Change in Personnel

We were sorry to have to say goodbye to one of Roch’s PAs, Christian.  This is due in part to Roch’s increasing medical needs and in part to Christian’s ill health earlier this summer, which meant we had to seek a substitute perhaps sooner than anticipated. Having Christian on Roch’s team for the past year (yes, it is a year now) has meant that I have been able to continue to work part time and his punctuality, reliability – not to mention his availability at short notice – has given me extra free time and Roch companionship and help on numerous occasions. Christian stays in our lives as our dear friend and neighbour. We will always be grateful for his cheering and positive presence.

 

It was during my trip to Venice when Christian first became ill. At that time, Roch’s brothers were here to help in my absence but we were fortunate that by the time they returned to Dublin, the wonderful Mandy Garnett had come to our rescue. It was Mandy who brought Jenny into our lives.

Jenny is Roch’s new PA and I regard her as a Gift from God. No, Jenny, I will not spare your blushes. It’s not just that she is a nurse so that at one stroke all concern about dealing with medical needs disappears…or that she is capable, young, strong, learns fast…or that she is an excellent companion for Roch (she doesn’t take any nonsense), down to earth about the practical stuff and also sensitive to his feelings…or that she has a sense of humour and a sunny nature…or that she insists on going the extra mile to help me out with shopping, cooking, putting out the recycling, bringing in the washing…seeing to little tasks while I am at work. No, it’s because in an amazingly short space of time, Jenny has become part of our family. For the kids, she’s like a big sister, for me, an understanding friend. I know what you’re thinking. Nobody is that perfect. Well, maybe Jenny’s not perfect (I’ll let you know) but the important thing is, she is perfect for us.

A Busy August

The Trip Home


Members of the Maher Clan and friends gather at Mairt's house 

It’s been a busy August and I guess you could call it successful on most counts. Since we spoke last, we’ve been to Dublin and back, Tom has been accepted to Southampton University (loud cheers and clapping – ‘For he’s a jolly good fellow’…etc.) and we’ve had a change in personnel here. We also celebrated our 23^rd Wedding Anniversary by attending a League One football match!

Now if you’d said to me on my Wedding Day that for my 23^rd Wedding anniversary I’d be going to a local football match, I would have said ‘Forget the whole thing.’ But you know what? I had a good time. How things change in 23 years.

The Dublin trip went well, with everything slotting perfectly into place. The Irish MND Association came up trumps again. Back at the planning stages, I called our contact there, Tracy, to arrange for equipment loan (this year we needed more help than last, predictably). She it was who suggested I contact Muscular Dystrophy Ireland to enquire about the availability of their specially adapted apartment in Dublin’s pretty Chapelizod area. Unbelievably, they had a room with PA room attached vacant for seven nights in early August. They ask a nominal fee per night, per room. Each room is equipped with ceiling hoists, profiling beds and ensuite wet room. They do their best to make the rooms less ‘hospital’ and more ‘holiday’. The lift can be operated by a wheelchair user and the kitchen stove can be lowered for those who can cook. Kitchen and living room area are communal and we shared the facilities with a couple and their small daughter for the first few days. After that, we had the place to ourselves due to some cancellations. The place was a Godsend. Originally intended for people with muscular dystrophy only, it took them 20 years of fundraising to build. Now it is open to anyone with a neurological condition. For us it means we know we have a place to stay in Dublin for the foreseeable future. Chapelizod is an ideal location for us, situated more or less between the North and South sides of the river Liffey, so equidistant from Maher and Malone sides of the family.

Roch and the kids made the annual Maher family trip to the ancestral home in Tullarone, Co. Kilkenny, the Dublin Maher family get-together was held in brother Mairt’s house in Clontarf – even the famous poker game took place – Roch cleaned them out, I’m happy to report! The womenfolk made themselves scarce on poker night. Kate, Maura and I took the opportunity to go to the theatre. We chose Tennessee Williams’ ‘A Streetcar named Desire’ at the Gate theatre. Not a barrel of laughs, it’s true (what can you expect from Tennessee Williams?) but we couldn’t help identifying with Blanche and her sister, who were also refugees from the menfolks’ poker game – although our return to Mairt’s house was a little less dramatic!

 

The menfolk gather for the big game

 

The IMNDA had provided a ramp and also a commode chair for Roch to use in Mairt’s house. Another anxiety removed and something of a milestone passed (no pun intended…)

When our time with the lovely MDI people came to an end (and we could not have felt more welcomed by them), we moved house to the Gibson Hotel once again, where the IMNDA had once again come up trumps – a standing hoist was waiting for us in the room. We didn’t need this piece of equipment  there last year but this time around, we really could not have managed without it. Roch needed it to get off the bed, the toilet and the shower seat. Just for the record, the Gibson room for disabled? Perfect.

We stayed there for three nights and on night two, they kindly sectioned off part of the bar area for a ‘Gathering’ of our own with friends and family.

As Roch’s carer, I found our time in the Gibson most relaxing, but overall, just to get away was refreshing and profounding satisfying to prove that four years after diagnosis, we are still going back to Dublin in the summer, as we always did.

Many, many thanks to the IMNDA and MDI for making it possible – and thanks too, to Paudie, who shared the driving with me on the way over (we made it by the skin of our teeth onto the ferry!) and Mairt, who was co-driver on the journey back. Thanks guys, couldn’t have done it in one day without you.