There's nothing good about the monkey

So here’s the thing. I hesitate to blog if I’m not feeling positive, if I’m feeling resentful, tired and fed up. Who wants to hear about the bad times? Sometimes I surprise myself and realise that underneath the daily coping exterior is an angry person. A person who fears the future and is afraid of what the monkey can do. Someone who sometimes wishes they were free to live a life that is all their own. No ties, no responsibilities to anyone else. It’s hard to admit that there are days when you don’t even like the person you care for much and you like yourself even less.

I hesitate to blog about the times in our house when anger will out. When there are misunderstandings and bad feeling, the times when the anger and frustration I believe Roch feels emerges unexpectedly from the hidden place and we are all ambushed by it. Our usually harmonious household is thrown into upset. The times when I cook a meal, hoping to tempt his waning appetite and feel angry when my attempt is undermined by an argument between him and Tom (usually just as I serve the meal) and the food turns to ashes in my mouth. Then I think “Why don’t I just serve up a plate of baked beans for everyone?” That’s nourishing and I wouldn’t feel so disappointed when my stomach churns with upset during the row and nobody wants to eat anymore.  

Families have arguments and things can’t be harmonious all the time, and there were lots of arguments before – but the monkey makes it so much worse. It complicates the former dynamic. Roch - strong, confident, manly as father and husband, must now feel that he is losing control.  He used to be able to storm out of the house in a rage – now he can’t even move from his chair.  A row with his son takes on an extra edge. There are more flashpoints. A task not carried out soon enough, a disrespectful remark, is bad enough when Dad is in the whole of his health. Now he is dependent. He tells me that sometimes he feels helpless, useless, of no account. I am sad that he feels like this but to us he is still a powerful presence, central to our family – we all seek his good opinion and want him to understand us. But he is stubborn, and sometimes it feels as if he wilfully misunderstands us and so we tie ourselves into knots to explain ourselves. If he is angry he doesn’t have the option of storming out as before, so he withdraws. It’s painful for everyone. I think we try to treat him as we would have before the diagnosis, not wrapping him up in cotton wool. I think he prefers it that way.

At the same time – other forces are at work. How long will we have him? Will we look back on these times with regret? Should we have made more excuses for him? Been kinder in our response? Is our anger with him somehow exacerbated by an unacknowledged anger directed at him because he has MND? Are we really angry with the monkey?

Let me not be the one to cast the first stone – it’s not just about Roch being stubborn or angry – I can be stubborn too, and am not above an angry outburst. At those times I don’t see him as vulnerable or disabled – I feel no need to protect him. But sometimes afterwards I do feel guilty. Who wants an angry carer? This is where the carer/wife dynamic gets complicated. The balance in our relationship is shifting.

And for him – I guess on some level he may feel that he can’t afford to alienate his carers, especially me. So after an argument he won’t ask for help if he is angry with us – it must take a major pride swallowing exercise to call your carer and ask for help going to the toilet after words have been exchanged. How he must hate that. And I hate to offer help in a mood of resentment.

As for his relationship with the children – I don’t want them to have memories of “Angry Dad” – but I suppose I can’t avoid this. They will have other memories.

The MND Association have an Optimism campaign – and I totally get this, but I think it’s another reason why I hesitate to post negative feelings or report negative thoughts. There’s a whole debate about this. I agree that people newly diagnosed and their families deserve to be introduced slowly to the realities of Motor Neurone Disease and so in terms of hard-hitting publicity campaigns, I see that these could be potentially terrifying.

But as we get further into this (and we haven’t reached the ‘messy’ part yet) it will get harder and harder to take a positive view.  Of course you have to maintain a positive attitude just to get through the days but we can’t be blind to the hardships and reality of the disease, whether physical, emotional, social or financial. In general, people don’t know enough about what it’s like to live with it and I don’t want to collude to protect everyone from the reality - sometimes I really have to be honest and say that this whole thing sucks and report on the days when you couldn’t be positive if your life depended on it. As my mother says, “There’s nothing good about MND.” We all have good days and bad days and we are all of us doing our best to get through this. I can’t say I’ll be the same person afterwards. It’s a painful journey and everything in our lives is made more complicated and more difficult because of the monkey. It’s a filthy, vicious little animal and let’s not ever forget it.

Standing Together

Yesterday Roch, friend Terry and I  went to Beryl Foster's retirement party at Linden House, in Hammersmith. It was a lovely evening and I felt really honoured to be there. For those of you who don't know, Beryl, Founder-Member of Standing Together against Domestic Violence has been the principal driving force behind Domestic Violence Policy change in Hammersmith & Fulham since 1975. Roch sat on the Domestic Violence Forum for H&F for a good ten years as the Housing representative. As he would say, Beryl moulded him expertly! He was mentioned in her Farewell speech and I think we both had tears in our eyes as she described his integrity, and his empathy and compassion when interviewing survivors of domestic violence - even when he could not meet their housing needs. That's quite something, when a Legend like Beryl - who has, over the years, (with the help of many others dedicated to the Cause) managed to spearhead change throughout the Borough to create multi agency partnerships with the aim of meeting the needs of women fleeing domestic violence.

Good luck Beryl on your retirement, and hope to see you again soon.
Many thanks to Beryl and Bear for making all the arrangements for access for Roch - and to the wonderful staff at Linden House for their kindness and attentiveness. And as always, many thanks to our faithful friend, Terry for helping to make it such a memorable evening.

http://standingtogether.org.uk 

"Launched more than 10 years ago, Standing Together works to promote a coordinated multi-agency community response to domestic violence. This approach recognises that no one agency can tackle domestic violence effectively if acting alone. Without effective coordination of activities between agencies, responses are less effective and survivors of domestic violence are still at risk of falling through the gaps in the system."

"Standing Together's Ambition is to eradicate domestic abuse by embedding enduring transformation in the way organisations and individuals think about, prevent and respond to it. Through partnership working, we safeguard families and communities; effect change in damaging behaviours; secure justice for the vulnerable; and overturn equalities."

                                                    

Roch with Beryl Foster OBE at his retirement party in September


 

 

Groundhog Day

One of the myriad unwelcome aspects of serious illness is having to accept that there will be certain intrusions into the privacy of your home. I’m not speaking of visits from the professionals – that could feel intrusive, but rarely does, as all the people we deal with are very aware of our time and our privacy and most respectful of the fact that they are in our home. But accepting help in the home from Personal Assistants has been very hard. Hardest on Roch. There are a number of elements at work here. Firstly, accepting help from anybody is difficult. The very fact that such assistance is necessary because he cannot manage by himself is the uncomfortable starting point. Secondly, we decided to employ two people we knew as the lesser of two evils – on the very scientific basis of ‘Better the divil you know…’ There is something to be said for it. After all, who wants to have strangers in their house? The time will come when we won’t have an option but we decided to stave off that evil day.

But I’m not sure it was such a great idea. Not a working day goes by but I come home to a litany of complaints – don’t get me wrong, they are good people, they carry out the basic duties sufficiently well – but there are difficulties with both. Because they are friends of Roch’s there are boundary issues. For example sometimes it feels like one of them at least acts like he’s a guest in the house instead of an employee and because he’s a friend, it feels hard to take him to task for this. 
 
The other (PA Number One) will be the first to admit that he has a short term memory problem and Roch and I have discussed this ad nauseam – we knew what he was like when we took him on. Endless chatter and constant questions. Instructions have to be given over and over again. This is incredibly frustrating for Roch and there are times when he says he comes to the limit of his endurance and patience. I say to Roch – we can’t complain about it now. He is a lovely person and we are very fond of him – his own fondness for Roch is clear and his goodwill towards all our family never in dispute. But he drives Roch crazy at times.  At the beginning of every single shift, Roch goes through a list with him – a list of rules to follow. The preamble reiterates all the things he gets right – the absolute essentials, like showering Roch and dressing him – how honest he is, how willing. Then Roch goes over the rules. It’s like Groundhog day without Bill Murray and well, without the actual groundhog.

Here are a few of the rules:

•             Try to listen to the answer to your question.

•             Think before asking a question - do you already know the answer?

•             You don’t have to talk all the time. Silence is golden and is very precious to me.

•             The line between employer/friend is a delicate one. It’s hard to get the balance right. Try to remember you are here to do a job when you come for a shift.

•             Key words are Focus/concentrate!

Jo, our Community Matron, came up with a very helpful suggestion and is referring us to the Learning Disability team for advice on how to deal with him. I think she’s right and we can’t correct his behaviour – but what we may be able to do is learn some strategies for dealing with it. I don’t think he can change. I do sympathise with Roch – you really have to be at the top of your game to spend any length of time with him. It would never work if Roch couldn’t speak and issue instructions.

So that’s PA number one. What about PA number two? He, too, is a friend and has trouble with the boundary as an employee.  Again, it’s difficult. He is willing, friendly and fond of Roch. He carries out the basic duties well, although we think he suffers from ‘performance anxiety’. Occasionally simple tasks seem beyond him and yet he is intelligent and can carry on a decent conversation with people (just don’t talk to other people in the house when you’re supposed to be assisting Roch with something). He seems to forget why he’s here sometimes. For instance, one morning I left for work at 7am and he was to come at 10.00am. This was just around the time Roch was beginning to find it difficult to get out of bed by himself. That day he just couldn’t do it and was waiting for his PA to arrive. Our wonderful cleaner had arrived at 9.30am and was busy in the kitchen. To his irritation, Roch heard his PA arrive and spend about fifteen minutes chatting away to her as she tried to work. I was really cross when I heard this – why does he think we pay him? Roch had to text him to say he was desperate to get out of bed. Sometimes I think he’s a bit dim – other times I think no, he’s really intelligent – he’s just in denial that he’s Roch’s PA.  I have trouble understanding what’s going on. Roch is adamant – he’s annoying, he doesn’t know how to behave sometimes but Roch won’t let him go. Better the divil you know…
A good friend suggested that Roch cultivate some compassion for them as they are the ones who are challenged – “See how they turned that one around on you!” Nice one, Lerick.

There is more at work here than Roch’s loyalty to his friends and we have talked about this. Perhaps it’s about feeling in control and more ‘able’ than your PAs. Both of these men have relied on Roch in the past for advice and support and they both still benefit from this. His friendship has been really important for them. It still is. Let’s face it, Roch looks after both of them and perhaps it’s just as important for him to continue to do this. So, there exists a co-dependency in both relationships.

Now we have been granted extra hours by the LA I think we should employ PA number three, rather than extending the hours of the existing PAs. Someone who can drive maybe? Someone who doesn’t need to be looked after by Roch. That might be refreshing but would it work for him?

 

 

 

“Make the necessary preparations to assist you in the process of unwinding..."

My good friend Cecilia passed the following Yoga Nidra practice meditation to me. I am really  grateful as usually I find it so difficult to meditate and yet it’s just what my poor overtasked brain needs – a rest. I know my counsellor believes regular meditation practice would benefit me greatly – and I agree with her! I just haven’t been able to do it.

However, the practice meditation Cecilia passed to me seems to work – there’s something about the soothing tones of the woman who gives the instructions. I think I’ve got a ‘girl crush’ on her or at least, I’m half in love with her voice…I find I can concentrate and for almost 30 minutes, my mind is at rest. For me, that’s a huge advance. Thanks, Cecilia.

I thought I would share the link with you! Especially all you Carers out there. If it works for me, it will surely work for all of you.

So “Make the necessary preparations to assist you in the process of unwinding…”

http://www.youtube.com/watch?v=DsmuKeOtXV0

Life as we know it

There was sad news from our West London branch of the MND association. News of the death of John Walker, one of our members who had been living with MND. His wife, Anna, attended a number of the Carer Support meetings and I met her there and at various Open Branch meetings with John.  John’s is the most recent death, but there have been others in the last few months.

I understand that he was in hospital, and had double pneumonia and also that he did not have his eye-gaze technology with him, so could not communicate at the end. I know that this is a frequent occurrence for MND patients and wonder if it has to be so? I don’t know all the facts, so I will not comment further, but I hope to return to this issue in future posts.

I was saddened by the news of John’s death. Anna and John have been much in my thoughts.  I had not known he was so ill. I was also aware that the news of his death came as a shock to my – what? Complacency? It made me ask myself some questions.

Questions like “Am I being too complacent?” “Am I failing to face the reality of Roch’s condition?” “Do I take things for granted?”

I cannot comment on John and Anna’s situation or how the disease progressed in his case and in any event, would not presume to do so.

But the truth is that the progression of Roch’s ALS has been so slow to date that we have been granted the gift of time. Time to adjust to changes and time to learn to cope with new challenges. Each change then simply becomes ‘Life as we know it.’

Because life for many people living with MND and for their families is different from our own experience – so far, at least. Yes, Roch is almost completely wheelchair bound – but can still take a few steps with ‘Roly’ (rollator), stand in his favourite corner in the kitchen by the Nespresso machine and make himself a coffee. He can get himself out of the wheelchair and enjoy a cigar at the back door although more and more now, he stays in the wheelchair to do this. He can still speak,  swallow and breathe unaided.  On June 16^th, it will be four years since diagnosis. This is slow progression.

Yes, he is losing muscle mass. His arms and legs are much thinner. He is beginning to have a problem with transfers. His voice sometimes gets tired (but this is not due to bulbar symptoms). He also finds it tiring to feed himself and will only occasionally consent to assistance – but he can still swallow his food and enjoy his drink.  He has a strong constitution (how many of you have heard the FCA (Irish Territorial Army – Forsa Cosanta Aitiuil - speech? Trained killer, crawling through cow pats and sheep shit in all kinds of weather, cold showers (after crawling through cow pats?!!) etc.) Well, he has a point, it did make him hardy and before he was diagnosed with MND, he often went to the gym three times a week. It makes him sad to think of losing that now. But I think his hardiness will stand to him in the days ahead.

I have been at support meetings where fellow carers have spoken of the dreadful problems and acute distress caused by the rapid appearance of symptom after symptom, leaving little time to prepare, adjust or arrange the necessary equipment/support/treatment. We are not in that situation and there have been moments when I have felt like a bit of a fraud in their company, having left Roch at home, comfortable in his chair, having eaten a hearty meal, Prosecco within reach and loudly declaiming some football manager or referee as he watches a match on TV with Tom.  At those times also, I am conscious of a feeling of panic as I am granted a glimpse into a future I would rather not even think about. But it hasn’t happened yet and in fact, we don’t know what will happen. I recently remarked to our branch contact, Mandy, that I feel like a fraud sometimes. Not a fraud, she said – Roch is lucky.  Yes, she’s right. We are lucky.

And we are also lucky in the support we receive from all the professionals. Yesterday, we had a visit from our Community Matron, Jo. She was here to do a ‘Continuing Care’ assessment for Roch, as we have requested more hours from the Local Authority on the Direct Payments Scheme. They needed to establish that Roch had not progressed to the point where his care should be transferred to the NHS. This would also save the Local Authority some money! Anyway, she established with us that he doesn’t need this yet.

We had a long chat with her and brought her up to date. Her visit left us feeling very reassured on many points. We can talk to Jo about our fears for the future. We know that when there is a problem, we can call her. In fact, we have a list of people we can call on for different problems and we know that they will move heaven and earth on our behalf. Jo, Donna, Jenny, Amber, Shelley – are just some of the professionals we can rely on who work with us from home.

So maybe life as we know it makes me complacent sometimes and maybe I do take things for granted. But sometimes lucky people do, don’t they?

 

 

A horrible time

I have been ill. You know, the kind of ill when the principle thought in the confused jumble of thoughts fogging your over heated brain is “When will the antibiotic start working?” You learn to keep still as a stone in the hope of stemming the waves of nausea so you can keep the medication down and control the temperature. Nothing else matters but getting better and if anyone had told me in those first few days that it would be two weeks before I could be useful again, I would have been aghast. But so it proved. For a Carer this is a problem. What happens to your Charge? What happens to the household?

For us, Roch’s two Personal Assistants had to come in every day for six days, taking it in turns to get him up, showered and dressed, and under his direction, to prepare the evening meal. Tom was able to help him to bed every evening. The essentials were done. I was too ill to need or want anything much. Tom brought me what I needed when he came home from school. What happens to people who don’t have these options?

Once the acute period of my illness passed (I had tonsillitis), and my temperature was down, I was still too weak to resume my duties, but help was at hand. My sister Maura came over from Dublin and ran the household for us for a week. She shopped, cooked, organised laundry and made sure I started to eat properly again. What a star she is. The PAs looked after Roch’s needs in the mornings but no longer had to cook an evening meal. Monday was the first day I dressed and was able to feel useful again. Maura has gone home now and I am almost back to full strength. I am trying not to overdo things and aiming to get back to work for the weekend. I know if I do too much I will end up with a migraine. So did I run myself into the ground? Probably. But it’s hard to avoid it. I certainly forced myself on when I was feeling really dreadful but what else can you do? People tell me “I don’t have time to be ill. I just don’t give in.” Okay well how do you manage that, then? I didn’t have time to be ill but I was forced to give in. Tips welcome.

It was a horrible time for everyone and I don’t know how we could have managed without Maura and without the help from Roch’s PAs, although I know Roch found dealing with his PAs incredibly frustrating at times. How he longed to be able to look after me and do everything himself, like in the old days when I was ill. Like the chicken pox Christmas – when Kate, Tom and I all had chicken pox and Roch held the fort, ably assisted by my mother. Gallons of calamine lotion were lovingly administered. What an itchy Christmas that was. 

Or the time I got that putrid sore throat, which made me so ill on a Saturday night that Roch had to drive me to an emergency room somewhere – I was practically delirious – and we only just made it to a late night pharmacy in time to get the antibiotics. On that occasion the medication worked almost immediately, which was just as well, as when I woke on the following Monday, Roch had come down with a mysterious virus, which felled him for three weeks straight. Family life is like that.  
It’s hard for him to feel he can’t look after us like this anymore. My priority must be to avoid illness, I guess.  I do have a good, healthy diet, I usually sleep well enough – I could probably do with more exercise. I don’t smoke or drink alcohol (well, perhaps the occasional drink!) Vitamins?

I have arranged for some Reiki healing this week, before I go back to work. I need to do something to stay well. I don’t have time to be ill. I didn’t give in, but my body did.

Crazy Cat Lady comes home

Written on 16 February at Dublin airport.

'My last blog post was written at Heathrow as I arrived nice and early for my flight to Dublin and with time to kill. I managed to hit 'publish' on the plane before take-off in a bit if a rush! Here I am on my way home again waiting at the gate at Dublin airport for boarding but too early so I'm the only one here. Time to reflect on my short visit home and prepare to set my shoulders to the plough once more. Sad to leave my mother behind, but looking forward to seeing Roch and Tom again.  I have been surprised by how tired I've felt in Dublin. I took every opportunity to rest and spent some long overdue catch up time with my mother. A couple of long walks in Marley Park with Maura, a meal out with family and a George Clooney DVD watched with his biggest fan (my mother) made for a quiet, uneventful trip.

I haven't worried about Roch in the hospice - we spoke half way through his stay and he was so pleased with the kindness and professionalism of the staff. All his fears had been put to rest. 

The first day without him I emerged at first no longer as Roch's carer but as Crazy Cat Lady. It was freezing outside but I ventured out into the wintry garden air clad in pyjamas, cosy hooded dressingown, Wellington boots and sheepskin jacket. Accompanied by our cat, Oscar, beside himself with excitement, I took  a tour in search of signs of Spring. A funny couple we must have made. In a bygone age we would have been branded a witch and her familiar. Oscar bounding ahead, then stopping to look over his shoulder at me, before dashing up the birch tree. I kept up a running commentary for his benefit. As I fixed and filled the bird feeder and hung it back on its branch he watched with feline approval. "Bait", he was probably thinking. 

He nudged my arm as I took some photos of buds and flowers and seemed so pleased for the company. I am seriously beginning to think that I have been neglecting the emotional well being of that animal. A good session of chat and scratch and when I went for my bath, he disappeared to snooze the rest of the day away. 

Ahh that bath. Although it was mid morning, I lit scented candles, filled the bath with bubbles and soaked for ages, listening to music which I deliberately played far too loud. Now it's not that Roch would object to any of this if he was at home but I just couldn't do it. I just wouldn't be able to relax like that. I have to be on hand, ready in case I'm needed. Certainly during the day. I could make sure Tom was around in the evening and yet there's nothing quite like having the house to yourself - just for a while. 

Boarding now...'

I've been home since Saturday evening and Roch's been home since Monday. It's taken a few days to get back into our routine here but it's great to have him home and know that his hospice experience was a positive one. He had lots of visitors throughout the week and on Sunday, Tom and I brought him out for lunch at the nearby Prince of Wales pub, where we enjoyed the delicious food and lovely atmosphere.  We had signed out at the hospice reception but didn't realise we had to tell the nursing staff too! They were practically forming search parties when we got back! Oops! 

Thanks to Gerry who made sure Tom got to visit his Dad during the week and to everyone who made my visit home possible and Roch's stay so comfortable. 

It's good to know that The Princess Alice is there for us.