The Hospice Stay approaches

‘What should be the key factors for respite care?

To provide a place of care within fixed dates which have been agreed prior to admission.

To continue the patient’s normal routine as closely as possible, with changes only being made if clinically indicated.‘ Oxford handbook of PALLIATIVE CARE

The Hospice stay is approaching. I know Roch is apprehensive and frankly, I’m not sure how I will feel when he’s there, but overall I think it’s come at the right time. The wonderful Donna, our Hospice nurse, came to visit on Tuesday and we had a very productive and reassuring chat. It’s a ‘respite’ stay, which means that the stay provides a break from the difficulties of the situation for Roch, for me, for all of us. For Roch, it’s an opportunity to get to know the staff at the Hospice, and for the staff to get to know him. It comes at a time when he is well and he can communicate his needs, his likes/dislikes. Donna consulted with us and went away with a care plan, so the staff there will know how much assistance he needs with everyday tasks, what equipment he may require, whatever he might need to make his stay a pleasant one.

He will have a room to himself, ensuite, with a door out to their garden or courtyard, or a room with a decking area right outside. He can order a cooked breakfast (a full English!) every morning, made freshly just for him. The thought of that full English cooked breakfast has made a difference!

There will be a small fridge in his room - vital information volunteered by Donna before I even had a chance to ask.

She is anxious to reassure him, “It’s not a prison,” she says. “Your friends are welcome to come and visit you, bring you out for lunch, round the corner to the local pub in the evening.”

She has alerted the Chaplain - she anticipates lively discussion and debate between them. There is a small Chapel or at least, a room for private worship and reflection. I notice that she doesn’t mention this. She knows him well enough to know that this will not be a selling point for him.

We discuss what else he may need to make his stay more comfortable. We have no way of getting the electric wheelchair there ourselves, so Donna quietly ponders this. Later she calls to say that the wheelchair will be collected on the day of admission, before we leave the house. It will be there for him when we arrive. So, he will not be entirely dependent.



‘One example of respite care is the nurse-led approach. The respite nurse would carry out a home visit prior to the patient’s admission to discuss their care needs during admission, write a care plan that includes the patient’s routine and answer any questions. The same nurse would liaise with in-patient staff prior to admission about any specific requirements, e.g. nutritional needs, mattresses, equipment etc. This respite nurse would then admit the patient to the hospice, review them during the admission and assist in organizing their discharge.’
Oxford handbook of PALLIATIVE CARE


So - preparations have begun.
Here’s a peek at some of the essentials on our list:
Clothes (obviously) ie underwear, socks, tee shirts, jeans, tracksuit bottoms, braces, belt, shorts and tee shirts for bed
Fleecy
Raincoat
Crocs
The trusty rollator
The sock putter-on-er (essential piece of kit)
Moist toilet roll (no bio bidet I’m afraid)
His towelling robe
Two small towels (large towels are too heavy now)
Nespresso machine (he will no doubt be offering espresso to staff, patients and visitors alike)
Espresso cups
Nespresso pods (a goodly supply)
CIGARS and lighter(s)
Ashtray
Prosecco
Beer (preferably Okocim)
Books
Books
Books
Kindle
Kindle charger
I-phone and charger
Earphones
PC & Charger
Medication: Riluzole, quinine, baclofen, lorazapam, Vit E suspension, Vit C, Loperamide
Blanket/bedspread from home
Toilet bag: toothpaste, toothbrush, shower gel, shampoo, mouthwash, dental sticks, deodorant, facecloth.

‘It is widely accepted that keeping patients at home weighs heavily on those family members who will provide care and support. Caring for someone on a daily basis can be very tiring, both physically and emotionally, leading some carers to feel unable to manage, which may result in unplanned admissions to hospital. One strategy to help carers in this situation is for hospices to offer planned respite care, either as an in-patient or on a day basis within a day hospice, to enable carers to have a rest from caring. This may be sufficient to enable them to ‘recharge their batteries’ and continue the care they provide, thus allowing their family member to stay at home.’
Oxford handbook of PALLIATIVE CARE
　

　
It gives me a chance to rest, time to myself. Donna is firm with me “You’re not planning to visit every day are you?” She asks me. “The ward staff would actively discourage that.”
But no, I’m not planning to visit every day. I need some headspace, I need to sleep. If I feel like it, I will write. I have ordered a book from Amazon and hope to have time to read. I plan a DVD afternoon - just me, the sofa, the TV and some chocolate. I have taken the week off work. I begin to crave time to myself.
Tom has exams that week and will be on study leave - but that’s different, Tom’s my boy.

We have a bit of a running joke going, which Donna is party to - the ‘All about Roch joke’.
‘It’s not all about you, you know, Roch,” she says, laughing.
“Oh yes,” we say together, in mock protest, “Yes, it is.”

But we both know that this is about me, too.





　

"May the odds be ever in your favour..."

Well, we saw ‘The Hunger Games’ yesterday. Congratulations go to Eileen, who guessed correctly! Sci-fi, thriller, bit of violence, little bit of romance. Ticked a lot of our boxes. I would note that the wheelchair space is too close to the screen so I have a film hangover headache today (yes, truly film hangover).  However, very pleased that we made it, although I can’t say it was stress free. It seems to me that if you are disabled, the odds are not usually in your favour...

We left lots of time for our journey, which was just as well because the traffic into Kingston was animal. We had been hoping to investigate disabled parking close to the cinema but by the time we actually got into Kingston, there was no time left to explore. So we parked in the Bentalls car park and wheeled away briskly, manoeuvring smartly between pushchairs and toddlers, strolling couples and heavily laden shoppers. Down in the lifts we went, out onto the street and zoomed along to the Odeon. When we got there a friendly staff member, standing by the lift informed us that the lift was out of order. She was stationed there to accompany disabled customers up to the cinema floor via the goods elevator. So she brought us outside, round the corner and through the service entrance, so that we could use the goods elevator. She was very friendly and chatty (good luck house hunting in Cheshire next week, Jade!) and delivered us without incident onto the box office floor.

My heart sank as I saw the melee of people before us, a long queue to collect tickets from the machines, and an even longer queue for the box office. Jade was unable to find a staff member free to help us (their usual procedure, she said) and had to go back to her post, so we joined the queue for the box office, which is what I had been advised to do, when booking the tickets. Within minutes I realised that this was too stressful for Roch and the queue was moving so slowly we decided to move back, park him to the side and for me to queue at the ticket machines. At this point, I was beginning to think it might all prove to be a waste of time, as we were certainly past kick off for the programme start and I had no idea what time the actual film showing was to begin. Eventually I got the tickets and made my way through the crowd to Roch, who informed me that he had just sent a staff member looking for me. I went in search of her and she told us where to go for help after the film. By this time we were both dying for the loo, so after a (relatively) quick visit to the disabled toilets (full marks for disabled toilet facilities Odeon Kingston - now if you could just prevent the able bodied from using them so disabled people don't have to wait - how annoying is that?) we finally arrived into the cinema. The seat beside our wheelchair space was taken (not by a carer I might add and no wheelchair in sight), but the other wheelchair space was free, so we slotted in there and got settled - amazingly just as the film began! Whew!

But I’m so glad we made the effort. Next time I won’t arrange to go to the cinema on a Bank Holiday, leave EVEN more time to explore disabled parking nearby and enquire in advance if they have their lift fixed - Jade seemed to think they were planning to replace it completely, which might take longer but better plan in the long run, perhaps. I don't fancy getting stuck in their lift. I feel a letter coming on but must just say a thank you to the Odeon staff who helped us - all were friendly and obliging. It was just so busy there yesterday that it was difficult to find a staff member free.

The film, by the way, was excellent.

Apologies and performing seals

Reading over my last blog entry I realise with some dismay that the last paragraph may be read as a discouragement to those who would wish to share with me their experience of MND or talk to me about any sadness in their lives. In case that’s the way you interpret it, allow me to explain.

The situation I was referring to (and having a bit of a rant about) comes about when people produce a tragedy - NOT central to their own lives, but which in their opinion is greater in comparison, than the tragedy of living with MND/caring for someone with MND. They do this, I think in the well meaning, but mistaken belief that when you hear about their chosen tragic situation, you will feel better about your own. I just wanted to say that it doesn’t help me. If you have a broken leg and hear about someone with two broken legs, you may feel sorry for them, but it doesn’t make you feel any better about your own broken leg. If you are caring for someone with MND and someone who has no direct experience of either living with MND or caring for a loved one with MND tells you about someone they know who e.g. has just died suddenly (comparison being sudden death very traumatic and all that entails - aren’t we lucky having time to adjust? Or something…) it doesn’t make it any easier to watch the disintegration of your loved one over time. Oh dear this is turning into another rant. I hope you get my drift. I certainly don’t object to hearing sad stories and I hope I would be sympathetic but just don’t expect it to make me feel better about our situation…because it won’t.

Anyway, I don’t think we can ever compare tragedies - every terminal illness, bereavement or loss of a loved one results in suffering and I would never presume to say that my situation is worse than anyone else’s. So let’s leave it at that.

As you have guessed, I’ve been feeling angry and depressed by turns lately, which makes everything difficult. I also slept really badly over a number of nights last week and that always, always makes me feel worse. But the good news is that although I am tired, I am feeling up to things again. I managed my three days in work (ups and downs there, too), although on Thursday evening I sat in a more or less vegetative state in front of the TV for most of the evening. There was a moment when I went into performing seal mode, when Tom tossed me a chocolate bar from across the room and I rose up, clapping the bar between the palms of my hands, and sank back again, with a yelp of thanks. Otherwise, I just sat in a stupor watching past episodes of Frasier/ Friends (Roch was out with some real friends!)

However, here we are on Sunday, lots of laundry done, kitchen clean, fridge clean and sorted, shopping in, hair newly cut - chicken roasting for dinner. Roch is doing some work online, Tom is studying for his AS exams. We’re okay.

 I have booked two tickets for the Odeon cinema in Kingston for tomorrow, which I am assured has excellent disabled access. So hoping to have a bit of a bank holiday treat for both of us. What film? Wait and see! Bit of romance for me, bit of violence for Roch. See if you can guess what our choice is for tomorrow. He likes sci-fi and westerns (I don’t object to them) and war films (not my first choice). I like a good thriller, preferably with a bit of romance. We don’t always agree on comedy choice. I like historical settings - so does he, but we don’t always agree on period. See if you can work it out, if you’re interested!

　

　

　

Not feeling too chipper

Pauline, many thanks for your comment - you're so right, MND is bad enough without having to make decisions about things like the PEG. Thanks to you and Steve for your advice to Roch - greatly appreciated let me tell you.

Two of Roch's brothers visited this week - Mairt and Eoin. Both commented to me separately about how Roch was in such good form, and indeed it was true. Of course he was in good form, with two of his brothers spending all day and all evening with him. We all enjoyed their visit. The house had a lively, chatty, up-beat feel. It's not always like that. Since their departure, and Kate's departure back to Exeter, it's quiet. Roch woke up on Friday morning feeling weak and shakier than usual. His intention was to go to work, with the electric wheelchair, in the taxi - and arrangements had been made for a friend to accompany him. We got as far as getting showered, dressed and then he realised that he just couldn't do it. It didn't help that the rain was sheeting down, but I think he just felt he could not manage it anyway. Yesterday when he woke, his right leg refused to move. He rested for half an hour and then it randomly decided to cooperate again. We didn't do much yesterday. It rained hard and we stayed indoors, watching DVDs and munching on chocolate and pringles! Very enjoyable. But today there is a sadness in the air. We slept late and I have found it hard to motivate myself. We talked about the changes there have been recently and the changes to come. Neither of us is feeling positive. Roch says he doesn't feel very courageous today. You don't have to feel courageous, I told him. You are so brave all the time. It's okay to be scared. I'm scared too and I'm not facing what you are facing.

I could list all the positives, and there are some, I know that - but sometimes it just feels like a wasted exercise, because the scales are balanced so heavily against the positives. The big fat fact of MND tips the scales over every time and the more time that passes, the heavier the MND side gets. Let's try to list some positives:

1. He's not dead yet.
2. He's not in pain.
3. He can still swallow

Okay, okay so now you're saying these are not true positives, and a bit depressing in themselves. I take your point - so let's start again:

1. We have met so many wonderful people - people living with MND, their Carers, so many   wonderful health professionals.
2. We have learned so much more about each other
3  We have learned to value each other so much more
4. We have learned to live more in the moment and appreciate the beauty around us
5. We have had some terrific holiday experiences which we wouldn't have had
6. We have come to value our wonderful family, neighbours and friends so much more
7. We have discovered the hidden strengths in ourselves and in each other.
ER -
8. We have a brand new kitchen

Okay I'm running out now, because the ever-looming fact of big Fat MND crowds in on me. People you meet will tell you stories of other tragedies, sudden deaths and young mothers who die of cancer, and I'm sorry for all of them, and I know we don't have a monopoly on tragedy, but you know what? I think it's okay to rage at Fate, to feel angry and resentful, to feel scared and alone sometimes. It's a crap deal.

By the way - those other tragedies? Hearing about them doesn't help. Like I say, I'm sorry for all of those people, and their families and I'm grateful that I haven't got cancer (touch wood) and that Roch doesn't have cancer (touch wood again) but it doesn'/t make me feel any better to know other people do.

Percutaneous Endoscopic Gastrostomy - ironically, a bit of a mouthful

It seems that in the past month, there have been more changes in Roch's condition. Perhaps that's also been getting me down. I know it's been getting Roch down.

The nutritionist was here last week. We had forgotten about the appointment and Roch had been up for hours, working at his computer in the kitchen, I had gone back to bed. It was midday and I was dozing, taking advantage of a day off work to get some rest. When the doorbell went and I realised who it was, I was mortified. She probably thinks I stay in bed til midday every day now. I dashed into the shower and joined them as soon as I decently could, wet hair and all.
Roch has lost weight recently. His arms and legs are thinner. He always has a good meal in the evening but his breakfast is not good. Lunch can be a problem if I'm not around, although that's usually only one day a week. The days when I could confidently leave him to heat things up or transfer hot food from pot to bowl or microwave to table have gone. However, we are so grateful to our kind and helpful neighbour, Christian, who is happy to cook lunch for Roch and often stays to share it with him.

Roch never had much of a breakfast on work days, but once in work, he might pop out for a bacon sandwich mid morning. He can't do that now, although he sometimes sends someone out to do it for him. At home, he can peel a banana and on good days he can pour some juice for himself. But too often, breakfast is an espresso and cigar. He says he doesn't feel hungry in the mornings. Nutritionist Mary suggests milkshakes and smoothies. Now, why didn't I think of that?
She probably wasn't judging me, but I am judging myself. Still in bed at noon, and no proper breakfast for Roch. No wonder the poor man is losing weight.
Worse was to come. I had missed the part of their conversation where Mary suggested that Roch start to think about having the PEG fitted. I was shocked. There's nothing wrong with his swallowing. Surely it's too early for this?

For those of you who don't know, a PEG (percutaneous endoscopic gastrostomy) is a small feeding tube which is inserted directly into the stomach through the abdominal wall. In MND the muscles involved in chewing and swallowing can become slow, weak and uncoordinated. If swallowing becomes difficult, people living with MND may eat and drink less, resulting in weight loss, which in turn results in increased vulnerability to infection and further physical weakness. As I said, Roch has none of these symptoms.
Mary explained that it's best to have the procedure whilst the Patient is fit and well. It makes sense, but still it feels too soon to be thinking about this. I guess in my head, there are a number of major stages in the MND journey. Landmarks that indicate inevitable progression and decline. The PEG is one of them. I hate the very thought of it. I sat there in the kitchen with my damp hair, feeling inadequate anyway and tried to look as if I was taking it all in my stride. It was hard to tell how Roch was feeling. I had missed his reaction when she mentioned it first. Damnation!
Mary left some literature for us to read through and for me, it makes grim reading. Like the 'nippy' it belongs, for me, in some far off future,  when I will feel stronger, better equipped to deal with it, prepared for the further decline, more able to face advancement towards the inevitable than I am now. But perhaps this is all part of that preparation (I was going to say journey again, but twice felt too X-Factor).
Obviously it has to be discussed with the medical professionals also and it's just been suggested that we think about it but still, not easy to contemplate. How does Roch feel about it? Well, the good news is that alcohol can be administered through the PEG and will not only thereby enter the bloodstream and have the desired effect, but you  can actually taste it on your tongue!
The information sheet also tells us that Roch will be able to go swimming when he has a PEG, which is an added bonus as he hasn't been able to go swimming since August 2010!
Seriously folks, how does Roch feel about having a PEG? Quite simply,  he doesn't want it. While he can still eat with no problems whatsoever, we'll do our best to keep up his weight. Quite an incentive to eat your breakfast, I'd say, wouldn't you?

And quite a spur for me to make certain that he does.

The Greensleeves incident

The brand new electric wheelchair has arrived - and just in time, too. A couple of weeks ago, Roch's niece, Aisling came to visit with her boyfriend, Dave. It was lovely to see her again and to meet Dave and Roch thoroughly enjoyed the afternoon they spent with him. When it was time for them to leave, the sky was overcast and as a downpour was clearly imminent, I offered to drive them to the station. When I got back, a strange sight met my eyes. Roch was sitting on the floor, with his back against the old green sofa and Tom was carefully removing one of his socks. I thought at first that, falling, Roch had damaged his ankle, but thank Goodness, it wasn't as bad as that. Apart from some bruises, he wasn't hurt at all. He had fallen, yes, and Tom and Kate just couldn't manage to get him up. Bare feet, they had all three decided, would allow better purchase on the laminated floor. Between us, and with the help of two kitchen chairs, we soon had Roch comfortably seated again. Everyone had kept their heads, and followed the procedure!

Naturally I requested a report and was met with three rather sheepish faces. It seems that Kate and Tom had been in rather a giddy mood. On a sudden whim, Kate had hopped onto the rollator and Tom had whisked her away merrily, down the house at speed, to the tune of 'Greensleeves'. Meanwhile, back in the kitchen, Roch decided he didn't need his rollator anyway and rose from his chair, intending to make his way round the room, using the counter and cupboard handles for support. Thus on the Greensleevers return journey, as they rounded the corner from the hall into the L-shaped kitchen/tv room, they were met with the sight of their father's feet, sticking out along the floor, the rest of his body not being visible from that angle. To be fair, I think it gave them quite a shock. But it makes an excellent story. If you don't already know, my children are seventeen and twenty, respectively! (As a matter of fact, I'm rather pleased than otherwise at their demonstration of light-heartedness. When I cast my mind back to a very early blog, I remember noting how appalled Tom was by the sight of the rollator on its arrival).

It's been some time since the last fall. Partly, I think, because he's using the rollator now and not the sticks. But the day after the Greensleeves incident, he fell again, once more in the kitchen. He says his knees just 'go from under him'. It's less like a fall, he tells me, more a 'fold and flop'. Maybe that's the Baclofen - relaxing the muscles.
I had just left for work and Tom was preparing to accompany Roch to work in the taxi. Lately, Roch has been feeling less confident about making the journey alone. I think he's especially nervous about arriving at work. He needs help to get out of the taxi and help to get from the taxi into the office. Work colleagues are good about this, but it does depend on who's in, who's free to come outside to assist and the whole business makes him understandably anxious. For such an independent personality, it must be incredibly difficult to have to rely on other people, no matter with what good grace and willingness help is given. Anyway, lately as I say, Tom has gone along, as he's been on holiday. So when Roch fell the second time, Tom was around and Kate and her boyfriend Simon were there to lend a hand. So that was two falls in as many days.
A positive outcome has been Roch's decision, that very day, to begin bringing the wheelchair to work. He's been relying on the rollator up until now and in a way, it's a relief to me that he's bringing the wheelchair now. It was a worry. At the end of that first day he was surprised that he felt less tired than usual!
He's been out a number of times in the electric wheelchair, although not alone as yet. I smile to see him whizzing along. Speed suits Roch.
The second trip out saw a bit of a setback tho'. The footrests had been set too low and there was an ominous 'crrrunch!' as he whirred his way down a steep curb to cross the road. Reversing only made matters worse, as the footrest then got mangled underneath. The rain didn't help, but we made it back, damp but undaunted, mangled footrest held high and the chair has been fixed and used again without mishap. I can see it's going to be a Godsend. And as I say, not a moment too soon.

The Carer's Assessment and its aftermath...

First things first - Helen and Judy - thank you so much for your words of encouragement. I value every comment and am so grateful that you read the monkey blog. Helen - was that really your husband in the clip?!!! Our MND community is a small one, they say - and they're right. Some day it would be nice to get together...

The Carer's Assessment

Two weeks ago I had a Carer’s Assessment. It felt very odd, being asked questions about myself and how things were affecting me. But it felt good, too. If felt good to be the centre of attention!
 As I answered the Social Worker’s questions I realised just how much our lives have changed over the past three years, over the past two years, in the last six months. I suppose what I’m trying to say is that reality really hit home. I have talked in this blog and elsewhere of being a Carer, of how our lives have changed – but to be fair, it’s been gradual enough. I have more or less blithely gone about my business, doing what needs to be done. That’s my life, the life of a Carer, it’s just the way it is. As I answered specific questions about what I do, what his capabilities are now and how they have decreased, how much time I spend each day doing various tasks etc. I began to realise just how dependant he is on me and how much more dependant he will become. The full force of being a Carer hit me.

After my interview, I saw a support worker. Now I know why they make themselves available after Carer assessments. I can’t remember when I last cried, cried properly – not just eyes filling with tears or feeling my throat constrict suddenly. But proper bawling. Yes, there I was, with a complete stranger, sobbing my heart out.  My counsellor will be proud of me. The floodgates opened at last. I cried for him, for me, for the children – I cried because I felt overwhelmed by the responsibility – because I looked at my life and thought – what was I thinking? How did I think I could do all this? Work, look after Roch, look after the house, the garden, be all things to all people. Afterwards I was exhausted. I pulled myself together with difficulty.

The day after my assessment a work colleague happened to ask how Roch was and I started to cry. That’s not so good. I got through that day, though, stayed late and did as much as I could. But over the following few days I felt distinctly ‘flaky’ – very tired, low in mood and low in energy.  I worked my first day last week (a Wednesday) – feeling ‘flaky’ but happily rising above it to successfully lead a training session for volunteers – only to wake at 5am the next morning with a migraine, which proved unhappily persistent. Next day, I felt worse! I came to the conclusion that I had picked up a virus. Maybe I had. Or maybe it’s psychosomatic. Maybe my migraines and back pain are symptoms of repressed rage (thanks Lerick and I am reading the book you sent – there is so much anger). Or perhaps my body simply told me enough is enough – you have to go to bed now, you have no choice. It was right, I had no choice. Once the pain shooting through my head receded, I slept and I rested and I slept some more.

So today, I had more energy. I tidied, cleaned and did some ironing. I stripped sheets and changed the bedding. I sallied forth to buy supplies, basics like milk and bread, eggs, garlic sausage, the Guardian and beer for Roch. I finished a story I was writing. I made a delicious, nourishing milkshake for Roch, following advice given by Roch’s nutritionist and here I am writing this blog at 12:40am. What is that telling me? That I’m crazy? Will I have another migraine tomorrow? God I hope not. But I am probably crazy - or have I climbed out of the trough, the slough of despond? It seems so. There are so many reasons to stay there – I know some of you Carers out there would be able to hand me a list, but not one of you would linger there long. I was there for a while and perhaps I will find myself there again tomorrow. There’s no doubt I will find myself there again sometime but hey – that’s what being an MND wife is all about. Pick yourself up, dust yourself off, and start all over again.