Thursday, September 30th 2010

First meeting

My new bed and mattress proved a big hit last night – very comfortable indeed. A sure sign of being back at St Michael’s was the fact that I had a delicious cooked breakfast in bed with tasty bacon, nice golden crisp fried bread and an egg with a lovely runny yolk to dip it all in. Yummy!

It’s my first full day at St Michaels Hospice and already I’m having meetings. Early this afternoon my care manager arranged for me to meet a representative from an agency specialising in live-in carers. Now I’m not keen on this idea at all so it was always going to be a hard sell to try and convince me that it would be the right move. Of course even I have to admit that on paper it makes a lot more sense to have one carer on hand day and night. Immediately all the problems of coordinating day staff disappear and you gain a degree of continuity that cannot be matched by day care. However, even with a live-in carer I would still need various other day care staff for double up duties and relief work whilst the main carer takes time off. How much time they take off depends on how long they are on assignment. For instance during the first couple of weeks a three-hour break per day is expected. After two weeks a 10 hour break on one of the days each week is expected. Apart from that live-in care would be available from around 7 AM to 11 PM. Realistically of course this is to be expected that no one can be expected to provide care 24/7. At least with this particular agency they don’t rotate their live-in carers every 2 to 3 weeks and instead aim for at least three months, sometimes much longer. In situations like mine where the health needs are quite complex and progressive continuity of care is very important. I do not want to have to continually explain everything especially if communication becomes difficult.

We talked a little bit about the agency, the type of people they employ and where they originate from. Predictably with this kind of work all the carers come from overseas, typically from such places as South Africa, Zimbabwe, New Zealand and Australia. I’m told that some of these people are nurses in their own country but are not recognised as such here in Britain. Looked at in a positive way it is at least an indication that the carers being provided should have a degree of education and experience that is sufficiently higher than say some of the people who have come to me direct from working in shops or offices.

To be honest I’m not overly sure about this particular care agency as everything I have seen on their website including their testimonials indicate that they are more setup for very elderly people. It didn’t help speaking to a woman who didn’t exactly set the world on fire promoting either the company or the carers. In fact most of what she told me I’d already obtained from their website. Whether they have the right people currently available to support someone with MND remains to be seen. They seem to think they might have a couple of people who may prove suitable but they are currently on assignment already, although I’m told they are coming to an end soon.

At the moment I have not made a decision one way or the other. I’m going to give it some thought over the weekend but I’m obviously conscious of the fact that time is ticking away. I’m still feeling down about losing my existing package to be able to think objectively. Now I’m caught between the devil and the deep blue sea and neither of the options I currently have to play around with have much appeal.

Before I sign off I would like to try something different and try for a bit of audience participation. Would anybody reading this post who has had experience of live-in carers care to share their experiences, whether they be good or bad? The comment field at the bottom of this post is patiently waiting…

Mark

Bookmark and Share

Tuesday, September 14th 2010

It never rains…

I had a meeting with my care manager this morning as I quite often do. Like usual I assumed it would be to discuss the care package, talk about any problems and concerns I had, and to update me on any changes coming my way. But instead she opened with the line “I’m afraid I’ve got some very bad news”…

My care agency are pulling out of my care package at the end of the month! I now have just over two weeks to make alternative arrangements! For a moment I was left stunned at the completely unexpected hammer blow. Why are they doing this? Because they say they can no longer support it. Why? Apparently it’s because they are unable to provide the right people. I’m hearing, through other channels, that it’s because all the new people that are being sent to work with me lately are proving unsuitable (and that’s being kind), and all the people I have identified (and there are at least half a dozen) as suitable and competent either don’t want to work with me (because they don’t like the hours being offered) or are unable to because the office won’t move them from existing clients or they don’t have enough spare capacity. Hence we’ve arrived at the situation we are in now.

The above is of course a simplification of a situation that has been steadily brewing for the past two years. When I first had a need for professional care in October 2008 I was already thinking ahead to a time when I would be heavily disabled and therefore completely dependent on others. So one of the main objectives was to try and build a care package consisting of a group of reliable, competent and loyal carers who would stay with me throughout the course of the disease. I also wanted people who would work well with each other and as a team so that they would be prepared to cover each other in times of holiday or sickness. What I was trying to avoid was having major upheavals in the care team supporting me during the later stages of the disease. By this time I was hoping that all the problems would have been ironed out and everything related to my care would run smoothly. How naive I was to think that there was stability in the care sector!

To be honest I’ve been under a lot of stress lately even before today because I was aware that one of my main carers was leaving soon and it was hard to see how we would replace her because of her range of skills. She also had a willingness to work not only her own hours but to fill in and do any hours that nobody else was available for. In fact it is because of her that the package has been kept running relatively smoothly all year otherwise we would have reached this point many months ago. She is a key and critical member of the team. In fact I have often remarked to my care manager that there are essentially three pillars holding my care package in place. If any of those pillars were removed we would be in serious danger of the whole package collapsing. The fact that this is exactly what appears to have happened shows how deficient the management of the care agency have been in allowing the situation to develop.

The trouble is for every person like Ann, Debbie, Francesca, Alison, Kim and Alli that have looked after me, there have been a dozen or more that have come through my door that are either clueless, incompetent, lazy, dangerous, lacking in imagination or seemingly only able to work to a predefined script and hopeless when circumstances change. It certainly feels at times that there is something of a lottery in terms of who turns up: will it be someone experienced, palliative care trained, or will it be someone that has just finished working in a department store? That may not sound a particularly nice thing to say but if you were in my shoes you would understand.

We’ve been trying to get more skilled people into the package for months without success. Even more frustrating is when we do identify them and nothing gets done. For example early in the year Debbie identified a young Nepalese girl as being absolutely perfect for this package. She’d just started with them and was already getting good feedback from clients but for some reason was never put into this package until a few weeks ago as emergency cover. She was the girl that I previously commented on, and like Debbie I immediately saw her potential as an excellent carer. Since then I’ve tried and failed to get her added to the team. I am convinced that had the agency taken this and other requests about personnel more seriously we could have easily averted the situation I am now in.

What concerns me now is that I am being told that because of the cost and complexity of my package it is very unlikely that Continuing Care would fund another one like it. I am being told in quite strong terms that we need to start looking at live-in care which is something that I have fought long and hard against all along. It doesn’t work for everybody and I feel certain that it wouldn’t work for me because of the private nature of the person that I am. We cannot just push people together and expect them to get on, and I never want to feel uncomfortable or unhappy in my own home as that is all I have left me. It also fails to give me the continuity I desire as live-in carers rotate regularly.

The problem with having Continuing Care (which is care paid for by the NHS and is not means tested, but is only awarded if the need is health-related) is that your care has to be delivered by an approved agency. In other words the client has very little say in who provides their care. This is different to having something like Direct Payments in which you get a pot of money from the local council (who will means test you and is not relevant in my case anyway as my needs are health-related) to go out and buy your own care. So in other words I will have very little say in what is going to happen next and to make matters worse I am being told by my care manager that even if we could get funding for a similar package to what I have now I would be looking at about eight new people. On top of this she is telling me that she is having lots of problems just getting three calls a day covered regularly for other clients with the two agencies on the approved list.

I feel like I am caught between a rock and a hard place. On one hand I hate the idea of having an endless stream of live-in carers (plus additional staff from local agencies to handle the double ups) who come from foreign lands, stay for a few months and are then replaced with another one, whilst on the other hand I am fearful of going to another agency for day care and getting exactly the same kind of problems as I’m getting now. I feel like I’m trapped in a care system that neither cares nor works properly.

When something like this happens it will affect people in different ways depending on their own personal circumstances. If I was not living on my own then sudden changes in my care package would not have such a deep impact as I would be cushioned to some extent by those around me. But of course I’m not in that situation and so I’m absolutely dreading losing all my regular carers in a couple of week’s time who have by now grown to anticipate my needs to such an extent that everything just works very smoothly. In the time that we have known each other we have all become friends and I think some of this can be witnessed in the photos that I have posted of our evening meals out together. Although it is true that we’ve not been fully up to strength and could have done with at least one more fully versatile team member, those that have been here have given me a degree of stability that I need. It’s going to be heartbreaking saying goodbye and right now I don’t even want to think about it.

At the moment I’m feeling completely crushed and seriously depressed. What else can go wrong for goodness sake? I can’t actually print what I think about an agency that would leave a terminally ill, highly disabled and completely vulnerable person in this terrible situation and at such a late stage in the disease because I’m not like that. But I’m sure you can imagine for yourselves! Can you imagine a hospice saying ‘we don’t want to do your care anymore’? All the worry and stress this has brought on has caused my appetite to collapse. Everything I had set out to achieve two years ago is now in ruins and it is starting to feel like my premonition of spending my last days in the company of near strangers is starting to come true. On days like this I just feel like giving up.

Mark

Bookmark and Share

Sunday, August 22nd 2010

End of the week catch up

Okay, it’s time for a bit of a catch up on the day-to-day stuff which has been rather neglected of late as I poured all my energy since leaving the hospice into migrating the blog to its new home. That project is almost complete now and the next step will be to raise the profile of the blog so that it shows up in search engines. My old blog site did very well in Google search and I’m hoping that the new one will fair just as well now that I have registered it. In the meantime it has been encouraging to see that traffic during the first full week has been quite good. It’s certainly nice to see familiar names find their way to the new site! And thank you for all the lovely comments I’ve received lately. They are always very much appreciated.

Aches and pains

I’m starting to get a lot more pain in my arms and shoulders now. In fact it’s even starting to become a problem in my legs and neck. I suspect it’s a combination of disease progression, i.e. muscle wastage, and lack of mobility. After lying in one position all night my muscles simply stiffen up to the point where it is quite painful to be handled. I get the same problem now sitting in a wheelchair all day. In fact when I think of it there is a clean split straight down the middle regarding how I spend my time i.e. 12 hours in bed (not all asleep) and 12 hours in the wheelchair. Perhaps it’s small wonder then that I’m getting so many muscular problems now. I do of course still have some passive physiotherapy exercises performed on me each day but at times it does feel like we’re fighting a losing battle. In fact because my arms have become so immobile now we are repositioning and giving them gentle exercises every couple of hours. It’s a case of three wiggles, two waggles and no woggles! In fact one of the first things you learn in physiotherapy school is to never woggle a client. Can you imagine the headlines if it ever got out: ‘Man found woggled’! smile_regular

A consequence of sitting in a forward facing wheelchair all day is that you tend to look straight ahead for long periods of time. This has the effect of 1) only seeing people as they appear in your field of view, and 2) getting a stiff neck. I’ve started noticing lately that it is becoming a bit painful at times to turn my head through 90° in either direction. Now I have to try and remember to make a concerted effort to move my head from side to side at frequent intervals to alleviate the problem.

The above problems once again show how a lack of regular movement in any particular muscle group soon leads to problems. Just think for a moment how much an able-bodied person will consciously and subconsciously move the various parts of their body during the course of a day. When I think back to all the cycling and walking, the gardening, the DIY and other physical exercises I used to do. Sigh…

One thing I have started to do recently when I’m hoisted up from the bed each morning is to use my legs to swing backwards and forwards as I push against the mattress. My carers thought I was doing it for the fun of it but I’m actually doing it for the exercise and as a last defiant gesture against an unrelenting disease. So for a few minutes each morning I can create this illusion of moving myself as I sway backwards and forwards. And yes it’s fun too! smile_regular

Care package

We’re in high summer and as usual for this time of year my care package is creaking and groaning a bit as various people in the team take their annual holidays. This time round I have the added problem of requiring double ups several times a day and this places a further burden on the care agency to allocate staff. The one person they did allocate to be a regular helper on the double ups has been off more than on lately and at the moment I seem to have an endless stream of strangers coming through the door every couple of evenings. This is far from ideal particularly as it is always at the times when my care is most personal. And to be honest I’m getting really tired of lying half naked and paralysed on my bed whilst yet another perfect stranger stares down at me!

On a far more positive note it was only through this constant stream of new faces was I introduced to a very charming young Nepalese woman who created a big impact with me from the word go with her quick learning, proactive approach to work. Here was someone who was using her initiative rather than standing around waiting to be told every little thing. In many ways she reminded me of the way Francesca used to work, particularly as both of them came to me with very little experience of working in the care industry. I guess with some people it just comes naturally. And like Francesca she has a very friendly and likeable personality that I found myself instantly warming to. As the marketing folks would like to say, she ticks all the right boxes! I’m now keeping my fingers crossed that she can join my care team on a regular basis fingerscrossed.

And lastly, at least on the subject of care, I would like to say a really big thank you to Debbie who has done so much to keep the care package running as smoothly as possible these past couple of weeks. She has amazingly worked 11 consecutive nights, in addition to all the weekday and weekend hours she has done for me, whilst covering for other staff who are on holiday. What a trooper!

A bit of an emergency!

I had a real fright last Friday morning when Ann greeted me by telling me that water was dripping through the kitchen ceiling adjacent to the strip light and pooling on the floor! I’m normally fairly sleepy first thing in the morning but with news like this I immediately pricked up my ears as the one real fear I have is being trapped and paralysed in a burning building. And as we all know water and electricity do not mix!

A quick peek in the airing cupboard directly above the kitchen revealed a wet carpet. This was traced back to a weeping valve controlled by one of the electric zone actuators. Whatever happened must have occurred during the night whilst I was sleeping. I shudder to think what could have happened if the water had found its way into the zone actuator or the strip light.

We tried contacting my local plumber but couldn’t get a response. In the end the solution was much closer to hand. The builders working just outside in the garden were able to contact a plumber they use and who subsequently turned up at the door within the hour, identified what needed to be done, went away to get some parts, drained the system down, replaced the parts, refilled the system and had everything working again by lunchtime. Although it was only one of the valves which had failed I decided to have them both replaced as they were both the same age. I figured it was only a matter of time before the other one went anyway.

* * *

And finally just before I sign off I would like to say thank you to my friends Bill and Kim from Eli Lilly who have both sent me some very nice e-mail letters lately. They were very much appreciated.

Mark

Bookmark and Share

Friday, February 26th 2010

Catching up

Okay, while I’ve got a few hours to myself and before my next carer arrives there is just time enough for a little update on what’s been happening this week. I’ve not had much sleep this past week for various reasons including problems with the conveen, and this morning waking up in the early hours with a lot of pain in my lower spine. Being so paralysed I could do very little to alleviate the pain and lay there helpless counting the minutes and hours until Ann arrived. Because I’ve had so little sleep lately I’m feeling really shattered and just don’t seem to have much energy to do anything, and hence no blog updates. Hopefully once I get a few good nights’ rest behind me I’ll be okay again.

So what’s been happening this week apart from sleep deprivation? Well on Monday I had a visit from a dietician by the name of Rebecca, who apart from bringing another load of high calorie drinks and dessert samples to try, discussed with me the problems I’m having with my reduced appetite and the difficulties I’m experiencing eating certain types of food. We reviewed how I was getting on with the ensure drinks and it was interesting to note that when I weighed myself at the beginning of the week I had actually put on two pounds in weight. I asked her what sort of calorific intake I would need and she tells me that based on my weight I would need to consume about 1600 calories a day. So as each ensure drink contains about 330 calories I would need to drink about five a day if I was going to live on them exclusively. Of course it’s not my intention to give up on solid food but the ensure drinks do take the stress out of trying to eat a large meal. So these days I’m trying to eat a little bit of lots of different things so that I can still enjoy different tastes and textures and not feel demotivated to eat because the diet has become so bland. We talked a little bit about fortifying food as well and already my carers have started adding double cream to things like cereals and drinks. At this rate I’ll be roly-poly man!

Had a problem halfway through the week with my care package when they wanted to send a male carer and complete stranger into my home to do the evening call. I only found out when I checked my e-mail and discovered the message. It’s funny how whenever the care agency has bad news they send it data in an e-mail and contact me by phone when it is good news. I ended up having something of an argument with the management about not sending people into my home who I have never met before when I am trapped helpless upstairs and alone. It has been an agreement all along that anybody new would be introduced properly and would first do some shadowing with one of my regulars. Also I have a strict stipulation of no male carers which the agency agreed to way back in 2008 and yet repeatedly try to put male carers into my care package. And to think the previous day I was saying how well things were going at the care package review with my social care manager. Obviously my new care package is not as robust as I would like it to be. It’s taken just one of my main carers to take a week’s holiday for things to start unravelling. Fortunately Ann, bless her, came to the rescue again and rearranged her evening so that she could do my evening meal. But I still ended up with an almost stranger for the last couple of hours.

Apart from that little bit of excitement not too much else this week. I did have a call yesterday afternoon from Heather, the District Nurse taking over from Anita. We’ve met before but I haven’t seen her for a few months so it was a case of running through everything that’s happened this year and just explaining recent difficulties with mobility, appetite and swallowing.

I must admit I’ll be glad to get this week over with. I feel so tired. I just don’t seem to have achieved much this week.

Mark

Bookmark and Share

Monday, February 1st 2010

My care package moves to block hours

Well I’ve managed to get through the first month of the year just about on my feet. Back at the beginning of January I wasn’t sure that was going to be possible the way my legs were acting up. The last few weeks have been a very worrying time for me as walking to and from the bedroom, bathroom, and study is about my limit and I seem to have taken up permanent residence on the upper floor of my house. Hoisting equipment has been moved into the house in readiness and at times I feel very conscious of a clock ticking above my head counting down towards a time when I can no longer stand. Frightening!

In direct response to my changing needs my care package was reviewed a few weeks ago and as I previously mentioned the decision was taken to move from four short calls a day to two blocks of extended hours. That new care plan started this morning with Vanessa working the first block which commenced at 8 AM and ran all the way through until 1:30 PM. I was then left alone for a while until the second block commenced at 4 PM with Jan, a pleasant new lady who I was first introduced to last week. She worked the first 2 1/2 hours and the remainder of the evening from 6:30 PM through until 10 PM was picked up by Debbie.

Having these extended hours has already brought a number of advantages. For instance I can start my day earlier and not waste so much time in bed. This is important to me because time is so precious and I want more time to do the things I want or need to do. It also means that I no longer have to cram in eating a lot in a short period of time. With my dwindling appetite it is becoming ever more difficult to eat normal portion sizes. However with the additional time I have been able to alter my eating strategy to ‘little but often’. And with more time to prepare food I have more options at lunchtime so today for instance I had a delicious hot jacket potato with lashings of butter and grated cheese. Yummy! Another advantage is being able to have hot drinks pretty much whenever I fancy. I found it continually frustrating throughout the winter that I would often crave a hot drink but there was nobody here to make me one. Now I can eat or drink when I actually feel hungry as opposed to eating to a schedule.

Jan is the latest addition to my team of carers and will start supporting me from this evening initially for a couple of sessions during weekdays. Now that the care package has grown from 5.5 hours/day (38.5 hours/week) to 11.5 hours/day (80.5 hours/week) I need to grow my team of carers to ensure that I have stability as well as people with the right range of skills for my ever increasing needs. I cannot afford to have a repeat of the ups and downs that seemed to have plagued me for months last year. Jan comes across as a very cheerful, fun loving person with a great sense of humour so I think we’re going to get on just fine. This evening for instance I initiated her into the fine old tradition of dunking a biscuit, passing on such useful hints and tips as depth of submersion and dwell time, before moving on to such important considerations as diameter of the biscuit vs. diameter of the mug, and consistency of biscuit! smile_regular Well these things are important. If you get it wrong and things fall apart then you’ll end up doing what Jan had to do i.e. commence salvaging operations! smile_regular

With somebody here most of the day I was able to start trialling my new MND Oxford collar. Previously when I was trialling other designs I would have to put up with any discomfort for hours because there was nobody around to take the thing off if I didn’t like it.

So there we are, my first day of almost constant care from the moment I get up in the morning to the moment I am put to bed. I’d been resisting such a high level of care for some time now as I didn’t want to feel that the care was taking over my life but more recently with everything that is going on inside me I have become far more amenable to the idea. In fact I found it quite reassuring to know that help was so close at hand if I needed it.

And finally… I received a confirmation e-mail from the secretary of my local MP to acknowledge receipt of my letter/e-mail and to say that my MP would be giving it her attention.

Mark

Bookmark and Share

Friday, January 15th 2010

Warming up

The snow is starting to thaw at last, temperatures are now up to a quite toasty 0°C or thereabouts, tarmac is starting to make a reappearance and my carers are able to start driving up to the house once again instead of leaving their cars a safe distance and walking the rest of the way. I really wish I had some pictures to post of the snow outside the house but unfortunately my complex looking camera frightens most of my carers off!

New bedroom equipment

I had a delivery from Equipment Services this afternoon whilst Vanessa was feeding me my dinner. They had come to fit a goalpost hoist system in my bedroom. It took about 30 minutes for the two guys to assemble all the pieces. As the name suggests it resembles a goalpost i.e. two uprights and a cross beam that straddles the bed. The hoist mechanism travels along the cross beam which extends out beyond one side of the bed sufficiently so that I can be hoisted out of the bed and lowered onto a glide about chair which is then rolled into the bathroom. At the moment it’s just been set up ready for when we actually need to use it. Marion, my OT, will be coming out to demonstrate it soon. So there we are the first piece of equipment ready for when my legs fail completely is already in place and depressing as it is to think of I am at the same time very grateful that Adult Services responded so quickly.

Some good news

Rachel phoned up this afternoon with the good news that funding has been approved for my new hours. The intention is that we’ll be moving from four short calls each day to 2 blocks of time: a morning/lunchtime session and an afternoon/evening session. Resourcing for this is still being looked at but the plan is to start the new hours at the start of next month. The increased hours will allow more flexibility in what I do and when I do it whilst at the same time making things safer for me. However I am being told that because the package is now quite expensive this will most likely be the last time we can increase it using day care rates. So if I start to have a need for care in the night I will probably have to consider having a live-in carer.

Planning application update

I had a visit from the planning officer today who had called round to take a look at my back garden as part of the process to determine suitability of my planning application. Not sure how much he’d see considering it was ankle deep in snow! This may or may not work to my advantage as the snow was hiding the inspection cover for the drain just off the patio (in what will end up as the wet room)! I suppose beggars can’t be choosers and I should at least be grateful that I have a second site that could potentially be built on but I just cannot work up the same enthusiasm for this second planning application because of all the disadvantages associated with it. I’m still annoyed I was refused planning permission to build on the side of my own house, and even more annoyed when I found out this week that the appeal had not even been started yet because the council had not made all the necessary documentation available until Christmas week. All efforts are now being concentrated on the second application which I’m told they hope to reach a decision on within about three weeks. I guess now they’ll wait and see what the outcome of this one is and then decide on how to appeal.

Mark

Bookmark and Share

Thursday, January 14th 2010

Preparations for reduced mobility

A sure sign that the holiday season is well and truly over is my increasing involvement via e-mails, phone calls and meetings with the healthcare professionals supporting me. Over the past few days for example I’ve been discussing hoisting equipment, looking at increasing hours on my care package, and discussing toileting issues with the district nurse!

I’m getting weaker as the weeks go by so we are trying to put things into place to prepare for the eventuality of not being able to stand up and support my own weight. I’m okay at the moment provided I don’t try to stand up for very long but I know from past experience how quickly things can suddenly change with MND. We need to make sure that we have both the right equipment and level of care in place.

I’ve been in some discussions this week with my OT and Debbie, a senior member of my care team regarding lifting and handling equipment. What’s complicated the issue is that I still don’t have my ground floor extension built with its purpose-built tracking installed in the ceiling. The disease is moving ahead regardless and I now face being more or less trapped upstairs for some months to come. What this is going to mean is that I will need special hoisting equipment in all of the rooms I’m using and that equipment will vary from room to room. So far example in the bedroom I’m being told I need a goalpost hoist which will be used to lift me out of bed and into the glide about chair. This wheeled chair will then be moved into the bathroom. A ceiling track will then be used to transfer me to my bath lift (I was quite forceful in not giving up my right to have a bath as it’s one of the few luxuries I have left). After dressing I would be moved to the study in the glide about chair and then transferred to my high-back office chair using a mobile hoist. Phew, that’s a lot of transfers! And that doesn’t even include transferring me onto the stairlift should I need/want to leave the house. And all this because the nerves controlling my leg muscles are dying. At times I really hate this disease! Anyway I’ve now been informed that the goalpost hoist and mobile hoist have been ordered so they may even arrive next week. As for the ceiling hoist in the bathroom my OT needs to speak to the grant officer to see if the cost can be added to my DFG (Disabled Facilities Grant).

I’ve had to put some words together recently in the form of an e-mail to Rachel my social care manager as a kind of justification for why I am requesting additional hours. It’s a bit unusual because I normally just have a care package review and then after describing my current state of health and level of difficulties my social care manager and I agree on what extra hours are needed and then she approaches a representative on the Continuing Care review board. What has made it even stranger this time is that the whole idea of block hours was hers. In fact at first I wasn’t too keen on it but it was only after chewing on it for a few days and then discussing it with Debbie that I slowly came round to the idea. Anyway as of today Rachel is waiting to hear back on whether funding is available. Hopefully we should know in the next few days.

I had a visit from Anita, my very cheerful district nurse this morning. It was rather timely really as I had found it very difficult to get myself into an upright position on the edge of the bed this morning whilst I was on my own and needing to visit the bathroom. Inevitably then the topic of conversation soon turned to issues around the difficulty of getting up in the night and going to the loo. She is going to arrange for me to speak to a specialist on that kind of thing so that I can be presented with the various options. Enough said! Actually today’s meeting was a bit sad as Anita has told me that she is leaving and going into teaching so this will be her last call. People don’t seem to stay in their job roles very long these days. Just as soon as you start to feel comfortable with somebody they move on.

Mark

Bookmark and Share