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…


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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.


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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.


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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.


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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.


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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.


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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.


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Thursday, January 7th 2010

Snow, and lots of it!

Basingstoke is knee deep in snow – quite literally. We’ve had snow for a couple of days now although today thankfully it has stopped. Nevertheless with the gritting lorries concentrating only on the main roads getting in and out of the housing estates is a challenge at best. Predictably it has brought chaos to my care package. The care agency is struggling with a significantly reduced workforce, and although I’m classed as a high priority for them, getting carers to me is becoming a logistical nightmare made worse by the fact that only two of my team of five main carers are currently available. Ann, bless her, has proved highly reliable and committed to my care and has for the past two days walked the one hour long distance to my house in subzero temperatures. Vanessa has also proved flexible by stepping in to cover the lunchtime calls. And because there is obviously a concern for the safety of the carers as well as clients, meals and times are being shifted around to suit. So for instance I’m currently having my evening meal early in the afternoon and instead of having early and late PM calls I’m just having a short call for a snack and then straight to bed. Unfortunately these end of day calls are being filled by whoever they have available and for the past couple of days it has been with people outside of my care package. Considering the high degree of personal care I have now it is quite uncomfortable dealing with people I hardly know and having to explain every single thing to them. All I can say to all this snow is hurry up and thaw! It might look like a picture postcard outside especially with the beautiful clear blue sky we had this morning and the sun shining down on crisp white trees, but it is playing havoc with my daily routines.


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Homecare – the first year

A year ago last week the life of independence that I had always known began to draw to a close. The disease had reached a point where performing physical tasks such as cooking a meal for myself, or keeping the house clean, had become too difficult and energy consuming to continue. A care manager was assigned to me, my needs identified, and a care agency was called in to look after me. In the space of just one year my needs have considerably escalated to the point where there is little I can still do for myself. In those 12 months I have lost the ability to prepare any kind of food for myself, to wash and shave, dress and undress, or even to feed myself. Consequently my care package has grown from 14 hours/week to 38 1/2 hours/week, and from two calls a day to four calls a day, to keep up with it.

This first year has been a bit of a rollercoaster ride with its ups and downs of one moment perfect stability and the next complete chaos. I was checking back through my records the other day and I was perhaps little surprised to find that I have so far had a total of 25 carers looking after me. So much for the stability and continuity I was promised back at the beginning when in my naiveté I assumed that the people I had would always be with me. To some degree that is of course true as Francesca followed shortly afterwards by Ann have remained completely loyal to me and have gone on to become good friends as well.

The care industry can be a strange beast though. People don’t seem to stay in one place for very long and will swap and change agencies depending on where the work and money lies. Not so different from any other you might think. However carers can often work with zero hour contracts which enables agencies to dispense with staff at a moment’s notice if the work dries up. Of course it goes the other way as well meaning that a carer can just walk out if they find a better deal. So an environment is created which instils little in the way of loyalty. For the people like me on the receiving end of care it can be very disruptive. Just as you get to know a carer and develop a good working relationship and start to feel comfortable with them, they leave. It’s happened to me twice now, the first time was less than three months after I started having care when I lost my main carer when she decided to change over to nights. That was bad enough and a little upsetting but not the disaster it could have been as I had yet to transition to having my personal care done. The second time it happened was in June this year when I lost Alison. That was a real hammer blow that took about three months before it started showing signs of improvement. Alison had a wealth of experience, a good range of skills, experience of caring for people with MND, and a really friendly personality that I warmed to instantly. I still miss her even now and it has been my experience that finding such people that tick all the boxes are very rare indeed. Fortunately in recent weeks I have come across one such person, and Kim, like my other lovely carers, is proving invaluable with her wide range of skills and friendly nature.

Ann and Francesca have been simply amazing. Time and again they have gone out of their way to do nice things for me; special little treats that go beyond what is expected of a carer. Ann for instance is always treating me to cakes, collects my prescription every month and planted flowers in the containers by the front door so that there was a lovely splash of colour all through the summer. Francesca is very thoughtful and creative when preparing my meals and has been of tremendous help when it comes to people’s birthdays and there has been a need to shop for gifts and cards and have everything wrapped up and written out. And of course it has been Francesca that has been taking me out regularly since the spring. Like I say these are people that I treat as friends or even extended family. For instance at the weekends Francesca and I will often have breakfast together and chat away merrily. For me it is a chance to socialise and not feel so isolated which is what can happen now that I am removed from the workplace. I cannot stress too much the importance of having the right type of carers, particularly when living alone. MND is a terrible disease, no doubt about that, but even so it is possible to have a reasonable quality of life if you have a good support network.

In the year I’ve been having care I’ve got pretty good at spotting a good carer from a mediocre one fairly quickly. Fortunately I’ve not had any truly bad ones although I’ve had my fair share of mediocre ones; those who can’t cook, do a wet shave, make a bed properly, keep the kitchen clean, brush teeth or wash a person properly. There have also been those who seem to be short on common sense i.e. trying to light gas hobs through a glass plate cover, those who are dangerous i.e. hitting me in the teeth with a shower head, and those who are negligent i.e. leaving the front door wide open at night! By contrast the outstanding carers shine from the moment you meet them. These are the people that are capable of using their initiative and their common sense, of keeping a careful eye on their client and knowing when and how to intervene, they are thoughtful and considerate, have a wealth of experience which enables them to work without constant intervention so that you can just sit back and relax safe in the knowledge that things are getting done properly.

In one respect though I am lucky because I do have some say in who my carers are. This is not so with all agencies of course and sometimes you have to have who you’re given whether you like them or not. The agency I am with does to some degree try to accommodate me, so to ensure things run the way I want them to I work closely with the home care manager and at times have had a fair degree of input into shaping the care package. This has been how I’ve got all my best carers – by badgering the staff until they give in! If I didn’t I’d be surrounded by people who perhaps would not be suitable and feeling quite unhappy.

MND is a very complex disease and as such can place great demands on those who are caring for you. My care package had grown to a point where the three main carers I have are simply inadequate to cover the hours required or to provide cover in times of sickness or holidays. That much has been painfully obvious for the past few months so there is a pressing need to identify at least two more main carers so that we can lighten the load for the others and smooth out any disruptions. MND is also, thankfully, not that common so it’s no surprise really when a lot of the carers who come to me don’t even know what it is or even how it affects me. For this reason I think there is a real need for an MND awareness day course for carers, something which my own local hospice has hinted at doing.

So we end the first year of homecare with a care package that is showing signs of recovery after a bumpy four months. There are still a few problems to sort out particularly now that I have just gained a fourth call at the end of the day to put me to bed, which at the time of writing is still not in place as the agency is struggling to find people with enough availability. But hopefully we’ll have these problems ironed out soon. In the past year I have learnt how fragile my care package can be and how easily it is for things to go bad if even just one main carer is lost. As my needs continue to escalate, stability and consistency become ever more important. Fingers crossed that things continue to improve all the way down to Christmas.


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Homecare – the first hundred days

Over the past few months I have started to make the slow transition from a life of independence to one of dependence. I suppose truthfully though that began right back at the beginning of last year when I started to get help with my weekly groceries. It’s just that now it has become a bit more pervasive. Being a very independent person and far more happy helping others I found the whole idea of having ongoing professional care a frightening/depressing prospect as it signalled another step in the progression of the disease, and for this reason it’s one I’ve fought hard to postpone through pure single-minded determination for as long as possible.

I was also keen to delay it because I knew it would inevitably change my lifestyle and would restrict my choices. Enquiries with Adult Services (part of the County Council) suggested that their idea of providing help with my meals, for instance, was little more than a tie-in with a local company providing what were essentially ‘meals on wheels’ i.e. a van would deliver a set number of boxes that could be kept in the refrigerator and then heated up in a microwave as required. If I was unable to heat the meals up myself then someone would be sent round to provide that service. I guess that was the ‘care’ element. Well all of this sounded rather depressing and I certainly didn’t want to spend the last of my days living out of cardboard boxes. I wanted more choice and flexibility and of course help with other things. Besides, if I was capable of heating microwave meals up myself then I wouldn’t really need them anyway as I could just as easily order from my local supermarket and have it delivered. I think they were missing the point.

I’ve already written about the events leading up to my need for care so there’s really no need to repeat them here. Basically the remainder of this post is a direct follow up to my blog article The tipping point posted in early October last year and picks up the following day when my emergency home care package started. I say emergency because although my Social Worker had been successful in assigning me a care agency, they had at that time insufficient capacity to meet all the hours that I would need. Fortunately they were in the process of recruiting a new carer and I was told that she was going to be my main carer whilst the young girl assigned to me for the first two weeks would fill in the remaining hours once things got underway. But before any carers were allowed to work in my house it needed a risk assessment to ensure that it was a safe environment. I was also required to answer a whole raft of personal health questions so that my care plan could be drawn up. All of this was done on a rather rushed basis just hours ahead of my carer calling that evening.

It’s a bit of a strange feeling waiting for a complete stranger to call and cook your dinner. At least until you get to know them. Never having been in a situation where I needed to be cared for I had no real idea of what to expect. Fortunately my first exposure to the world of care was a positive experience and Hayley, the young girl who arrived at my door, was very pleasant, chatty and eager to please. We got on well together from the word go and I was enormously grateful to be able to just sit back, relax and wait whilst my evening meal was prepared. No longer did I have to struggle to reach food in overhead cupboards or try and find the strength to open packaging or run the risk of dropping saucepans or baking trays. Finally I would be able to sit down at the dining table with enough energy to actually eat my dinner instead of feeling exhausted from all the physical exertion of preparing it. Bliss!

Due to the limited resources available during those first couple of weeks, an evening meal and preparation of a lunchtime snack for the following day were just about all that could be squeezed into my 45 minute time slots which could only be provided during weekdays. I was struggling on by myself during the weekends. In truth this was just as much a conscious decision on my part to try and ease myself into adapting to a life of care rather then go abruptly from one lifestyle to another. It was a case of experimenting to try and find the right balance between saving precious time and energy, whilst preserving as much independence, dignity and self-worth as possible. Nevertheless the time and energy that Hayley was saving me soon started to show real benefits.

On the Friday before the full care package was due to start I was given the opportunity by my Social Worker to meet with Ria, the young woman who would be my main carer. The informal chat and tour of the house went well and instinctively I knew that she would be a good choice to care for me. So the following Monday Ria commenced work as my main carer. From the start she came across as someone competent, caring, very organised and professional in her approach to looking after me (and the house) and we soon became friends. I felt immensely relieved that the burden of much of the day-to-day physical workload was now being offloaded leaving me to use what energy I did have left on more important things.

Ria spoilt me. Suddenly I had far more choice at meal times again as I no longer had to think about how much energy would be expended in preparing it, and so for the first time in what seemed an age I could, for example, have cooked breakfasts again (in addition to cereals and fruit, so essentially a double breakfast). A simple thing perhaps but when you don’t have it for a long time you appreciate it a lot more. Amazingly I found (for the first time since being diagnosed) that I actually gained a little weight – a real victory with this disease.

With the extra resources available I was able to start introducing weekend care although initially this would only be the morning sessions as I was at that time self-funding all my care and had to keep a close eye on escalating costs (quite frightening when you look at the annual cost). Another reason was that neither of my two carers were available for weekend evenings and I was loath to introduce a third carer just for two sessions. However, it wasn’t that long before my declining muscular strength and energy levels, coupled with a successful funding application meant that I was able to increase the hours of care available. So I moved from having twelve 45 minute sessions to the fourteen 1-hour sessions I have now. The additional 15 minutes made a big difference particularly on the evening sessions as it gave me more flexibility on what I could have cooked, plus it would allow me longer to eat it – very important as declining strength meant that it was taking an increasing amount of time for me to work my way through a meal. My arms just get so tired from fighting the encroaching paralysis.

The additional sessions also meant bringing in a third carer to cover weekends and rest days for my other carers. And for a little while everything appeared to be running smoothly and I began to feel settled. But as I’ve since discovered nothing seems to stay that way for long in the care sector (or at least from own experiences) and within a matter of a couple of months I had lost both Hayley and Ria (in whom I was very sad to see go). In my naivety I had assumed that once I had been assigned a carer she would be with me for as long as I needed her. Unfortunately it doesn’t always work that way. The care agencies are exactly that – agencies, and therefore can recruit or shed staff at a moment’s notice in response to demand. So of course in an environment like this it can work both ways meaning that staff can switch agencies rapidly if a more appealing position crops up. That’s not to say it’s what happened here but is just one possible reason. Another is that staff can sometimes switch from working day shifts in home care to night shifts in hospitals and hospices.

And so for a while my care package was in disarray as I went through an endless stream of different carers, with at times as many as six in a single week. I began to lose track of it all and was often not even sure who was going to be turning up at the door, or even when. I felt a bit depressed as more often than not the people being sent were not ‘ideal’ for one reason or another. I think half the battle is finding people you can gel with particularly when you are looking at personal care which was something I had to take into consideration as a future need. Unfortunately a lot of the people being sent just didn’t seem to fit into that category.

I learnt an important lesson when I lost my main carer – do not put all your eggs in one basket. When she left I lost 70% of my care package in one fell swoop. I was determined to try and not let it happen again. I felt the only way to ensure I got what I wanted was to take a more active role in defining my care needs, and so with the help of the home care manager, in whom I’d found a sympathetic ear, and the willingness of the carers I’d identified as ideal candidates, things began to improve in leaps and bounds. The main change I’d made was to request two main carers instead of one, and to identify several backups to cover for holidays and sickness.

On the week leading up to Christmas I had a double stroke of luck. The agency sent along a new carer, a very pretty young girl called Francesca. She came across as being full of life with lots of energy – all the things I’m not these days, hehe. One thing we did share in common however was a sense of humour and as time is becoming ever more precious to me these days I want to spend as much of it as possible around people who can make me feel happy. Francesca had that ability to make our time together such fun that the hour just seemed to fly by. And like Ria, she seemed very organised, efficient and capable of working without constant supervision as well as having the ability to use her own initiative. Instinctively I knew there and then that she was exactly the sort of person I was looking for; the only catch being that she would initially only be available weekends. Fortunately for me she hadn’t been working at the agency for very long and so didn’t yet have any regular clients. I very quickly rectified that!

I was also able to negotiate the availability of Alison, a lovely carer whom I had met a couple of times back in November and had gotten along with very well from the moment she walked through the door. She had such a sparkling and warm personality that within moments we were chatting away like we’d known each other for a lot longer – surely a good sign. At that time though I already had a main carer but Alison impressed me so much that I simply had to find a way to have her added to my care plan and so I made a mental note for future reference and requested to have her added as a backup in the meantime. With my circumstances now changed I was able to request (or beg if necessary) that she become one of my two main carers. Of course it’s not always that easy as established carers will already have built up a client list and so may not have the availability. I was very fortunate because Alison has pulled out all the stops to try and accommodate me. Oh yes, something else I learnt about Alison that made her a ‘must have’ is that she’s had experience of caring for people with MND in the past which will be a distinct advantage. Up to this point most of the carers I’d spoken to either had no experience of the disease or were not even too sure what it was. That’s not a total surprise as MND is an uncommon disease.

So here I am having just reached the end of my first hundred days with professional care. I can’t believe it’s been that long already. It’s been a bit of a bumpy ride, particularly with the loss of my main carer, the high number of temporary carers coming and going, and a number of missed calls in the early days that left me to fend for myself (but soon stopped after my Social Worker strongly emphasised the need to maintain continuity of care). But now though I am pleased to say that everything seems to be moving in the right direction and that the hours that my two main carers can contribute has been steadily increasing. There are still a few areas of the care package that need to be improved but in general it’s a lot better than a month ago and so consequently I feel a lot more relaxed. I’ve learnt that getting care is only half the battle, and that getting the right care is just as important.

I feel extremely lucky that I have two of the loveliest people I could hope to meet, both with warm and friendly personalities, kind hearts, a great sense of humour and a strong desire to take good care of me. To be honest I look at them as friends first who just happen to be looking after me as well. As they get to know me more they’re starting to anticipate my needs so I can just sit back and not worry. I really do feel that in situations like this where you are dealing with an escalating need that will one day be complete dependence it is absolutely essential to find people you are completely compatible with. Another reason is because I’ll be spending more time with them then my own family. And already it has started; they are becoming part of my social life as mealtimes become an opportunity to break out of the isolated existence I have these days and be able to sit and chat over a coffee or even a shared breakfast. In fact despite my initial reservations about accepting care I actually really look forward to them calling and often wish they would stay longer, and quite often they do arrive early and/or stay late. And they spoil me too with specially prepared treats at mealtimes and even little gifts. Once the warmer weather is here we’ll try and arrange a few social events to get me out of the house. I’m looking forward to that too.

Are there any drawbacks to professional care? Well at times I suppose there is the feeling of living to a fairly rigid schedule and having to plan ahead if I want to go out, both of which mean giving up some spontaneity. But truthfully these are small gripes and in any case as the disease progresses I won’t be travelling far anyway, certainly not by myself.

Given the experience I’ve had so far with homecare I suppose my one fear is that ‘the good times’ I’m currently experiencing could all come to an end one day and I’ll be back to square one surrounded by unfamiliar faces. Changing carers later on when the disease has reached an advanced stage and a high level of personal care is required would be much more disruptive. My hope is that my new found care-friends will both stay with me for the remainder of my journey. My gut feeling is that they will.


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