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.

Mark

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