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.

Mark

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