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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2 Responses to Thursday, September 30th 2010

  1. Margaret says:

    Hello Mark , I quite often read your blog , usually in the evening when my husband was sleeping, and I had a bit of time to myself. He died last week of MND, and I feel desperately sorry for the predicament you find yourself in with your care package being withdrawn. I looked after my husband on my own for over 3 years. We had to have 2 carers coming in twice a day from july this year as he was just not able to move and I couldn`t manage him on my own anymore. . I have NVQ`s in social care myself, so I know what I`m doing, and I realised that there would be a large pool of people coming in, as apart from everything else people go on holiday, off sick etc, but I insisted that there should always be one person who knew my husband and knew the routine, as I didn`t want to be explaining everything on every call, and I didn`t want him being hauled about by people who didn`t know what they were doing, as my husband had a lot of pain especially in his shoulders.They did comply with this, but I found one or two of the girls were a bit on the small thin side and struggled with my husband who was a big man, but completely paralysed. . I know from what you`ve said that you are a private person and you don`t want someone in your home all the time, but it might be a good thing for you especially if you get someone for 3 months at a time, as she will be the person who knows your routine, and be able to direct any other carers that come in . In my experience people who do jobs like that are very caring people , but its pot luck whether you are going to like them or not. I don`t know what your house is like , but if there is a room that could be turned into a sitting room for her then you would both have your own`space` You seem to be a determined person with a zest for life, so don`t let things get you down. Its another change and you will adapt. I wish you all the best. Margaret

    • mndals says:

      Hello Margaret,

      I am so very sorry to hear of your loss. I know the stock answer that people say in these situations is ‘at least they are at peace now and are no longer suffering’, and although it is said with sincerity it can of course never make up for the loss or the pain felt by those left behind. I do hope that you have many happy memories to look back on and cherish and have a loving family to help you through this difficult time.

      Thank you for taking the time to read my blog and for your kind words of concern and advice. Much appreciated.

      Best wishes


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