Silver Sufferers

Blogging for ME/CFS Awareness

Way back in 1955 there was an outbreak of M.E. at the Royal Free Hospital. It mainly affected nurses and doctors, they would have been young people back then. Now they will be pensioners, and I wonder how well they are doing now. Hopefully some will have made a recovery, but how many of them went on to become some of the 25% group who are housebound and/or bedbound?

Recent campaigns by M.E. Charities have concentrated their efforts on young people with M.E. This is a good thing, as it is a very difficult thing to live with M.E., and it is sad to see young people suffering, losing their teenage (or even younger) years to this horrible illness. It impacts on their education as well as their social life. So even those who recover have lost a part of their lives, and will have difficulty catching up on qualifications they need for the careers they wish to pursue.

But I begin to feel that older people with M.E. are being forgotten.

Even in "the prime of life" (whatever that is!) M.E. is a difficult illness to live with. It is hard to meet friends; let's face it, it's hard just to make a cuppa tea or coffee!

Last year I turned 60. I now receive my Old Age Pension. At least I will never have to fill in another IB50 form, sweat over it for weeks, and worry that I will lose my Incapacity Benefit.

In the previous few years I saw my parents becoming more and more frail, and eventually dying after some months in nursing homes. I was not able to help them in the last years they remained in their own home.

My Mother pleaded with me to go and stay with her after she had a fall, was in pain, and couldn't manage at home. I couldn't. The next day she was admitted to hospital, descended very quickly into dementia, and after a few weeks in a nursing home she died.

While my Father was in a nursing home I hardly managed to visit, as most of our energy went on trying to continue to help my Mother, and then visit her in hospital.

As an only child I felt stretched between them, unable to help either.

I am one of the lucky ones. My husband continues to care for me, to do nearly all the shopping and cooking (we gave up on the other housework other than the most basic cleaning!). Our daughters help when they can. And because of the help that I get from my family I am lucky enough to be able to enjoy the little energy I have, to take some photos, to do a bit of gardening, and currently to be staying at our caravan in Abersoch - John has left me with a large pan of delicious stew, and plenty of other easy to prepare food.

But what happens to those M.E. patients who live alone? After many years of struggling with the most basic of life's chores, as they age, how will they manage? I don't see that Social Services will be of much use - already I hear stories of how "carers" provided by them are refusing to do things that in the past they might have done, such as shopping and cooking.

We all are getting older, we read in the papers that the aging population is a time bomb, there won't be the money to look after us baby boomers. But how much worse is it for those who for years have had this damned disease? No job, so no comfortable pension, no circle of friends, no supportive partner or family for many. And as we age, those of us whose parents have looked after them may see their only support become too incapacitated themselves to help any more. So who will help them then?

Perhaps it's time for the M.E. Charities to begin to campaign for us old age pensioners with M.E.?



Sunset at Bwlchtocyn

Slugs and snails and other tales...

It's obviously that time of year... A few days ago someone came to visit this blog searching for stomping snails, and today it was chucking slugs. These creatures do seem to bring out the violent worst in gardeners! I've seen quite a lot of slugs in the back yard, so I guess it's time to bring on the nematodes. Sadly this week has got away with me, so it'll have to be next week now.

My Father is still in hospital, but they want to discharge him. We are going for a Case Conference on Tuesday afternoon. I have been trying to find out about continuing NHS care. Seems I will have to write to the strategic health authority to get a copy of the the local eligibility criteria. I hope they are a bit more helpful than the hospital concerned. Getting any information out of them is like getting blood out of a stone.

I wrote on 4th April (and it was hand delivered to the ward on that date) requesting the medical assessment for Dad's discharge. Yesterday I received a letter from the Operational Management Directorate which said "We note that you have requested information regarding your father's discharge and the Ward Manager has confirmed that you have now been given that information."

This is news to me. We haven't received ANY information. My mother had a letter some weeks ago (April 3rd), but apparently it was just a pro-forma with no details. I was very angry about it at the time, Mum is in her 80s and has age related macular degeneration, so it seems a bit pointless writing to her. I know Mum wants Dad to go back home to her, but I don't think it will be feasible unless they can arrange more or less round-the-clock care. Which seems highly unlikely.

Hospital discharge is supposed to be a process that involves the patient, their carers, and relatives. I can't say I've noticed much in the way of involvement of either Mum (Dad's primary carer), myself or John (my husband, who does his best to give some care for Mum and Dad additional to that provided by Social Services since I can't). Other than that John (at work) and I (at home) get phone calls from social workers who can't get through to Mum, probably because they call when she's out visiting Dad in the hospital.

This is what is supposed to happen according to a very helpful document from the Alzheimer's Society.

Assessment for hospital discharge

Before a person is discharged, their needs must be assessed so that any support or care services that they need can be arranged before the person leaves hospital. Any organisations that will be providing these services must be made aware of when the person is due to be discharged and when they should be visited.

If the patient’s needs have changed considerably since they were admitted to hospital, they may require a multidisciplinary assessment. This might involve the person’s consultant, nursing and ward staff, local authority staff, the person’s GP and their carer. If the patient’s needs have not changed considerably they may need a simpler assessment.

At the time of the assessment the person with dementia, their carer and/or their relatives are entitled to written information that explains:

* The health authority’s eligibility criteria for NHS continuing care
* The services that the primary care trust and the NHS trust will provide
* The services that the local authority will provide, including the likely cost of these and any welfare benefits that the person or their carer may be able to claim to help pay for them
* The NHS trust’s and local authority’s complaints procedure.



So Mum/I/John should have been sent or given various documents a while ago "at the time of the assessment". The assessment was apparently completed on April 4th, but only reached Dad's Social Worker on 17th April (probably typed up in India?). Nothing in today's post, will give it till tomorrow. Next move will probably be a phone call to PALS (Patient Advice and Liaison Services).

I am concerned that we had a very "heavy" warning from Dad's first consultant that he has something nasty in his lungs (we haven't yet managed to find out what) and that we MUST be very careful to use the alcohol wash after visiting. I hasten to add that we always did that anyway - I have worked in a bacteriology lab, admittedly many years ago. Even back in the 60s some people were concerned with emerging bacterial resistance.

John asked last week if Dad had been re-tested for this "organism that has colonised his lungs" (as the consultant put it). I was rather shocked by the response, which was along the lines of "Oh we've treated that so it's gone, we don't bother re-testing". Surely this can't be right? When we saw the first consultant he seemed to me to be saying that the infection wouldn't clear completely, and pneumonia would continue to be a danger.

I think I've blogged long enough on the worrying scary stuff for now. So here's some good news!

We make a big deal of the Grand National these days. Choose horses, lay bets, try and memorise the colours of the silks, and so on. And open a bottle of Fizz just before the race starts. I had £1 each way on five horses. John only bet on three. I couldn't keep track of which horse was where, and who had fallen, but towards the end it appeared at least two of my horses were still running.

And one of them won! And the other came third. So thanks to Silver Birch and Slim Pickings I am £52.50 better off than I would have been otherwise.

Tonight's sunset