The tipping point

“A slow gradual change that becomes irreversible and then proceeds with gathering pace”.

I recently wrote about all the problems I’ve been experiencing lately and how they have started to cut into my core activities of washing, dressing and feeding. That steady deterioration has continued to the point where I now feel I have reached a tipping point. Over the past week or so I’ve experienced an ever increasing series of episodes of weakness and paralysis in my hands and shoulders. I couldn’t even find the strength a few days ago to make a cup of coffee and I’ve now lost the ability to raise a drink to my lips. I’ve struggled badly with just trying to get dressed by myself. I’ve had occasions whereby I’ve been forced to walk around the house half undressed because my hands refuse to co-operate with buttons or zips, or because my arms are just too weak. I’ve never felt so helpless. I’m finding that tasks are taking an increasing amount of time to perform and are consuming much of my energy leaving me feeling very weak afterwards and just wanting to sit down and ‘recharge’. At times it just feels like my life energy is slowly draining away, and I suppose in a sense that is exactly what is happening. I am starting to look back at each day and wonder just what I have achieved apart from dressing and preparing meals. So much valuable time is now being lost. Between an increasing paralysis, constant feelings of exhaustion and time just seeming to go nowhere, they have all collectively contributed to my hastened need for care.

I do not believe that the disease has speeded up. I believe the thinking is that the speed throughout the disease remains constant although of course varies from one person to another. I just think that this is an accumulative effect of so much muscle tissue wasting away resulting in weakness and so many nerve cells either dying or dead leading to paralysis. Eventually you get to a point whereby there isn’t enough strength or movement left to perform a task…hence tipping point.

I need to start thinking of my available strength each day in terms of an ‘energy budget’. I only have so much available so how do I best utilise it to maximise my quality of life? I’ve been cutting into that budget pretty deeply lately and it has at times meant almost not being able to get dressed or make something to eat. In fact I’ve recently discovered now that we are into autumnal weather that temperature is also starting to have an affect on me. I went out for a short walk the other morning and when I came back my hands were so unresponsive (due to the cold) that I had great trouble just picking up the cordless phone and accessing a message left on the answer phone.

I had hoped to be able to get through a whole year since diagnosis all by myself and although I am only just over four weeks away from doing so I feel that I cannot take the chance on holding out another month by myself in case the paralysis episodes become permanent. It takes time to put a care package in place which is why I already made a request for care some weeks ago.

So it was fortunate that last week I had a visit from a doctor based at the local hospice whom I’ve been keeping in contact with on a monthly basis. She’s a consultant in palliative care medicine and I first came to her attention early this year through my GP via one of their regular meetings. In all my dealings so far with her I’ve found her to be very sympathetic and supportive to my needs and with a true understanding of what it must be like trying to live with a life limiting illness. In other words exactly the kind of person you would hope to find in palliative care. Her visit coincided with a particularly bad spell I was having and so she was able to see first hand some of the difficulties I’ve been under. I suppose coming to the door wearing not much more then a smile kind of says that maybe something is not quite right here, hehe..

To her credit she reacted very quickly to the change in my circumstances and by the end of the day had emailed me with the steps she had put in place. The intention was to get things moving on the application for continuing care and whilst this was being processed to get some emergency care in place by the weekend. She did stress however that acceptance criteria for continuing care were quite strict and it was currently very difficult to get any funding from the NHS. But it was still important to get things underway and even if the application failed then it would be easier to re-apply once circumstances changed.

The next morning I had a visit from a very pleasant district nurse who called to assess me for continuing care. We discussed all the disabilities I’d been encountering and how the disease had been progressing. After scanning down the assessment form she explained that my current needs would be classed as social rather then health. So for example being paralysed and unable to prepare or eat food by yourself is a social need. On the other hand if my throat muscles were so weak that there was a chance that food might get stuck and block the airways and therefore would require a nurse on hand to suction the food out then this would be classed as a health need. I can understand that but even I know that withholding food and water will soon kill you and that therefore dying from starvation/dehydration is a health risk!

The nurse left (after first being kind enough to prepare a midday snack for me) promising that she would try to get some care in place via a Rapid Response team by the end of the day. I was very grateful to hear this as I was experiencing another bad day and couldn’t do much myself. That afternoon I got a phone call from her to say that the NHS were refusing to fund any care for me and that my case was being passed over to Social Services. Later that afternoon I was contacted by Social Services equivalent of the Rapid Response team. They began by asking me to explain in my own words the difficulties I was having (despite getting all that information from the District Nurse). No sooner was this out of the way and they launched into a series of questions relating to finance and having a financial assessment officer call and assess my ability to pay for any care I receive. They asked about my level of savings and because they exceeded a certain level immediately told me that I would have to pay the full cost of any care I wanted (currently £14.50/hour) because I didn’t qualify for help (something which I’d heard a lot since I finished work and had started to look into what help would be available). By this time I had grown tired of their money-centric approach and I’m afraid I got into a disagreement with them over their attitude and approach to assisting someone who has an urgent need for help and is terminally ill. Never once did they talk about any care that would be provided quickly – it was all about money and having already had a bad week and needing some help as soon as possible found their entire approach to be unsympathetic. I tried to stress to them that I had a life limiting highly destructive neurological disease that was paralysing me, that I lived alone and had no help, that I had virtually no income and was living off my savings to pay all my bills etc. and that I had a fairly urgent need for some basic help with eating. Needles to say that it all fell on deaf ears and consequently I didn’t get any assistance from them. I didn’t like the idea of effectively being blackmailed when the whole idea was to get something in place on an emergency basis. I felt they had their priorities wrong. Clearly money still takes precedence over easing suffering. All I did manage to get out of them was a list of care agencies that they dealt with themselves and to be told that if I went private it could work out slightly cheaper (presumably then Social Services add their own mark-up to cover the costs of acting as a go-between).

By this time I felt thoroughly deflated and just couldn’t face the prospect of rushing around myself trying to sort out which was a good agency and which wasn’t. I had enough on my mind without having this extra burden. I decided that I would seek advice from my palliative care doctor as she’d already asked me to contact her if there were problems. Unfortunately I had to get through the weekend first. Thankfully my friend Robin was on hand to prepare some food which made life a bit easier and helped conserve some energy.

I found a far more sympathetic ear in the folks at the hospice and soon my palliative care doctor was putting things into motion. She arranged to send out their social worker who turned up that afternoon to advise me on my options having dealt with similar situations in the past. She actually works for Macmillan Nurses (the people who cared for my mother when she had cancer) and is a sort of bridge between Social Services and the Hospice. She was very friendly and more then willing to do all the leg work in setting up a care package tailored to my needs. We discussed the sort of things that I would need help with and which would give me the most benefit in terms of saving me time and energy. She was very candid with me and said that she felt that at this time I would not get help from the NHS with my care and that I would have to self-fund my care. However she also said that in the meantime they would be building a case for continuing care and that this would start next week with a case conference which I and various health care professionals involved in my care would meet up to discuss ongoing care.

The following day (today) I had some feedback from my social worker at the hospice. She’d been able to find a care agency with some spare capacity that would fit my current needs and would involve two lady carers who would split the workload. Unfortunately though one of them (the main one I believe) was not available to start until later in the month so in the meantime (starting tomorrow) I will be getting some emergency care (from the second lady) but nowhere near as much as the full package has specified. And I will have an opportunity to meet my main carer before she starts. At least now I can rest a little knowing that I don’t have all this to arrange.

And so it begins…a gradual transition from a life of independence to one of dependence. I’ve fought hard to stay independent and maintain my dignity but of course I always knew that eventually I would loose that fight just like all the others. It is nonetheless a significant moment for me as I know that (with the exception of a medical miracle) once I get onto the care treadmill I’ll never leave it and just like the progression of the disease itself the amount of care I receive will only increase with time. However, as far as I’m concerned the idea at the moment is to just relinquish enough tasks to make life a bit easier and not to be totally taken over. I’m still fighting it! I’m hoping that with the addition of some care it will give me back some of the time and energy I have been expending lately so that I can do more productive things and elevate my quality of life which has fallen a bit recently. Needles to say really that I will return to this subject in more detail at a later stage when things have been up and running a while.

Mark

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