Forum

Too many battles

Hi everyone, I’m new to this, though I have been the carer for my wife for getting on for 20 years now.

I’m increasingly finding that I seem to be spending huge amounts of time fighting, what I think are, needless battles - to give but one example: my wife was having recurring bladder spasms and expelling catheters at a fair old rate. At one time we got through 3 in 24 hours. The neuro-rehab nurse suggested that Oxybutanin would help and sent a letter to our GP requesting a prescription.

I duly collected said prescription and then found out that it was in tablet form - the problem being that my wife is now PEG fed (a tube straight into the stomach as she has lost the ability to chew and swallow) So I asked the GP for it in liquid form. I was told no, it’s too expensive you’ll have to crush the tablets and get them down the tube. Anyone who is aware of PEG tubes will know that the diameter is only a couple of mm - so that’s quite a job.

Eventually after several weeks of phoning round, trying various helpers within the NHS, I was told to talk to the Enteral Feeding team - as it is they who have most control over what goes down these tubes. So I did and the next day got a call from the GP to say that I could have patches. WHY oh WHY did they not offer those before I’d torn out the majority of what little hair I do have left - Is this just me or does anyone else have similar problems? All I wanted was medication in an appropriate form.

Hi, well no wonder you are so annoyed…they know your wife and what problems she has…so why didn`t they give her patches in the first place?

daft question I know, but I just wanted to let you know that it is right what you are saying and you are far from being unreasonable!

I am really sorry to hear how badly affected by MS, your wife is.

She is lucky to have such a loyal and caring husband.

Do you have any help to look after her?

My hubby was my sole carer for quite a while, until I insisted on us getting help in. he was dead against it, but i fought on and now I have 3 carers besdies him.

2 take me out twice a week and one of them sleeps over once a week.

Then I have the most caring, kind lady, who comes in every morning to get me up, showered etc.

it took a while for hubby to get used to it, but now really values his time to himself.

We use Direct Payments to pay for the help. it is a marvelous scheme.

Sorry if I am preaching to the already converted.

If so, then hopefully someone else in your situation might think about it.

You/they are welcome to ask me anything about it.

look after YOU too, yeh?

luv Pollx

Thanks for the reply and understanding.

We have a substantial care package - I would also call it intrusive, but without it I’d be at the ‘funny farm’ in no time flat: two carers come in 4 times daily for calls totalling over 5 hours per day. It really doesn’t leave me much time for doing anything or going anywhere. Besides most of my/our friends have disappeared over the years, so socialising is like a foreign language to me nowadays.

We’re beyond the personal grant/direct payments situation and are now funded mostly by continuing care with Social services picking up the remainder.

I’ve had a carers assessment for all the good it did - they ask such global questions like ‘is there anything you can think of you’d like?’ My aspirations have been so repressed that other than a few hours of kip I can’t think of anything - I wish that they would learn never to ask those questions and instead offer me an ‘a la carte’ menu of choices. My assessment ended with ‘there’s nothing else we can do for you.’ And that on the top of the bugger-all you do already - I’m spoilt.

Hi again, can I pick up on something you said?

a few hours kip…well why not ask for someone to sleepover once or twice a week? Then you would get that peaceful kip you desperately neede, eh? My hubby said he truly sleeps like a baby when he knows someone else is looking after me.

luv Pollx

Hi Pollx,

Thanks again for the reply, erm it isn’t that simple or even possible. Because my wife has lost the chew/swallow capacity she is having problems clearing catarh after a chest infection. I was able to arrange for the Community chest physio to see her and now have a bag/mask contraption to help open her air ways up - sometimes our bedroom resembles a scene from casualty - so the problem is during the nights when she wakes up coughing and spluttering, which then wakes me. So I have a disturbed night and she stays in bed all day dozing and catching up :slight_smile:

Care assistants just aren’t trained in these type of extra duties, along with a whole lot of other procedures I carry out - so it’s down to me. And probably some of it is of my own making - the last call of the day is 8.15 - 10.00 pm and I just need a bit of time after they’ve gone to unwind before turning in for the night - and more often than not listen to Tim Minchims carers anthem ‘Some people have it worse than I’

Hi. I don’t know if you have resolved your problems re: Oxybutinin but if not you might find it helpful to have it in “patch” form. It is called Kentera and it is an Oxybutinin transdermal patch applied twice a week. It has many advantages over pill form, not least that does dry the mouth as much as the pills.

Hope it helps.

Peter

Hi Peter.

Many thanks for the knowledge. We did get patches but not after an enormous amount of totally unnecessary hassle. I’m quite sure that to GP’s they are a known entity and could have been offered from the start. Hence my level of frustration.

I suspect that between us we carers have an enormous amount of useful bits of knowledge, that this type of forum allows us to pool - but only if folk know that it exists, at the time I didn’t.

Hi there all on this thread.

I’m not going to be helpful here but I just wanted to say a few heartfelt words to you all by way of ‘thank yous’. My husband was diagnosed last summer with PPMS. He has early symptoms of digestive issues, bowel, bladder and erm…wedding tackle issues! I work full time and have family and don’t get on to this forum too often. However, when I do get on here, I always breathe a sigh of relief to find and know that others out there are a step ahead and are willing to offer such great advice when they could so easily not bother.

I’m now already prepared for the Oxybutinin patch battle, should it arise and although it may later change with this govenrment, I am aware of what support is available from carers and the extent (or lack of extent) to which they can support.

I like to have at least a little idea of what may lay ahead at a time when medical professionals can only give guarded, general, unhelpful and fague indications of ‘decline’. it sounds like I’m not alone with that. Your posts here are so useful and reassuring. I hope when the dark days come and I get through them, I will be able to join you in passing on some words of support and wisdom to others.

Thank you!