I am so dreadfully, dreadfully beyond tired at having to fight seemingly everyone for even the most basic of necessities, and the interference in our family life that we have to endure because of my father’s condition. Is this the same for everyone? How can things be so, so difficult, always?
We approached Social Services with regard to a break given that my mother and I (primarily me) have been looking after my father with only one week’s respite since he became ill in 2007. Unusually, I know, our plan was to go to the Isle of Wight with my mother and I staying in a hotel and my father sleeping in a nursing home, having his breakfast (and poss. evening meal depending on the time they eat) and morning ablutions there and then us picking him up so we could all spend the together day so that we could have a family holiday but with me being able to have the utter luxury of having unbroken sleep for the whole week and not having to cook, or do his endless laundry (he is incontinent) which would be a holiday in itself!
We have found a hotel and a nursing home and were just waiting for the funds to be officially released before we booked everything and, of course, time is getting on if we want to go before the autumn. My father’s Care Manager came back from her week’s holiday abroad in the sun with her family and seemingly her first job was to ruin our plans for our holiday – thank you! It seems that although there is the money for Mummy and I, our County Council have a limit as to how much they will pay for a respite bed for Daddy and the I-O-W nursing home fees exceed that so they won't pay though they have said he can stay at a nursing home where we live - how very good of them! How is that anything like any kind of a family holiday for him? He would be as badly behaved and aggressive as he is in hospital when he is out of his own home, his routine, and unable to see me, and we would get back to find that we weren't considered able to cope with him any more and that they were keeping him in the nursing home. Anyway, that won't happen as we won't be going - it's a family holiday, with Social Services paying for all of it or we aren't going at all, there simply isn't any other way. How could we enjoy even a minute of it knowing how desperately unhappy and upset he would be by it all if we left him, and what little of him there would be left when we got back?
Daddy's Care Manager - so blinkin' ill educated that she calls it the Ilse of White - her spelling, and sometimes not even with capital letters, I kid you not, even though she actually lives nearby and must see road signs daily! – and it is this person who is actually saying that she thinks we wouldn't get a proper break if we take him with us. How dare she even begin to presume to tell me what I will do with my life and my holiday - I could scream - and it is such a turnaround when everything so far has been about Daddy and not a care for us like the five months we were left without even one day of respite when he first came back home to live with us (after eight months in a nursing home) and yet now he doesn't matter any more than a dog to be put in a kennel or a piece of left luggage to be just dumped without any thought in a strange place, with strange people, totally bewildered and unable to understand and then left there for a week.
We have even had to scale down the time he spends at the Alzheimer's Day Centre as he starts to get anxious at lunchtime and wants to come home to see me. Being with me is all he wants in the world so how cruel would just leaving him be? So, no holiday, and I was so looking forward to it - I don't mind any of my time with him, I just need some proper sleep and the laundry break would be extra bliss but I don't need a break from him not that anyone bothers to ask me something as basic as what I want, and it would just be awful for me; we would be lucky if we even got there before I would be wanting to come straight home again, and it is, after all, my choice not theirs.
Maybe, if it is absolutely necessary, we could pay the difference between what the County Council will pay and what the nursing home needs. I was careful when I chose one because of the safety issues such as bed rails etc. so I can't change which home we put him in so there might not be another way than to pay. I have a very small amount of savings – very small, given the Government pays me the princely sum of 57p an hour for my twenty-four hour a day care of my father – which I could use but it is so wrong that we can't get something as basic a need as this.
It’s not like many people will have asked for such an arrangement, we haven’t had more than a week’s break in five years, and, realistically, this will probably be his last holiday with us as, given the progress of the disease, I can’t see him being able to go away like this next year so why can’t they show some basic decency and let us have the money? This is the same County Council who wasted £250 million of taxpayers money, in one financial year, on respite care beds that were never used but can’t find what £300 or £400 for an sick old man to be with his family?
Aricept and Memantine.
The latest scientific research (published in “The New England Journal of Medicine” in March, 2012) suggests that Aricept should be continued for as long as possible with Memantine being added to see if it works or not, but definitely keeping the Aricept. NICE guidelines are that once the patient reaches the severe stages, Memantine should be given instead and Aricept withdrawn. I truly don’t see why, just because NICE haven’t bothered to catch up with the latest research (if I’ve read it then they can!), that my father should not have the drugs he needs but, having written to my father’s psychiatrist to ask for him to be able to keep the Aricept and have Memantine added for maybe a six month trial period to see if it helped him, as, obviously, his needs are paramount, the psychiatrist, having never even met my father, decided that the NICE guidelines have to be followed to the letter and he will have the Aricept stopped once he starts the Memantine, no matter how wrong that is.
Having spoken to our G.P. about the possibility of having one or the other drug on a private prescription, all he was concerned about was what how prescribing anything privately would impact on him – hello, what about the patient? – so my father can have the Aricept for as long as I can convince the Memory Team that he isn’t in the severe range (which he probably already is) and, in the meantime, he can’t have the Memantine which might help him, even if we are willing to pay for whatever is necessary; we can’t do more than that – what more do these people want?
Daddy needs more absorbent pads. The daytime ones take 800 ml which are fine because he still goes to the loo in the day, not that he does much, but under his own steam and he will say when he needs to go but they are way too light for night use. He seems to do most of his wee-ing at about 5 a.m. and it's a lot - we now have three Kylie's on the bed; a big one (with wings) and two (without) on the sides - the bed is wet every night and so is he which must be very upsetting for him; to wake up in such a mess when he has no idea why. I have been experimenting with three different much more absorbent types that each hold 2200 ml which are, obviously, much better though he still wets the bed but it is much less to deal with. Given that the pads are £100+ a box, I thought I would ask the Continence Service if they had an equivalent or would pay for the ones we decided on. It's such a simple thing you would think, wouldn't you? You ring up and tell them which ones you need and they will or they won't pay for them, or they have something similar which you can have - oh no!
Firstly, rather than ringing the Continence people – the experts in that field - you have to ring the District Nurse who then wants to come to do an assessment, why when we had the assessment years ago when we first needed pads? They then ring the Continence people for advice and now a Continence Nurse Specialist AND the District Nurse have to come and see Daddy. Why? 'Seeing' him achieves nothing - he can't tell them anything, he can't change the time he pees, he isn't going to do it in front of them so what purpose does it serve? Why does the District Nurse have to come too - as they obviously are not the experts, they serve even less purpose especially if the Continence Nurse is coming anyway. Two highly paid professionals insisting on seeing one old man who has no knowledge of anything they are going to talk about. What do they think - that he doesn't really exist or he doesn't need pads and we have a thriving black market activity selling the pads they are giving us on eBay? It's bizarre and I hate it, hate, hate, hate, being shoved into doing ridiculous nonsensical things just to be able to get something really simple done. I don't want a lecture about taking him to the toilet every half hour - pointless - restricting his fluid - not going to because of UTI's - etc., all I want are the pads for him and I shouldn't have to jump through hoops or have these people insisting on coming to our house, mob handed, in order to get them. When I asked the Continence Nurse why she had to see him to make a report, she said "oh well, I haven't seen him for a couple of years" - so blinkin' what, and the last time she was here, she was so late for her appointment that he was having lunch and she commented on what a nice filling lunch it looked like as I took it through to him - not her place to say anything about that but I bet it got put in her report somewhere – poky nosed gits!
I truly don't mind any aspect of the actual looking after and caring for Daddy; I wouldn’t have it any other way, but what is wearing me out and upsetting me and causing me sleepless nights are all these people pushing in, checking up on us, causing problem after problem when all we want is just to be left alone to live our family life with some peace and tranquillity not the stress of having to deal with all these people, their issues and their endless demands on our time and resources.
Why is everything about this whole issue, so, so hard?