Thursday, April 26, 2007

MUM - 2

The story I began to tell of what happened to my Mum and, consequently, to me, during her last illness produced a tremendous response. What astonished me was the number of people who had had similar experiences, particularly regarding the NHS. For this reason and because, strangely, if all this had not happened I don’t think I’d have retired from secondary teaching early or even that I would have ended up in Sicily, I have decided to post, in instalments, about what happened subsequently. I should point out, again, that I wrote this before leaving the UK though obviously I have edited it and changed names.

In this post I must tell you that several battles were going on besides the one Mum was having with the grim reaper:

Throughout the three months of Mum’s hospitalisation, I had several run-ins with the benefits agency and other bodies. Just getting Mum’s pension paid directly to me was a drawn-out bureaucratic process. [ There was still rent to pay on her flat and she had other needs.] She was too ill to sign for it, and not sufficiently “of sound mind” to be able to give me power of attorney. I’ve learnt, now, that people should sort these matters out while they’re well, by means of a “living will”. It saves the relatives a lot of added stress at what is already a heartbreaking time. I was also astounded to find that, once a senior citizen has been in hospital for 6 weeks, their state pension, for which they have paid all their lives, is reduced. The logic is that they are not having to pay for food and so on. I was appalled; the person still has needs! This amounts to charging the elderly for being in hospital and again, someone should fight a campaign about it. I did raise this, along with other issues, with my MP afterwards and he asked some questions in the House. But I didn’t have the energy left to kick up more of a stink. Then there was trouble getting Mum's housing benefit through as well; or they’d send it to Mum’s address instead of here [although I had gone through all the correct procedures; Mum didn’t have a bank account and was obviously unable to cash the cheques; therefore they had to be made out to me] .Every time I had to go and sort one of these muddles out, it was time away from that bedside and I eventually threatened to sue the benefits agency if Mum died while I was waiting there. [That got me some action, all right!] I took this up with my MP too and he got me a written apology out of them.

I used to think that if the benefits system was getting me down , and I am not exactly stupid [despite occasional appearances to the contrary !] and I was not afraid of them, then it must wear down some elderly people: I can understand how they just give up and do not claim their entitlement. It makes me angry still. [In fact, I considered doing a course in citizen advocacy at one point after I left secondary teaching.]

Meanwhile Mum’s bills were piling up and I was trying to cope. I carried stinking nighties home to wash most days: in the end it was quicker and less hassle to buy new ones every couple of days. I was spending money on taxis, too. And my phone bill was astronomical because of all the calls to various agencies. Although it was obvious to me that whatever this illness was, it was terminal, I didn’t think I had the right to clear Mum’s flat while she was still alive. I had to be very careful what I said to the warden and others in the building [it was a flat in a “sheltered” complex for the elderly: this means that the person has their independence but there is a warden there to check that they are all right, morning and evening, and who can be called in an emergency]. They’d have liked the flat cleared and someone else housed in it [understandable, I suppose - they must have a waiting list].

There was also a battle to be fought, on one level, with the hospital. At the time the Community Care Act had just been passed: This means that a hospital can no longer discharge someone who is confused and just hope for the best; there has to be a care plan. The Act is also designed to stop unscrupulous relatives from benefitting from the situation. But at the Heath Hospital, nobody knew what they were supposed to do with someone like Mum. There was no diagnosis until post-mortem and they really did not know whether she was acutely physically ill or whether it was all mental. They used to change their minds about this from day to day. [This would upset me terribly; on the days when they would say they thought it might all be psychological, I started blaming myself, thinking that perhaps if I’d given her the pleasure and stimulus of grandchildren she wouldn’t have gone crazy...] Anyway, if they were going to discharge her, they had no idea where to send her. Several possibilities were discussed and I began to feel I had to keep a step ahead of them: At one point - only a week before she died - they talked about transferring her to a “psychogeriatric” hospital [the very term makes me angry] so I went and checked the place out. The standard of care is, I’m sure, very good but I found it an horrific place. All these “lost”, skeletal old souls were wandering around and the ward stank of urine. Mum, as a bed case, would have been an object of curiosity to them and over my dead body was she going there. That day, when I got back to the Heath, the housewoman said she was going to make arrangements for the transfer. I said, “You do that and in the meantime I’ll call my MP.” [His office were getting used to calls from me!] They got a consultant down to see me fast, then, and, as with most situations, once you get to the person at the top you get sense. He promised me they would do nothing without my permission. There were several incidents like that. [How could I have abandoned Mum and got on with my career, when they might have transferred her at any moment because they needed the bed? - I couldn’t do it.] In the end I wrote to the Director of Social Services; he wrote back and agreed that the implementation of the provisions of the Community Care Act was, indeed, a mess , and that because of what I had told him a proper procedure was being established in what was then South Glamorgan. When Mum’s consultant found out what I had done he actually thanked me; it was a relief to his team to be told what they were supposed to do in such cases. I still think that there is something dreadfully wrong with a society in which, if an elderly person has cancer, there are hospices; but if they are confused and too physically ill for a nursing home, the only possibility [I nearly wrote “option” but it is not an option, there being no alternative] is a psychogeriatric ward such as the one I have described. What happened to dignity?

Now I must tell you what was happening with work and this means I must tell you a little about the school where I was a head of department at the time: It was in a very deprived area and the kids were “difficult”, to say the least. It’s important to say that I wasn’t unhappy there prior to Mum’s illness and that I did have my share of successes and laughter there. But it wasn’t like anywhere else I had taught [and I’d taught in some tough schools, including a boys’ secondary school in London where, even all those years ago, there was a police van in the playground every night]. In this school, at that time, heads of department and heads of year walked around with bleepers in their “frees”: If the bleeper went, you ran to the nearest phone and then to wherever the trouble was. Fights broke out all the time and 15-16 –year-olds, if they didn’t like your instructions, would suddenly decide to lie on the floor and scream, “I ain’t fuckin’ doing it!” I got along with the Head quite well and he was a man who liked to delegate; once he delegated that was it; he never intervened in the matter. He delegated staffing issues to his deputy, whom I shall call Mrs Joan Davies. I got on quite well with her, too, but, she was not a person I felt I could talk to about a personal matter.

Anyway, on 9th June 1993 I called school and explained what had happened. Mrs D wasn’t there but the Head was sympathetic and suggested I take the rest of that week off. [You were allowed 2 days’ “compassionate” leave in any case.] I was in shock, crying all the time and in no fit state to deal with children. It was all I could do not to cry whilst I was actually with Mum and I’d decided that this was important; I didn’t want her to know how ill she was. I had no idea ,then, what the timescale was going to be; I honestly thought they’d diagnose within a few days and arrange the necessary care. I really thought I’d be back at work by the Monday. But things deteriorated and it was like a helter-skelter, as you’ll see when I get back to the chronology. Basically Mum was dying but no one could tell me how long we had or how it was likely to happen; they couldn’t even tell me how the illness would progress from day to day. My school was a long way from the Heath and I didn’t have a car or a mobile phone. [Reading this to edit it in 2007, that seems so strange - a mobile phone would have made such a difference!] How would I have felt if Mum had died when I was on the bus or something? It was bad enough when I was on the bus coming home from the Heath [for you have to go home sometimes]; there used to be an interminable wait at the bus station before the bus continued on to my area, during which I used to be terrified that something had happened with Mum and that the hospital had been unable to reach me. Moreover, at school the phones were not manned during breaks and lunchtimes. At one point Mum screamed for 2 whole days. I just did not feel I could go in and deal with volatile, screaming pupils; I was scared I’d break down or just end up being a screaming wreck myself. I didn’t know what to do so in the end I called my teaching union . The union officer, whom I knew pretty well, thought that the risks of a message going astray at school or of my bursting into tears in front of a class were too great and he advised that I take sick leave. This was not an easy decision: I was still very much a career woman and the work of an HOD at the end of the summer term is considerable . Having said that, at least the exams were over and marked. So I went to see my own doctor and he immediately said that there was no way I could cope with my kind of job and the situation with Mum. He was protective and would have gladly signed me off with some vague physical cause [and I should have let him] but I wanted to be honest and so he put “stress”. I should also point out that I didn’t have a brother, sister or even another relative who could have been with Mum when I couldn’t. And she desperately needed someone with her most of the time, not least because someone had to fight for her. That person could only be me.

Well, Joan started calling at all hours and being quite aggressive. When someone close to you is seriously ill in hospital your heart stops every time the phone rings. What I was dealing with at the hospital was bad enough, but Joan Davies would have me in floods of tears every time she rang. Other staff, friends of mine,would come to the hospital and then try to explain to her what was going on but she kept calling. And I made the fatal mistake of being honest with her[ instead of saying I was ill myself]. Once I asked her to come over to the Heath and see and then she would have understood but she wouldn’t go near illness. Yes, the woman had a management problem with an HOD being off, but if I’d been run over or taken ill they’d have had to cope, just as they’d have had to cope if I’d had maternity leave! There are just times when all “normal life” has to be put on hold and this was one of them. The calls became more and more frequent and the tone of them was deeply upsetting, even threatening. The union officer wanted to call Joan and tell her, in no uncertain terms, to stop. Perhaps the best method of defence would have been attack with her - I don’t know. But I was thinking that it was nearly end of term and I’d have to go back and work with her so I left it.

When it was all over and I was back in the swing at school, a year 11 pupil called Lucy [whom I first encountered as she was trying to burn the handle off Joan’s office door with a cigarette lighter!] used to hyperventilate and create havoc in my lesson every Tuesday morning. This was all to do with the fact that she had a lesson with Joan next and “I 'ates Mrs Davies”, she would yell. [“So do I”, I wanted to say.] I used to sit her in the storeroom and try to calm her down. One day she went hysterical and told me there was some wood loose on a desk in Mrs Davies’s classroom and she spent every lesson loosening it some more so she could eventually go for Joan’s skull with this plank of wood. “And now I’ve told you and you’re gonna spoil it and tell!” screamed Lucy. “I’ll personally hand you the bloody plank”, thought I. I did spoil it, of course..

2007: What I think all this points to, apart from shortcomings in care for the elderly, is that in the UK there is no provision for extended compassionate leave when you are faced with a situation like this. Yet, as people live longer, more and more of us are going to find ourselves needing it. Usually, when someone develops dementia, it is a long process. When the time does come when the person can no longer be cared for at home, sad though it is, the care home gradually takes over and you, as the relative, slowly learn to accept that. In Mum’s case it was not a long process. She went from being my Mum, with whom I discussed politics and the state of the world every day, to being this person who didn’t know me half the time and whom I didn’t recognise, within a matter of a couple of weeks. There was no time to “come to terms” with it; all I knew was that she needed me and I had to keep a step ahead of those who would have put her “on display” in a ward for patients with a mental illness which she didn’t even have.

The personal irony of what happened is still not lost on me: before all this, I was the archetypal single, career woman. I’d never had any patience with women colleagues who took time off when their children were ill [I don’t mean in the case of serious illness; I mean in the case of their child having a cold or a stomach upset]. I never understood. “You’ve got a job so do it”, I would think. Then I found myself in this position and I could not do mine.

To be continued


Ruthie said...

You're absolutely right, there are times when regular life has to be put on hold for an indefinite period of time. Serious illness and death require it.

Joan sounds like a difficult (to say the least) person. How could she have so little compassion? Didn't she ever have a mother?

I know you're appalled by the state of the elder care system in the U.K. (the U.S. situation is very similar). You said you've thought of teaching a citizen advocacy class... that sounds like a great idea.

I have another idea, just for the sake of consideration. You could write a book... you have a really compelling story to tell.

It's just a thought.

Welshcakes Limoncello said...

Thank you, Ruthie. Joan was difficult, yes. As far as I know, she did have a mother who was very sprightly well into her 80s. I don't know what happened after that. I think you can feel for others or you can't, basically. Just to clear up the advocacy thing: what I meant was I considered learning about becoming a "citizen advocate" so that I could help other elderly people. But I had to earn a living and so I never did it. But it is something I would do if I were still in the UK and didn't have to earn money. I'd love to write a book and it's my ambition - any book, about any subject I know about! - but I wouldn't know where to start trying to publish, Ruthie. Many thanks again for your kind thoughts.

Anonymous said...

I agree with Ruthie. You have a story inside you that might give readers the feeling that they were not alone.

Lee said...

Compassion...yes...we do have it. And it comes at times like you describe, Welsh. They are difficult times...I've been through them...with my mother, grandmother and brother. And it is difficult, but they are times that you, alone, go through. No matter what else others say or do..whatever other forces are in find a strength within you that you never knew you had.
It is life...and life is not always rosy...more times it is dark, sad and full of sorrow...but somehow, one pulls through...and is a better person at the end...I guess that is the legacy our loved ones leave who are left alone to face the future...alone.

jmb said...

Hi Welshcakes,
I left a really long comment on this post. Did it not come through? I notice the one I left after it on the post above is up. If you didn't approve it for some reason that's all right too.

Welshcakes Limoncello said...

Thank you, Steve. I think a lot of people have been through something similar and it would certainly have helped me if I'd known that at the time. So I am thinking about what you and Ruthie have said. Dear lee, I knew you had been through it with your brother and am so sorry about your mother and grandfather too. I think you are right - we do find a strength at these times but we are alone. And it does leave us changed, hopefully for the better. Jmb, I didn't receive your other comment on this post. I have double-checked and it's not anywhere. I don't understand it. I am sorry and thank you anyway for taking the time to write it.

jmb said...

Well WCLC, I'll try again.

Your bureaucratic nightmare with the benefit system was ridiculous and indeed I do think that elderly people are intimidated by it and do give up fighting because they don't have the energy or knowledge. I think they also constantly live in fear of losing some benefit or other for some reason that they do not understand. Your mother was very lucky to have you to fight for her rights.

It is important to have a power of attorney but a living will often has no power in law, depending where you are. It is usually the next of kin (in my case I have a legal document allowing me to make all medical decisions for my Alzheimer friend) who has to make the decisions so it is important that the next of kin knows what the patient's wishes are. So written documentation helps here.

On the one hand you were lucky that a discharge plan was needed, however with a lack of diagnosis it made it difficult for everyone.

I am very familiar with these situations since the hospital where I worked for 18 years had 240 acute beds, 300 extended care beds and 60 psychiatric beds. They were constantly trying to free up acute beds occupied by elderly patients who could not return home. At any one time we had 10% of beds occupied by people awaiting placement. However there was often no place for them to go. In the Psych unit we had some psychogeriatric patients with the regular psychiatric patients which was less than ideal. Luckily we had registered nurses and not psychiatric nurses because these patients were really physically ill as well as cognitively impaired. Psychogeriatric patients usually are cognitively impaired, clinically depressed or stroke victims. Would they be better in the extended care unit? In actual fact that's where my AD friend is. On the cognitively impaired floor of the extended care facility. The reality is that no place is perfect. Sometimes you have to think is the care here good and make that the main thing. The truth is that elderly people are often incontinent, have no control over their bowels and sometimes these places smell because it can't be helped. No there is no dignity there. But often the patient is no longer aware of that fortunately. I think we are often projecting our own fear of being in such a place onto the situation.

In my experience with the caregivers, both then and now with my friend, I have found them to be very caring kind people. I always call them the angels in the hospital. It is a very difficult job.

That said every time I go to visit my friend I wonder if I did the right thing. But where else could I put him? Despite the fact that he has millions and we could pay anything, no private care facility would take him. He is incontinent, has no bowel control, can't walk, can't feed himself. He hates being handled during personal care and hits out and swears at his caregivers. It's a horrible situation with no solution.

If I had been you, I would have let the union person deal with Joan. This was downright harassment and she should have been called on it. I was a "union person", at my workplace and dealt with situations like this all the time. ( Well not as bad, but earlier intervention might have prevented it escalating.)

Of course you were right to take stress leave, you could just manage to look out for your mother let alone do your job.

As for compassionate leave, I think there is more will to make this happen now. I have heard it bandied about recently and in fact it could save the "system" money, enabling someone to care for a relative at home rather than in the hospital at much greater expense.

I know that it was a great shock to have this suddenly happen to your mother and the three months must have been agony for you. To see the woman who was your best friend as well as your mother disappear before your eyes was tragic.
Sadly this posting is probably bringing back all the bad memories but I hope in doing it you will finally be able to put it behind you. As I think Lee said, you proved yourself to be a strong person and got through it.

Once again a long comment but now that it's late, at least no one will read it but you. If it's too personal just read it and don't let it show. I'll understand. I copied it to a file so that if it doesn't come through I'll email it.

Welshcakes Limoncello said...

Dearest jmb,
Thank you so much for recreating your long and considered comment. I do appreciate it. Yes, the next of kin needs to know what the patient's wishes are / would be and I did know with Mum but unfortunately didn't have it in writing. It is true that the lack of diagnosis was the thing that made it most difficult for everyone concerned. The medical staff certainly did their best here, running every test they had, but there was just no result. I agree with you that this is the trouble - that there is often nowhere for such a patient to go - and I'm glad to hear that you had registered nurses at your unit. I also agree that no place is perfect. It's hard to realise that your relative is probably not unhappy in that dark place of the mind where they are and yes, it is partly our fear of our own old age that we project onto them, but also, I think, our memory of the person as they were and how they would hate it all. Looking after them must, as you say, be a very difficult job and it is certainly thankless. I couldn't do it and admire those who do. With regard to your own situation, you have done, and continue to do, everything possible for your friend. I am convinced you are doing the right thing for he is clearly beyond home care now, sadly. I feel for you in this situation, as you know. In a way posting about all this has brought it back but I felt it was important and, as you will see, it kind of brought me here. Love from Sicily.

Welshcakes Limoncello said...

Jmb, sorry, I forgot to say that I agree I should have just let my union deal with Joan. I probably wasn't thinking straight at the time. And I am glad to read, in your comment, that some countries might be looking at the compassionate leave situation now. I did hear a radio documentary, some time ago, which indicated that one of the Scandinavian countries has got this sorted but I don't remember which one. Governments really need to look at this issue. I do so appreciate your insight, knowledge and compassion on this issue , jmb - and your comments on all posts, so please, keep them coming! Simi sends love, too.

Ballpoint Wren said...

WC: I find your story as fascinating as it is heart breaking. Here in the U.S., Europe and the U.K. are often held up as examples of an perfect health care system. I often wondered how much easier it might have been for my elderly, failing friend if we lived in the U.K.

But it sounds like the U.K. has similar troubles, especially regarding the care of the elderly.

And in my experience a power of attorney is easily ignored unless you are physically present and screaming bloody murder. My elderly friend's niece put a copy of her power of attorney in the hospital file, gave one to all the doctors and even plastered another copy on the wall of the hospital room, along with as written instructions regarding her care, and the doctors STILL did what they wanted to do.

At one point you get so worn down you can't fight any more.

Welshcakes Limoncello said...

Hi, Bonnie. I think it all depends where you are in the UK, sadly, these days. I empathise with you and your friend. It is so true that you can reach a stage where you just can't fight the system any more and it is so sad, because nobody should have to.

Shani said...

Last week I had three forms returned to me, all had been filled in and sent off by the Liaison Officer of the the Unit that Toby is in. Each form had been filled in incorrectly. Each had over 52 pages of exactly the same questions.

I despair - does the NHS have altzheimers, or hasn't anybody told them about computers.

My friend I hurt for you and hug you...


Welshcakes Limoncello said...

Hi, Shani. I feel for you, too. What is the matter with these bureaucrats? Don't they realise that relatives have enough on their plate worrying about their loved ones? The extra distress all this causes is so unnecessary. Love from Simi and me.


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