Update on my mother

1.6.09

First of June and Mummy was supposed to be sent home from hospital today. I asked my sister to text when she arrived, but it is afternoon and she hasn't done so. Maybe she is too busy - if Mummy is back - or maybe she hasn't come back yet.

The hospital don't let you know anything. Even when you ask - it seems. But let's go back in time a bit. I stayed Friday night and Saturday day with my sister and visited Mummy twice, giving sister the time off. It is quite time consuming visiting someone in hospital every day. Also expensive - this is Chichester hospital and they charge £2.60 for between one and up to two hours. I think that's pretty damn expensive.

On Friday when I went Mummy was awake all the time, but practically nothing she said was relevant to now or even reality. We talked all through my visit and I tried to reassure her about things she seemed upset about but don't know how much she really is aware of what is going on. She asked several times where she was. The first thing she said when I went up to the bed and told her that I was there was 'I'm in such a muddle with this' - she was plucking at the bedclothes. I understood what she was talking about straight away (knitting) and said 'Don't worry, xxxxxx will sort it out'. 'Oh yes' she said 'xxxxxx is an excellent knitter, but I wanted to help her'.

She then asked me if it was teatime and I said that they would probably bring round the trolley soon. She wanted to know why we couldnt make it, and I said it was because we were in hospital but when she went home we could make tea whenever we wanted it. Oh, she said 'Would you like a sausage roll?'.... 'I'm ok for now' I said 'I've got this' and I indicated the nutty bar I had brought in with me to eat. Ignoring this, she then asked me if I would like a salted prawn. 'Not at the moment' I said.'Well' she warned me 'They'll probably be all gone by tomorrow'.

The bed had the rails up, of course, and Mummy now speaks very quietly. The only way I could hear her was by kneeling on the bedside chair, and leaning over onto my elbows on the bed, bottom up - luckily her bed is at the end of the ward.

I asked her if Daddy had been there. She said that he had and that she had seen him 'in form' she said, and not just heard his breathing. Good, I said, if you see him again tell him I love him; we all love him. You love him too don't you? Well that started her off. She wasn't at all pleased with him, she said, he had let her down. She told me that he had married another woman. I am prepared to go along with all her hallucinations and fantasies, but not that. 'No Mummy' I said 'He was married to you and he died while he was still married to you'. She looked at me pityingly, like she was thinking 'you poor deluded creature' and said 'I know, but he has still married someone else'. 'He couldnt do' I said 'He's dead'. She looked straight at me, which is difficult as she is so crumpled. 'We thought he was dead' she said 'But he wasn't really'. 'Yes he was' I insisted gently 'You didn't want to see him, but I did and I promise you he was dead'. She thought we hadn't had a doctor in, but then remembered that we had. But she still wouldn't be convinced that he hadn't married someone else. I felt like saying something she always used to say to us when she thought one thing and we thought another, and she wasn't going to argue about it 'Well, you have it your way and I'll have it mine'.

The baby I talked about in the last blog is still there. It wasn't there at one of my sister's visits and she said Mummy was very upset at this and the fact that she didn't have a jug to make up formula (we were all breast-fed but this baby is not Mummy's apparently). My sister just told her that while she was sleeping the staff had taken it away to feed it. But the baby was there this time, and she asked me if I didn't think he was very sweet. I agreed he was. 'Whose baby is it? I asked. 'Daddy's' she said 'With another woman'. I was rather taken aback. Mummy looked down at the nothing in the crook of her arm and said 'But you can't help loving the little thing, can you?' 'What's his name?' I asked. Well she said we were going to call him Colin and then we decided on Duncan. Duncan XXXXXXXX (our family surname) sounds good doesnt it?'. I have no idea why she would fix on Duncan. It doesnt seem like a name that would've been used in our family. I know she was going to call me Peter if I had been a boy.

Although this conversation was totally surreal, afterwards it played on my mind a bit. My 2 eldest sisters (18 and 16 years old than me) have often hinted at Daddy being unfaithful and each time I've brushed it aside saying I didn't want to know. And I don't. It really doesnt matter that much now, although I appreciate that if it was true then it would've caused my mother a great deal of pain at the time. But if there had really been another child, a half-brother to me, how would I feel then? I couldn't resist using my www.ancestry.co.uk account to look up the name in the searches. There was no Duncan XXXXXXXX... but our (fairly unusual) surname is frequently spelt wrong, so I put in a search for the name using the wrong spelling. And there it was...... This particular Duncan was born in 1961 in Hounslow. Not very far from where we were living, and when I was 4, my next sister 7 and the eldest two 20 and 22. The 22 year old unmarried and still at home and my 20 year old sister was having problems with her marriage and had two children of her own aged 2 and newborn. With this kind of full-on fraught family life, maybe my father had steered off the marital path a bit. And he was a charming and good-looking man. Or I could be putting 2 and 2 together and making 105!!! Or maybe I'm not....'Don't be too disappointed with Daddy' was another thing she said 'But I thought it best that you know'.

So, I steered Mummy away from that topic of conversation, and instead asked her if she had seen her mother. 'No' she said 'Has she been to see me?'..... 'No' I said 'She passed away many years ago, but I wondered if she had visited you in spirit'. But she hadn't and I wished she had, and here's why, but of course I didn't bring this up again with Mummy at this time. My granny, my mother's mother, died of cardiac failure when she was only 67. She died in hospital, and when my parents arrived at the hospital she had already died and been put in the mortuary. Daddy persuaded Mummy not to go and see her. He could put a lot of pressure on, and was disagreeable when he didn't get his own way, and apparently said it was too far to the mortuary from where they were, and it would upset her to see her mother dead. She gave in, but many times over the years, she told me how much she regretted it. Only last summer when she was in the nursing home, she went over it all again with me and I tried to reassure her that her mother would've understood. 'I've regretted it ever since' she said with a tear trickling down her cheek. So for 48 years she has had those painful regrets, all because she wouldn't stand up to my father and he couldn't be bothered to trek through the hospital to wherever the mortuary was to pay his last respects to his wife's mother. I'm not saying people should see dead people if they don't want to, but they certainly shouldn't stop those who do want to from doing so. For years, Mummy has said that her mother always put a red rose in the hands of the dead relative and I promised years ago that I would do the same for her, and give her a second rose which will be from her to her mother.

My visit ended after more conversations about parties at the weekend that she thought she had attended. I waited til she had had a few strawfuls of tea from her beaker, and settled down to sleep. Different staff - often young men- come round with the tea trolley, but I am not sure what happens if a relative is not there to assist the invalid with their tea whether they would actually get any. Mummy certainly might be able to say, yes, she would have tea, but she can't pick up the beaker from the table if it was just left there.

The second time - Saturday - she looked dreadful when I went in, lying with her mouth slack and her face so pale I thought she might have actually gone. I spoke to her and saw her chest was going up and down, but she stayed asleep or not talking 99.9% of my visit.

I occupied myself with taking a good look at her notes and copied down some stuff. I believe she is hardly eating and drinking now. She has not had her bowels open for 9 days - though this is hardly surprising. They stopped her Fentanyl pain relief patches and she was a day without pain relief (I think) but now they have put her on another patch called Buprenorphine (I'm pretty sure its not called Bupremorphine). Another, very compos mentis lady in a bed in the ward told me that she had been crying with pain in the night, and at the times when they moved her position and I was horrified, and glad to see on the notes that they started the other patch. Why would they take her pain relief away? That's cruel.

The hospital had wanted to send Mummy back on Friday - having giving my sister a day's notice! Sister said she couldn't have her back til Monday and that was agreed. Despite the hospital saying that they would 'put a care package in place' they had no intention of doing so once they found out that Mummy has money. All they have done is give my sister a list of care agencies to ring. No wonder she felt so overwhelmed before I went down.

They have provided a hospital bed and it has now been delivered and is very good, with rails both sides and a special mattress that pumps up at the touch of a button. All clean and new.

Sister and I discussed things at length and although she rang a couple of the care agencies she didnt feel happy with them or that she could organise them before Mummy came home. I don't know if it was one agency or both, but certainly one said that they would have to come round to discuss the whole situation with her AND with Mummy, and when sister said Mummy was certainly not up to that sort of thing, they said they still would like to talk to her!

They also said that it would not be possible to send only one carer - they would have to send two each time as one wouldnt be able to manage. Sister said that she would be there but they said no, health and safety blah blah. The cost would be £15 per hour per carer, week days and more at weekends. If the carers came twice a day, we roughly calculated that it would cost in the region of £380 per week.

Now the money isnt really the issue, but my sister's feelings are. As I said we discussed it all at length, and we came to the conclusion that rather than rush into an arrangement with agency carers that she may well find unsatisfactory, she would see how it was looking after Mummy on her own.

We both felt that she would get annoyed with having two carers coming in say twice a day and not doing very much at all. It would not be part of their job to feed Mummy or give her drinks, so all they would be doing, we thought, would be maybe washing her and changing her, and maybe changing the bed.

Sister and I don't think she will need much washing. Her face and hands gently wiped once or twice a day of course, and her 'nappy' changed several times. As her intake is now so little, I don't think her output will be much. The hospital havent got her in proper nappies, just a sort of bed protection pad between her legs and another under her.

She will need to have her position changed, but sister practised with me on the hospital bed (it's very comfortable) and acting helpless and she could roll me from side to side, and Mummy favours one side anyway. Sister knows how they change the undersheet by rolling the person slightly one way and then the other.

The hospital apparently don't provide anything, and neither do the care agencies - you have to buy it all. It doesnt seem like they do much or provide much!!!! Sister and I went out and bought nappy pad type things like the hospital have, beakers like the hospital have and Mummy is using there, some soft plastic spoons, some baby food puree in jars, and various wipes, antiseptic sprays, gloves etc. and a swing bin for Mummy's room. We arranged it all , and my sister felt more confident about having her back.

The woman in the Disability Shop said that if you get in touch with your surgery, the district nurse should provide you with all you need for an incontinent person. The Govt pays (nice of them, after all the expenses they have claimed!) So sister will get in touch with the surgery again - they werent very helpful when she rang before but now she knows a bit more. She will also get the doctor to come and do a home visit asap, so Mummy has been seen by her own doctor and obviously she (the GP) knew what Mummy was like before. It is obviously essential that Mummy has proper pain relief.

I will go back down on Wednesday or before if my sister needs me. I really don't think poor Mummy will be lasting much longer, and wouldn't want her to the way she was on Sunday, although she may pick up a little back in the quiet of her own bedroom..

I was sad at her bedside on the Sunday, but she was able to say 'love you' to me and smiled when I kissed her goodbye.

The end.