Week Thirty-Eight

Mammy and Debbie at Herbert Street…

I went to a friend’s funeral today and have Alf’s to attend next week – I offered to take Monica to Wilford Hill to say goodbye to Alf, her long-standing friend of over 52 years. I’m glad I managed to take them to Newark Market earlier this year. He loved that place.

The Social Worker is back and encouraging me to go ahead and look over a few of these homes. He reiterated how he had found the whole process very difficult.

***

So this week I went along to ‘Sunset Copse’ – it’s in Caythorpe, a sleepy little village next to Lowdham. I must say that I was very impressed right from our first meeting with a member of staff in the car park. The place was welcoming, homely and very enthusiastically and professionally run. I am slightly concerned that Mum would bang in to too many things there, but that is my only concern. I would love her to be in such a homely environment with what looks like a very stable, generous and committed staff. I put Mum’s name down on their waiting list, feeling much more positive again about Mum’s future.

A couple of days later I got a call from the Social Worker to say ‘not putting pressure on you, but…’ apparently he has been given grief about standing up for me in that MDM. I was glad to be able to report my positive experience at ‘Sunset Copse’ and reassured him that I ‘ll go to see the one in Cotgrave next week.

I was disappointed to have a letter from the Gold Acre, saying:

A meeting was set up some weeks ago regarding your mother’s future care. I would like to arrange another meeting for the 6th November 2009 at 10am, with regards to your progress in finding a suitable placement for your mother, as several weeks have now passed…”

It has only been 2 weeks and I do feel they are putting me under too much pressure to find ‘a suitable placement’ for Mum.

Mum is clearly now in the very late stages of whatever dementia she has. She was in one of the lounges at Gold Acre with a few other residents sitting around listening to some soothing pan-pipe music… In came a man announcing a ‘light and sound show’ and it occurred to me that I may never have visited Mum there at that time of a morning, as I’ve never witnessed any entertainment or stimulation. Mum loved the music – a Vera Lyn experience – which you might not expect an ardent rock and roller to enjoy. The nurse was trying to encourage the residents to play percussion instruments and one resident danced with a flag. The result was kind of chaotic, but stimulating and encouraging.

***

Yesterday I had all day out and about. I took Monica to Alf’s funeral at Wilford Hill. The traffic was busy and there were three minutes to go when we stopped to discover that I was heading for the wrong crematorium. Managing to retain a whole string of instructions from a passer by about little bridges, pubs, lefts and rights and roundabouts, we pulled up outside the correct chapel just four minutes late. Monica was pleased to have said goodbye to Alf and I was glad to have been able to help. Then I took Monica home and headed to my next appointment.

It was an ‘Involvement Strategy Group’ for the Nottinghamshire Healthcare NHS Trust. Most of the people around the table (about twenty) were ‘Leads’ representing directorates within Notts Healthcare Trust. A few of us (seven) were ‘carers’ or ‘service users’/’volunteers’. I learned that the Nottinghamshire Healthcare Trust (dealing largely with mental health issues) is distinct from the Nottinghamshire University Hospitals Trust, although both are under the umbrella of the NHS Trust. The discussions and issues raised were very encouraging. I have much to learn about this huge institution and I felt both ‘out of place’ and yet somewhat honoured to have been invited in the first place – like I had gate-crashed a private party. I would like to be involved in influencing and shaping policy decisions – to contribute by offering the perspective of the carer and on behalf of the service user.

***

I should not have gone to see Mum today. I am feeling too emotional myself. This morning I found her slumped over in her chair, looking quite pitiful. I greeted her cheerfully and tried to engage, but she was distressed. She had her eyes shut or half dazed but kept shouting, “No, stop it!” and then she would cry soulfully. I was unable to help her today. They brought her dinner, but she refused to eat more than a couple of mouthfuls. Between sleeping, shouting and crying she was blowing big bubbles through her nose and had a swollen tomato face by the time I left. I think I looked much the same. I am sure we were a sorry sight when the nurse came in with Mum’s medication, saying that the Trazodone should help her. After another hour I went home, having failed again with Mum.

I still haven’t been to see the home in Cotgrave either. If I don’t go tomorrow I will feel under a lot more pressure because we are busy for half-term next week. I also feel stressed because I have done nothing for Conor’s birthday either.

***

Today I got another call from the Social Worker to say that Mum has been awarded Continuing NHS Funding. I need to make sure that they haven’t stipulated a different sort of home for her now.

***

Now I have a letter to say that Mum’s case for NHS Funding has been deferred due to insufficient evidence. This letter was written three days ago and they may have had another meeting since that.

I can’t deal with that until next week now as I’ve got Conor’s party to sort out.

I never quite know how I’ll find Mum, but I think it depends on who I’m looking for. Many days I am so relaxed and happy to be with her that the whole experience is positive and rewarding for us both. Other days I try hard to get no-where and feel frustrated. I think most of it is my problem of attitude rather than hers.

I saw the place in Cotgrave this week. The Deputy explained how they were full (with a waiting list of five since June) and so ‘there was little chance of a place’ for Mum this side of Christmas. I explained that I had been instructed to look around the places recommended, so she passed me over to her ‘Activities Coordinator’ who did an excellent job of showing me around. I was impressed with the space, the set-up and the ratio of active helpers. There were definite quiet places, and it was incredibly calm at this moment in time and space. I put Mum’s name on their list anyway.

***

They were very good at Mum’s routine check-up at the Maxillofacial Unit – not to make us wait too long, then a quick look and ‘fine, see you in six months’. Mum seemed very small and soft and I felt very protective of her.

***

I expected to find the team from last time at today’s review, but found myself in another room with three completely different people. The Ward Manager, who sent me the ‘hurry up’ letter a couple of weeks ago, a senior nurse and a man I recognised from the St Peter’s Wing. The Manager made it clear that the purpose of the meeting was to find out what progress I had made finding somewhere for Mum. I explained where I had been, why, and what conclusions I had drawn. Then I explained my frustration at not knowing quite what to do next. I tried to follow their responses but was hearing such mixed messages. They seem to be saying that the funding will depend on the type of home recommended by the PCT, but nobody knows what that is yet. They emphasised again how theirs is a ‘challenging behaviour unit’ and Mum ‘does not have challenging behaviour’; worse still, ‘as a vulnerable old lady’, they argued that she is possibly at risk by some of their more challenging residents. They said that they can’t just keep Mum until a place becomes available in somewhere of my choice, but that I had to find her somewhere – anywhere – and could move her again later if I so desired. To recap and try to clear my confusion I said it sounds like they want me to find somewhere before I have been told which category of home I am looking for. I began to blubber, which is really annoying when I have a point to make, and asked if they could find out from the PCT what type of home I should be looking for. Then, whilst handing out tissues, they assigned that job to the man who knew Mum in St Peter’s Unit.

I got cross about it all later. One of those days when you feel like everything is left to you. Feeling sorry for myself I managed to recall some wise guy saying “If you want to change the world, you have to start by changing yourself”. (Ghandi?)

The chap at Gold Acre today said that he had spoken to someone in the PCT, but that there was no information yet about funding, although they had apparently already decided at the MDM in September that Mum would need to reside in a home with Registered Mental-Health Nurses. I replied that they had recommended Kirk Way at that first meeting as having a Mental Health Registration. I wrote it in my notes. He argued that it didn’t. I could feel myself becoming frustrated again in a circular conversation and asked him to tell me precisely which homes I should look at. He mentioned two, then heartily recommended another home in Cotgrave, which has a newly developed ‘Mental Health and Challenging Behaviour Unit’ as well as a Registered Dementia unit. He thinks I will like this one, and, more importantly, they have rooms available. I told him I would go next week. I am still getting mixed messages from them – To get her out of Gold Acre they say she doesn’t need a challenging behaviour unit, yet the PCT are saying that IS the type of home I am looking for. Does she need a challenging behaviour unit or not?