Difficult Post

I haven't posted on here for well over a week, which, if you are a regular reader of my ramblings in this blog, will not have surprised you. The reason is that my lovely wife, Carol, passed away on 11th December. The last 18 months or so have been a really traumatic journey, from the original diagnosis, through 12 completed cycles of chemotherapy, the infection she got after the final chemo cycle, the hospitals stays (I've lost count of how many she had.), but throughout I have gone with her for each consultants appointment, chemo cycle in the oncology department at Milton Keynes University Hospital, consultant's appointments at the Churchill Hospital in Oxford, Endoscopy, M.R.I. and as  well as C.T. scans, then to Willen Hospice and finally, Castlemead Court in Newport Pagnell.

I have been supported throughout all this by members of Shenley Christian Fellowship, particularly our Pastor, Ross Dilnot, who was with me on the morning of Carol's death. He came with me when I went to the Registry Office to register the death, which we did last Friday morning and then to Mason's, the undertaker's in Newport Pagnell to arrange the funeral, which will be at 2 p.m. on 11th January at Crownhill Crematorium.

I was supposed to have had a second stent fitted the following day, 12th December, at the John Radcliffe Hospital in Oxford. I was driven there by Tim O'Brien who is a member of S.C.F. There was no way I could drive, and I was supposed to get to the hospital department by 7.30a.m. Also, I was told that I would not be able to drive after the procedure. I was on the morning list, so I'd be finished and ready to come home around midday.

But, unfortunately, I had a bit of a meltdown. I should have cancelled the procedure, but it was barely 24 hours since Carol had passed away. So I discussed this with one of the nurses and explained that I was feeling depressed over Carol's passing. She understood and suggested they postpone the procedure. Then one of the doctors came to talk to me and said that there was no immediate emergency regarding the procedure and it could be postponed until sometime in January. Hopefully after the funeral. The doctor had to ring Tim on his mobile because he had gone off to park in a park-and-ride carpark with the intention of going into the centre of Oxford until I was finished after the procedure. Everyone understood that what I have been going through was traumatic and emotional enough and that it wouldn't have been appropriate for me to go ahead with the procedure.

This is a shorter-than-usual post, for me, at least. It was really difficult to write. It has actually taken a few days to put into words what's been happening, but now I've completed it. It's going to be a difficult couple of weeks as you can imagine.

Second Stent

As a result of the myocardial perfusion imaging test, which was done at the John Radcliffe Hospital in Oxford a couple of months ago (described in great detail in an earlier blog post on here.) I have been booked in to have a second stent fitted next Wednesday, 12th December. I have to be at the hospital for 7.30a.m., and I'm being taken by someone from church who has kindly offered to drive me there. I couldn't have driven myself, for one thing, I don't think the stress of the journey there at that hour would help, and, secondly, I wouldn't be able to drive back home because of having a local anaesthetic as well as other drugs and the possibility of the wound that would be made when the stent was fitted. I had a telephone call from the hospital yesterday morning to tell me I'm on the morning list, which means the procedure should be done at some stage during that morning. I have to remain in bed for at least two hours afterwards and can then be discharged. I did wonder whether I would need to stay in hospital overnight, but not this time, fortunately.

As with this sort of thing, it's the waiting which is the worst part. I don't generally like needles, giving blood and all that sort of thing. I have explained things regarding this in an earlier blog post. When I had my second heart attack in early September this year, I was rushed off to the John Radcliffe and there was talk of 'stents' on the ambulance as we drove at speed towards Oxford, but at that time I didn't really think of what was going to happen. Little did I realise, once I arrived, I would be in the operating theatre (I don't think it's actually referred to as that, but never mind) and having a stent inserted in a vein in my right arm. Not a lot of time to think about it, really and truly.

It's been a really wet and windy day today. I took Alfie out for his walk as usual, but I had to put my waterproof jacket with hood on before venturing forth. It had been kept in the back of the car for such an eventuality, so I had to nip out and get it before taking Alfie out. We didn't do the full circuit of Eaglestone Park, because he was getting soaked (not surprisingly), so I decided to cut across the park and make a short-cut back home. He shook himself, as dogs do, to try and get rid of the rain from his coat.

Carol not in a good state when I visited her this morning. (Friday) She's given so much pain relief that she's really out of things a lot of the time. I helped give her breakfast, which was porridge. I would never have believed that I would be feeding my wife in a care home bed. I have mentioned in some of these posts how I worked as a Support Worker for people with learning disabilities, working mostly in homes around Bedfordshire, mainly those run by the N.H.S. as well as being a Home Carer in and around Milton Keynes, but it would never have occurred to me that I would be caring for my wife in such an environment as that. I don't think that she even knew I was there this morning. She was talking some of the time, but not a lot of it was exactly lucid. She was going on about 'The Boys.' I thought she meant her sons, Daniel and Sam, but then I thought, perhaps she means Eddie and George, our grandchildren. She thought they were visiting, but they're not scheduled to visit. She wasn't sure what time it was, and forgot she had breakfast. This whole situation is really difficult. She prefers to lie on her left side, which had been decided when she was at Willen Hospice, but for some reason at Castlemead, the carers had her in bed, lying flat on her back. I said that I didn't want to mention this, but I had to when they came into the room and so they managed to roll her onto her left side, with pillows to prop her up. They told me that they were only doing what Carol wanted, but it seemed to me that at the moment she was really unable to explain properly. Not that I want to interfere but I do want her to have the best or at least what will make her more comfortable. I know that they've managed to get the pain under control, but do at least make sure she's comfortable in bed. She wanted to get out, which she had done at Willen, and managed to sit on the edge of her bed and, with some help, walk a short distance around the bed. But a nurse came in and said that she ought to stay in bed. 

Carol Moves to Castlemead Court

On Sunday, when I visited Carol a good deal later than I usually visit, I learned that Carol was moving to Castlemead Court in Newport Pagnell. One of the nurses came into her room at Willen to say that transport had been booked to take her there and I would need to start packing her belongings as there wouldn't be room on the ambulance for more than one bag of things, so most of her belongings would need to be transported in our car.

On Monday morning I was told that there would be an ambulance to take Carol from Willen Hospice to Castlemead Court and that it was booked for between 11-11.30 a.m., but they didn't actually arrive until about 1.30. Carol missed lunch, but she had a bowl of soup. We'd managed to pack up all her belongings into several carrier bags which were put in the back of the car. Carol was transferred from her bed onto a stretcher by the paramedics and wheeled out to the ambulance. I drove off out of the carpark and I soon caught up with the ambulance as it left Willen Village and managed to follow it all the way to Newport Pagnell and I was surprised how close it was to Castlemead Court, probably no more than two miles.

On arrival at Castlemead the paramedics unloaded Carol on the stretcher and wheeled her into the unit and I followed with as much of the bags as i could carry and took them into the unit and into the room where she was ensconced a few minutes before I arrived.

It's a friendly enough place, Castlemead. Carol has learnt that she is the youngest person there. A lot of altzeimers sufferers, people in wheelchairs, a lot of screaming and someone calling out constantly. Carol prefers to have her door open, but it's sometimes necessary to close it when there's too much noise. She has been asleep or at least very drowsy when I have arrived in the morning and she's usually being given a wash and the bedding changed when I turn up, so I have to wait in the lounge area, which is just opposite her room. Plenty of armchairs to sit in and a large-screen television. They have put up Christmas decorations. You can always go into the kitchen area in the dining room to make a cup of tea or coffee and Carol gets a choice at meal-time. I generally help her eat her breakfast or lunch. There is a menu on the wall along the corridor so you can always check what there is for each meal, all prepared fresh on the premises.

The big issue I have with Castlemead is finding a place to park. I find if I get there early enough, around 10 a.m., I can usually park easily. On Wednesday, when I drove over from Milton Keynes, I have come via Willen, along Brickhill Street, but that day there I found out until far too late that the road was closed so I had to drive towards the city centre and go via Monk's Way, the road that goes towards Chichley and Only, and cut through to Newport Pagnell along the usual road I take into the centre of the town. Just annoying that I wasn't informed of the road closure earlier and had to drive several miles out of my way.

Staff are allowed to bring their dogs to work. So there can be a couple of really delightful dogs running about the unit. One, called Charlie, does tricks. You have to know the hand gestures that will get him to 'sit' or 'roll over,' and then give him a treat out of a box which is kept near the television. Carol loves him, and he was put on her bed to stroke. A really good way to motivate residents, in particular, those with alzheimer's. On my first arrival when I was viewing the place last week, I was greeted at the front door by a little shitzu, which was one half of our dog, Poppy, who was a cross Westie/ Schitzu. It barked at me and kept coming up to me and then when I arrived on one of the upper floors I was greeted by two, what I think were pugs. I think Charlie is a pug, but I'm not exactly sure.

Carol Moving From Willen Hospice

Last Friday we were told by one of the doctors, that, because of the fact that Carol's pain had been got under control she would need to transfer to a new place of care. This came as something of a shock to both of us. They began the process of finding suitable accommodation and first they needed to get funding her her new care package, wherever it was likely to be. There was the option for her to return home, but we discussed this and it would be impossible for her to return home. The house is not suitable, she would need a bed in the lounge, which wouldn't work because of the size of the room as well as the fact that there is a large bookcase which would be in the way of the door which would prevent the use of a wheelchair, as well as steps in and out of the front door and the layout of the rooms would make access virtually impossible. She wouldn't be able to use the upstairs bedroom, because of mobility problems. So a suitable care home which could provide similar nursing care as Willen Hospice would be a better option. It seems Willen is only set up for short term care of around four to five weeks and she has been there for at least five weeks.

On Tuesday, when I got home from Willen, I got a telephone call from something called Continuing Care, telling me that they could fund Carol's transfer to a new care home, called Castlemead Court which is in Newport Pagnell. A lady at church had said that she would be willing to go with me to check out places for Carol, so we decided on visiting on Thursday morning, after which I would decide, in consultation with Carol, whether this place was suitable. Carol wasn't too pleased at the news of having to move away from Willen, understandably. A bit of s shock, basically because she's got used to being there as well as building up relationships with the nursing staff.

On Thursday I went to see Castlemead Court. I really liked the place. On arrival, I was met by a little dog, a bit like our Poppy, barking at me. Then, when we were shown upstairs to the unit on which Carol would be, there were two more dogs. They sniffed at me, obviously picking up Alfie's scent on my clothes. Then the two dogs followed me around as we were shown around the property. The individual rooms are spacious, a good deal larger than those at Willen. The place has a more homely feel, less institutionalised or like a hospital, which, basically, is what Willen is like, although it has a lovely calming atmosphere. So I decided that the place was suitable for Carol's needs, her care wouldn't change from what she is getting at Willen, along with all her medications as well as having a hospital bed.

On being taken back to the reception area, I was given a brochure and more details about Castlemead, with photographs and descriptions of the place, which I would give to Carol to look at when I visited on Friday morning. We discussed the move to Castlemead and she agreed that it would be a pleasant enough place to transfer to. One of the doctors came in and we discussed Castlemead and Carol's moving there and the doctor said that he would contact Continuing Care to start the ball rolling for Carol to transfer there from Willen.

(Wednesday) I took Alfie out for his morning walk (More like a gallop, as he hardly walks when let off his lead.). There was a slight drizzle as we got out into the road, and it seemed to get heavier the closer we got to the grassy area where I let him off his lead. So I had to make the decision to cut short the walk and not do the usual circuit of the park, cutting across the grass and back home along the path back up to our house.

(Thursday) Well, I know I keep repeating myself, but it really doesn't matter. It's because we follow a routine. Alfie didn't want to miss his walk, even though it was barely light when we ventured forth this morning. I did stick my head out the front door to see if it was raining. It wasn't. It rained during the night, because I could hear it rattling on the windows. We did our usual circuit of Eaglestone Park. I was determined that we did. Some 1513 steps, according to my step-counter. On the way round we saw a lady coming out of her house with a dog, I think it was a Basset hound, one of those low-slung dogs with droopy ears and a long tail and black and white. I'm thinking of the character of Fred Basset who has his own comic strip in, I think, the Daily Mail. What caught my eye was the fact that he had a string of blue Christmas lights around his collar! Very original and very clever. I have never seen this before. Must have been battery powered. I don't think the doggy was interested in being friends with Alfie, who almost always wants to say 'hello' to every dog, whatever its size or shape, that he encounters.

This morning (Friday), when I was visiting Carol at Willen, I got a telephone call on my mobile, from Continuing Care. It would appear that they hadn't been contacted about Carol's transfer to Castlemead, but I gave my consent for them to make arrangements for Carol's move, which, if all the paperwork gets sorted by the various departments, this should go ahead early next week.