Looking after my 'Grumpy Ol Man' (GOM)

2007-08-29T19:26:00.000+01:00

Recovery since GOM came home has been good. He has reached a point where most mornings he can pull himself up to standing with out any assistance. We have had a review of the home care package and, because he is doing so well, we want to try to incorporate more standing, so we're going to try for showers every day.

WE got into town together for the first time today. I had to push him in his chair, his back muscles are not strong enough to use the trike. The one time we tried, a few weeks ago he became bent over sideways on the return journey, so we need to give it a bit longer before we try again. We've arranged for him to restart his gym sessions on Tuesday so hopefully he can cope.

2007-08-08T17:05:00.000+01:00

Met Physios on Monday and they took the rotunda.

They'd already done some work with GOM before I got there and he hadn't been too bad. Noticed that they've marked the 'white board' with a discharge date of 7th August.

Towards evening visiting gom asked to used the commode and instead of the hoist we managed with the rotunda although the hoist still had to be used to get him into bed as it was too high with both mattresses to use the rotunda.

Tuesday morning I went into town and did some shopping and when I got back had a call from the hospital to say that he would be coming home. The transport would be able to bring the rotunda, so I wouldn't have to go up there. He arrived back about 2pm

There was a bit of bleeding after I changed the leg bag over but it cleared. Then when he went to bed I saw that the wound had been weeping quite a bit (probably chaffing on his undies), so got some disinfected water and bathed it with cotton buds. It seemed to be ok after that until Wednesday morning.

Transfers have been going very well, but his legs are super sensitive and react to the slightest touch, so it's difficult for him to stand for very long periods - even with support.

This morning the wound was very 'mucky' again with a bit of blood in the discharge. Bought some Melolin sterile dressings from the local pharmacy, but the the district nurse came later and she brought dressings and things with her so we should be ok for a while.

The home care is back with us for morning sessions, but we have deferred showers until monday to see if his legs settle down a bit.

He could also be getting a bit constipated so have given him something for that otherwise everything seems to be going very well.

2007-08-05T13:15:00.001+01:00

GOM went in for his op on Thursday

Patient transport let us down again and didn't turn up until 12pm so we were an hour late getting there. The admissions letter requests 11.30 am.

Once we got there all seemed to be going well, but they didn't have the special bed ready for him and they initially thought that it was on the ward where he would be going after the op, but when they tried to get it moved to the admissions lounge it didn't arrive in time for his op.

The registrar had said he would be first on the list so he should have been ready for 2pm but he was still dressed and in his wheelchair when they called for him from theatre. It then became very rushed to get him into a normal bed, undressed and down to theatre, but they said he would be tranferred to the other bed when he got to the ward. I walked his chair and bag down to the ward and then came home.

Phoned the ward at 4pm and he was back and ok, so I went back for evening visiting at 6pm after which I spent time trying to chase up what had happened to the bed as they hadn't moved him to it and he was looking very uncomfortable as he kept slipping down.

Got call at 9.30 am to say he was ok to come home and they had booked transport for 4pm, but they hadn't arranged for any physios to see him and I said that they needed to, but they disagreed. Anyway when I got there he was still in bed even although I had been told he would be up and ok soon.

I then had to search out the sister and press to get a physio to see him as we needed to know that he could stand to tranfer when we got him hom. In the event they didn't have the right equipment so the trial attempt to get him out of bed was a disaster, and they agreed that he would have to stay in for the weekend. They also hadn't done anything to getting the profiling bed (because they obviously thought he wouldn't need it if he was going home), but eventually by saturday morning it arrived.

Hope everything is going well when I get up there at 2, but boy is it HOT

2007-07-07T09:42:00.000+01:00

All has been going well wtih the new agency.

The lady comes in on the dot of 8.15 or some days even 8.10, so I've given up on trying to wash and shower myself before she comes.

GOM managed to stand well on his three shower days which as predicted takes 40-45 mins. While gom is shaving etc she does the bed and we have a chat or if there are any other tasks she just 'dips in'.

Have had to chase the county council as they've issued a bill for June for gom's care which of course we've already paid the agency, so don't know why they've issued it.

But the hospital's Care manager sounds pretty useless, so it wouldn't surprise me if he didn't tell the benefits department that he'd set up an agency for gom's home care.

When I contacted the social care manager about the additional equipment, I discovered that he'd closed the file down so that gom wasn't listed as an 'open' client to the social care manager. We've been with her for three years and she always keeps the file open because gom's care is ongoing and changeable. But talking to others it sounds as though the hospital staff are 'laws unto themselves'. No one is surprised by their actions.

A girl from the rehab unit comes in to work with gom on some exercises.

Friday 13th we have to go to the hospital for the pre op assessment. Transport has been booked to get us their, which will be interesting. Ideally I'd like to follow with the the car, but I've been booked in as an escort.

2007-06-29T14:28:00.000+01:00

Didn't realise that so much time had passed since the last update, so much has happened since then and not all good so it's not easy to know where to start.

Summarising might be better and using the old hindsight as an aid.

Once gom finished his antibiotics, more problems came to light and we discovered that he'd got one of the 'hospital acquired' super bugs, C-Dif. Which explained the hospital's changed of heart about sending him to the rehab ward, as they must have known about it before he came home but we'd have a hard job proving negligence, and I don't really have the energy for it at the moment. Also the doctor's expresssion when I started to talk about treating infections at home also explains a lot, although I wasn't in a position to understand at the time, but he must have known or suspected that he may have been sending gom home with an infection of some type. The reports in the paper stated that the wards were closed from 4th May, but we know they were closing the unit to new admissions on 2 May, the Day that they changed their mind about sending him to the rehab unit.

We saw the neurologist eventually and it was agreed to get the op for the suprapubic catheter as soon as possible. Contacted the Urologist and he booked the admission for 2nd August.

The Home Care team continued to come in three times a day until the end of May, when they decided to hand over to an agency. This was where more troubles began.

We gave the Care manager at the hospital the name of a preferred agency that had been recommended to us, but he didn't come back to us and say they didn't have anyone available, instead he contacted another agency with our our knowledge and THEIR manager contacted us.

All seemed well initially, their rates seem reasonable and they were pro rata for 30, 45 and 60 minutes. They introduced a male care worker to come in the mornings (between 8.30-9am) for washing and showering and a female for the evenings (between 9-9.30pm) to get help get gom into bed. She had her own transport and other clients before and after us, but the male only had us and he was dependent on public transport.

We were only expecting to have the male for 30-45 mins a day, but from the beginning he kept insisting that he stayed for the full hour. I had an argument with him that we hadn't agreed to the longer time but he was insistant, so I contacted the manager and she agreed that he should only book the time that we needed him and I should sign the time sheets accordingly, however the second week he continued to book the full hour instead of a maximum of 45 mins so we decided to cut down the number of days to just 5. As he continually hung around trying to find additional tasks to justify the time, I made sure that there weren't any, - I was able to get gom up, and in the bathroom and I made the bed all before the guy arrived (usually after 9am) but he still sat around for up to 15 mins after he'd finished just writing up the notes.

By doing as much as I could before he arrived I was able to cut the maximum time down to 35-40 mins but the guy still insisted on claiming for the full hour on the days that gom had a shower, although thankfully, on the other days (when he was only here for max of 20 mins) he only claimed for the minimum 30 mins. The girl in the evening was great, but then her car broke down and she became dependent on Public transport, which given the lateness of the hour was not acceptable.

I gave the manager 2 weeks notice that we would start phasing out the care on 2nd July, with the guy only coming in three days a week for showers. But then the attendance of the evening care worker got worse so we gave notice to cancel it all together. Then the morning guy didn't turn up either so we gave notice to cancel that as well.

I contacted the social care team because if I was going to do it all myself I would need more equipment and was given the name of a more locally based agency. I contecde the manager and arranged for them to do their risk assessment the next day, but then the other guy turned up again so when he'd finished we told him he wouldn't be needed again which once again he argued about.

The new agency were engaged and the new care worker was booked to start between 8.15-8.30, which was good for the first day as we had a hospital appointment and needed to be ready early.

I got gom up just before 8am and he was in the bathroom when the new lady arrived at 8.20-8.25 (she'd got a bit lost). We tried for a shower, but gom couldn't stand, so he had a strip wash instead. We were nearly finished at around 8.40 when the guy from the other agency turned up AGAIN. I didn't answer the door to him as we were busy with gom but he kept hanging around. Eventually I answered the door and told him he wasn't needed, but he insisted on coming in to sign the books which I thought he'd taken with him the previous day. He was adament he hadn't but it wasn't here so he must have done so and I suspect he had really because he knew that I'd altered the times on some of the sheets. He eventually went and we haven't seen him since. The old agency then contacted us to ask for two weeks notice in writing but gom wrote to them pointing out that their contract only required 24 hrs notice and we had already given them that.

The woman from the new agency regularly turns up at 8.15 and gom is washed and dressed by 8.40, even when like this morning I had trouble getting him out of bed and she had to wait for him to do his teeth etc before she went in to help him with his back and other private parts. In this waiting time she helped me make the bed, we chatted and she then helped me fold some washing. She has five clients in our area and doesn't need to go to her next one until 9 so we have enough spare time to cover for any problems without worrying that we are holding her up.

Their rates are slightly higher than the other agency but we are getting better value for money, so we don't mind. It also means that I don't have to rush around and get myself showered and dressed before gom gets up.

2007-05-06T10:41:00.000+01:00

Things all changed after Monday and they decided that rehab could't do any more for my GOM and he would have to come home with an enhanced care package.

What they initially offered us wasn't acceptable - only home care, physio and catheter maintenance, but after a bit of a battle they also agreed to write up a standby supply of antibiotics. We had evidence to back up our argument as when the infection re occurred when he was at the rehab hospital, there was less of an impact on his system because they were able to treat it immediately, but when he's at home we would have to wait to see or speak to a doctor, and this delay could result with him ending back up in hospital, which no body wanted.

He was discharged on Thursday afternoon and the home care assessment restarted on Thursday night. It's the same team as before, so they know how good he can be, and they can see the difference between then and now, so hopefully they will keep the assessment going until he's reached something near the mobility that he had before he was admitted for the second time.

Friday he was able to transfer and move quite well, but Saturday his upper body strength was quite poor so it was quite evident that he'd suffered a bit from his activities of the previous day.

Have set up an old portable tv in the bedroom, as they usually come in to get him ready for bed between 7pm and 8pm, but he doesn't like to lay down that early.

We have the district nurse lined up to come in to see David on Tuesday. They have ordered a spare supply of catheters and leg bags, although they were able to drop off a few spares of the leg bags (albeit smaller) for us on Friday.

Sister in Law came down for a visit on Friday and sat with him while I went into town to get some provisions. She has booked an appointment for us to see his neurologist privately on 14th May. On NHS we couldn't see him before 27th June. We want to see if we can begin a course of treatment to stabilise the ms, in an effort to reduce the impact that these infections have on his system. We will then try to bring forward the operation to fit the other catheter, as this will also reduce the risk of infection. Therefore attacking the problems form both sides, instead of just treating the symptoms of any infection as they occur.

2007-04-30T23:48:00.000+01:00

Quite an eventful Day today.

GOM feeling down for obvious reasons, he had declined breakfast because there was no one to feed him, so to start, I had to go on a hunt for a bowl of muesli.

Then I had an argument with a nurse because the doctor had decided to take out catheter (no problem with that) only the nurse couldn't tell me if was to be replaced. I had to insist that if it wasn't there would be other consequences, so she got the agreement that a new one would be put in.

Then he had to go for an Ultrasound scan of his kidneys, chest and bladder. Then finally he saw the 'in house' physio who agreed that for 'continuity of care', if it was confirmed that he needed more rehab, they would try to get him back to the hospital he was discharged from last Tuesday.

Oh and because initially his bed was a third bed squashed in between 2 beds, as soon as another bay was vacated I asked for him to be moved because, with his wheelchair, he needed more space.

2007-04-27T10:12:00.000+01:00

GOM finally came home on 24th April, athough he very nearly didn't make it when he couldn't transfer to the car. Had to go and get the ot's to help him get in. Transfer at home was easier but not without its problems.

Care assessment team started coming in from 25th to give him a shower. On the first day he had to stay in bed until they arrived (quite early - 8.30), but since then I've been able to get him up.

They've decided that he needs two care assistants for the moment, but this also means that he will be an early appointment. We've also told them that we would like the early appointments to continue as he needs to have his physio sessions around 10-11 am so this seems to work on all fronts as they can have him ready in time.

Wednesday and Thursday he was ok with his morning transfers, but this morning he felt a bit sick so it was a bit of a race to get him up before he was sick but we made it and he was up before the care assistants arrived just after 8.30. Yesterday he was up and eating his breakfast when the girls arrived around 9.00.

He's managed most of his afternoon tranfers so far, but the evening one last night was a bit of problem and he had to spend the evening in his wheelchair, which also made the transfer to bed a bit more difficult as the wheelchair seat is lower, but we're managing after a fashion.

There was a bit of a cock up with the referral to the district nurse and it went to the one who covers a different part of the area, but I had the contact number for the correct one from previous visits so was able to contact them to arrange for a new supply of the night drainage bags. Need to contact our local pharmacy later to see if they're in.

2007-03-02T18:26:00.000+01:00

Got to hospital on Tuesday to find that gom has started being sick. Couldn't keep any food down and for a while no water either.

Thought initally it could be because they'd tried taking him off the anti biotics. They re-instated them on Wednesday night and I'd hoped to see an improvement when I went the Thursday.......

Only I didn't make it - early hours of Thursday morning I started being sick, then the diarhea started. Could this have been what gom had ?

Later in the morning I managed to take some dried bread, and then about lunch time I tried a banana but that promptly came back :(.

Later managed some baked apple and then for supper I had some mashed potato, both of which stayed down. Then this morning I managed some cereal and coffee so things seem to be back to normal but still got a bit of a 'fuzzy head' so haven't been to the hospital today either.

Gom's sister was going anyway so just stayed at home to get better for tomorrow and thereafter.

2007-02-26T22:51:00.001+01:00

Boy what a couple of weeks we've just had.

That last Monday (12th) night was a really bad night and on Tuesday (13th) had to call out the gp who subsequently had GOM admitted to the medical assessment unit at our local hospital.

GOM had become quite dehydrated in the night and gradually became unable to take any water (fluids) orally.

Arrived MAU by about 2pm and the after he'd had all the examinations they finally got him onto iv saline and eventually a catheter. Moved him to a side room and I left about 11pm to come home

Wednesday got up there around 10am and there started a nightmare day - some 'prat' of a doctor decided to stop the iv saline because he thought gom was taking enough fluids orally but even an amatuer could see his urine was the wrong colour. Very worried when I left him about 8pm and had another bad night.

Got up there a bit later Thursday (10.30am) and saw that he'd been put back on iv saline some one had obviously seen some sense in the night. Different doctor (more senior?) and the change in his condition was noticable throught the day. hey even decided to get him out into the chair whcih wasn't a great success as he kept slipping out but.... He also still needed to be fed and helped with drinks but he was so obviously getting better. Again left about 8pm but had better night

Friday he was ready for them to move him to a rehab hospital where he's been ever since. Still on catheter, but he's so much better. He's regained most of the use of his hands, but he's still fairly weak from the waist down. He has some movement in his left foot but nothing in the right and needs more that one person to help him transfer. He washes himslef now and can use a razor safely but they have to wash his back and 'nether' regions.

He's had an xray of his neck and scan of his head just to make sure that it is just the ms and there aren't any other underlying causes. Just got to wait for the physical rehab to start - usual story of understaffing.

Been trying to keep my visiting to a minimum but still going every day, need to cut down as they are taking care of him unlike at the mau where I had to do all the non medical care.

Need to give my back a rest from those stupid plastic stackable chairs

2007-02-12T22:43:00.001+01:00

GOM had a bad night last night - following on from a bit of dodgy day on Sunday.

During Sunday he went down in the bathroom again, but got him onto a mat and dragged it (and him) into the bedroom where eventually we got him onto the bed.

This however had the effect that he was weaker during the night and rather that get up to use the commode he pee'd into his pad/pants, but instead of waking me when he'd finished to change everything he went back to sleep, consequently I think he may have got some sort of infection - he said he felt a bit queezy and had a temperature.

Anyway I changed him, gave him a bed bath and a bit later than normal got him up and everything seemed ok, he had breakfast - cereal coffee banana and actimel, and pottered around on the computer.

The carpet fitter arrived to do the lounge and then the nrs man came to sort out hand rails. When csw arrived, I took my time out after explaining that gom had been a bit poorly.

About half an hour after csw left, he went for a pee but then felt the need for the other but in trying to turn round he went down, this time I wasn't taking any chances. Called the personal alarm people again and they got the paramedics.

They checked him over and felt he was ok. He had begun to shiver (from shock?) in the bathroom, but after they got him into his chair they checked his bp etc and everything seemed to be ok so off they went.

Social care team were here at the time too as they had an apppintment to assess him for a lifting device, so they were here for a while after medics left and gom started to get a bit drowsy so we deferred assessment.

Eventually gom was sick and then went to bed where I made him stay. Making use of the urinal bottle that we bought ages ago - I won't let him get up incase he ends up on floor again. Anyway I'd better get off to bed as I'm likely to have a disturbed night. :(

2007-02-01T22:30:00.000+01:00

New year started with the 'wrecking crew' coming back on 8th and except for the weekends and one other day they've been with us ever since.

Bathroom took longer than planned (11 instead of 8 days), but it's worth it. Just waiting for the flooring guy to come and lay vinyl.

They've been working on lounge now for 5 days. scheduled to take 10 so we seem to be on target. Some of the changes didn't work out though - they couldn't get the coving off to change it - it had been stuck to plaster which had been moulded around the coving.

Fireplace and grate has been removed and hi fi cabinet has been built to go in the new cavity. Preparation should be finished by this weekend so they should start the painting the walls next week.

Unfortunately on the personal front, things not too good.

David had a bad transfer from the loo on monday night ending up on the floor. From where we couldn't get him up and he somehow managed to almost rip off his small toe, also fractured it. We're just playing a waiting game to see of he will lose the toe or if it will heal by itself. The tear couldn't be stitched, only dressed.

Under the fracture clinic at mo, but they want to wait another week before they do anything with the dressing. Not allowed to get the foot wet so need to sort out showers. Typical, just get the new shower sorted and David can't use it ;O

2006-11-30T21:43:00.000+01:00

WOW.... Two whole months since I last got round to posting on here.

Things on the decorating front haven't exactly been going to plan, however I did get the storage unit emptied at the beginning of October. I also treated myself to a new full sized bicycle. Have kept my little foldaway though... just in case :O.

One of our neighbours moved away down to dorset the first week of october, but we haven't actually got to speak yet to the new family that moved in. She is one of the daughters of another neighbour, so I'm not sure if I got to speak to her when we met her parents.

We got the paving at the back finished and had the new gate etc fitted, but our neighbour has decided that he doesn't like what we've done to the bank outside the gate. When we moved, in March, it was all overgrown, so we tidied it up - he'd previously put decorative blocks along the edge and had put some plants into it. We'd dug it over and replanted, which he seemed pleased with, but certainly made no negative comments about it, but it now turns out that until his daughter moved he hadn't been able to use their garage as the daughter had been using it for storage, however once it was usable again they couldn't turn it their garage without clipping the blocks so asked me to alter the bank and path to give them sufficient turning. I'd had plans to change the path anyway once the inside was finished to make the path wider for GOM's wheelchair, so I didn't forsee any problems, he didn';t undestand that it was a'work in progress' and even when I did make a start, I didn't get as much done as I wanted as my old back problems came back and have since prevented me doing any more digging. I need to find someone to finish it off for me as I still have a quite a few hedging plants to go in too but haven't got them in. If I don't do it soon I'll lose them to the frost.

The original plan was to start the internal decorating at the beginning of October, but because the fine weather held, the contractor wanted to stick with the external work and get it finished. This put the internal work back so we had to reschedule and at the beginning of November started work on the kitchen instead of the some of the other rooms. This turned out to be more involved that originally planned as certain things came to light as it progressed, so we ended up with new base units and a new sink etc, still glad it was done unfortunately this meant the job over ran by 2 days and our contractor had to leave us to go off and do a 'small' job that was only supposed to take one day however this stretched to two days and then he went down with a bad dose of flu, which went on for TWO WEEKS. Finally we got him back this week, but it means that only half the rooms that I wanted looking presentable for Christmas (and GOM's birthday) will have been finished and the bathroom that was scheduled to start on Monday (4th) won't get underway until 8th/9th, and it's touch and go whether it will be straight by the break. We've been promised that the suite will be in even if the tiling isn't finished.

We had the new flooring scheduled for last week too which meant that only part of it could be done - the vinyl has been laid in the kitchen and hall but the carpet for the office/dining room had to be rescheduled and should be done on Monday

2006-09-29T20:26:00.000+01:00

GOM had his ultra sound scan at the end of august. He needed to go with a full blader so he had to drink 2 pints just before we left. Appointment was 1.45pm but they didn't come out to check us in until nearly 2pm by which time the poor little fella was BURSTING :O

Anyway finally got him in and had his first lot of scan's then it was SUCH A RELIEF, he could go and relieve himself, more scans but the pressure made him want to go again so finally had his last lot of scans and he was finished. We'd been lucky too with the parking at the hospital.

Went for the results last wednesday. Mainly good news - no infections in kidneys and bladder however the bladder is quite enlarged - holding 800ml instead of 450-500ml. Have had some meds prescribed which should hopefully allow the bladder to shrink back to normal size.

On the refurb we were away for about 8 days , and the electrician used the time well and worked long days and got everything finished by the time we got back. however inspite of him dusting round after himself there was still a fine layer of dust on everything, which took me a few days to get on top of, although I wasn't going too mad as we had all the decorating to get done before I could get straight, but have the main rooms dusted down.

18th September our other contractor came back and started to put boards down in the loft, this was due to take 2-3 days then he was scheduled to start work on the rest of the paving as long as the weather held. Unfortunately on day two he slipped, while up in the loft, and put his leg through the ceiling, so we lost a few days while he recovered. Made a start on preping on 25th and by the end of this week had the small front verge paved and most of the back garden dug up, cleared and ready for the new paving. They're having a break next week (2nd October) which fitted in with our neighbours moving plans, then they are back for a week - from 9th October during which if the weather holds they should be able to finish the back garden or else they will start making good and decorating inside.

That week I have also arranged for one of our storage units to be cleared - which was why we needed the loft boarded, so it's goint to be a pretty frantic week with appointments etc and we still have to try and fit in an appointment to see gp to get repeat prescription for the meds that the hospital gave us.

The contractor is then taking a break for another week during which I need to get the rooms switched round for the next phase of decorating.

2006-08-14T14:59:00.000+01:00

God where has the time gone - it's nearly THREE MONTHS and such a lot has been going on.

Front bedroom has been decorated and we have moved in although it's still housing the two spare mattress (4 ft and 4ft 6). Have moved the sofa bed out into the other bedroom and it currently has stuff stacked on top of it again.

Have retrieved all of our fans from storage - even though the front rooms are cooler than the back, it still got too hot during the July heatwave. Also retrieved the frame of the 4ft 6 bed intending to put it together only to find that I had stored the bolts in a box somewhere unknown in storage unit?? :( hence the mattress is still taking up residence in the main bedroom.

The new loft hatch and ladder are installed and the hallway decorated - have a new wardrobe acting as coat cupboard in place of the fitted ones.

We ordered a 12 yard skip to get rid of our rubbish to date thinking that we would only half fill it but we had enough in the end to fill it.

Still have all the books that I found in the loft, no dealer seems to be interested although some of them seem quite OLD. Have decided to keep these but not sure what I'll do with the others. There was over 100 and will probably keep about a third.

Glazing was done the second week of July, and it's made such a difference. Not sure we could have survived the heatwave without the new kitchen windows. Can still watch quite a bit of the wildlife.

Got the paving works started mid July. The plan was to pave the front garden then the front verge, then extend the existing small back patio, but at the beginning of July when we got the first water bill after the installation of a meter we discovered that there was probably a problem with our water main, so we deferred the work on the front verge and started on the back after the front garden.

Unfortunately it took the water board's contractor about three weeks to come round and decide that there wasn't a problem with their end, so now we've had to dig up some of the new paving in the front garden and have a new main put in. Cheaper that trying to find the old leak.

Then last week had the local tree surgeon family come round and get our greenery into order. They've taken down most of the silver birch (which had been badly hacked about and killed off by some unknown contractor) - just left us a 6ft 'stump' (as requested for our 'feature' gateway), have tidied up our fruit trees and taken away the honesuckle bush that was dominating one side of our garden. We've gained about 3m by 5m of garden at the back, although we can now see through next door's hedge so will have to re hedge our side of the fence when the time is right (about end of september). Then we had them tidy up the front, there was a laurel? that has been tidied up and massive rose bush by the front gate that has been cut back to just a tiny bush. It's left a big gap along the wall but I can get some more plants to fill the whole.

Finally we have the electrician lined up to do the rewiring at the end of this month so we're taking ourselves away for a bit so that he can 'crack on' and not have to worry about getting the power back at the end of each day.

That's all the catching up done..... I think

2006-05-19T21:22:00.000+01:00

It was a real 'mad house' here on Monday, the facia guys turned up first to 'crack on' and get the guttering finished, then the guys turned up to spray the foam, but they had to hang around for about an hour before starting as the other guys were still working on where the others wanted to run the hose in :(

They started about 10.30 and estimated about 5 hours to spray the foam - they told us afterwards that the area of our roof space is LARGER than a normal semi.

Then the facia guys discovered that they hadn't been given enough brackets for the guttering
:( They reckoned that the surveyor estimated for brackets to go every metre and not 800mm as they should be so they only got three sides done before they had to leave and get some more - the local supplier only had white NOT black.

The foam guys left about 2pm and the others then returned about for about 10 minutes to finish the last side.

Rubbish got collected on Tuesday, when we discovered that part of the lounge ceiling had been dented :( - they couldn't see what could have done it but later investigation by our builder discovered that there was a long length of twisted pipe up in the roof space that could have slipped between the beams and 'poked' a hole in the ceiling.

Our builder did his usual two days (thursday and Friday) and made a start on our main bedroom which is currently unusable for anything other than storage.

Yesterday he got the fitted wardrobes out and decommissioned an old 'built in' electric heater and we could see the full extend of what needed to be done - not too bad. Today he came back and stripped all the old paper off and made good - also sealed an old vent that is now 'defunct'. Then on his two days next week he will decorate using some odd rolls of paper that I have and paint so that we can move in there and hopefully GOM will have more room to get his w/chair nearer to the bed.

Glazing has been lined up for after the first week of July, so hopefully in the intervening weeks we can get the new loft hatch sorted and the rewiring and new pipework for the radiators planned.

Hoping to have my parents to stay for the Fathers' day weekend as our residents association is having their summer party where we can invite family - it may also be a prequal for my BIG Birthday in July :O

2006-05-14T14:34:00.000+01:00

Beginning to find all the little oddities of the building now.

After once having a house that was over 100 years old I didn't really expect things to be 'square' but it's interesting how deceptive the eye can be.

This is the floor plan and running in line with the tops of the doors is a picture rail that runs all the way round begining and ending at the front door. It looks all the same height so the problems must be with the floor.

The first three doors went on without too much trouble although one had to have a total of about half an inch taken of the top and botton but the other two needed very little taken off.

The next three were two standard room doors and one narrower 27 inch cupboard door.

One door took nearly FIVE Hours to put on and needed more than an inch taken off the top and bottom - so much in fact that the tools kept hitting the staples that are used to hold the door together. Our maintenance man blunted all his tools and broke his electric planer which was why it took so long as he had to do all the planeing by hand. In comparison the next door he put on was actually TOO SHORT and NARROW for the space and the only bit that had to be taken off was one corner where there was a telephone cable running through the door way. It's only the door stops that cover the gaps.

The only door left to do now is the one for the bedroom that we have to decorate before we can use it. There are fitted cupboards to come out so no point putting the door on yet until this room is finished.

Other work is now getting scheduled as they came to start the work on the roof last wednesday. But then things went a bit pear shaped on thursday when the team started to put up the facia and guttering when in reality they didn't know what they were supposed to be doing. A new teamed turned up on Friday and had to start again almost from scratch - in fact the team leader said it would have been quicker if they had started from scratch, but they didn't finish on Friday and left us without guttering - and yes, you guessed it, we had a torrential downpour on Friday night. They came back for a few hours on Saturday, but still didn't get finished so still no guttering. The guys are supposed to be coming on Monday to spray the foam insulation on the inside, so we'll have both teams working here. Should be interesting

Next Job is the glazing - we know the company - they did the glazing at the flat - so there shouldn't be any problems here and we need to get in a tree surgeon to sort out some of the trees at the end of the garden - but that's another story

2006-05-01T20:25:00.000+01:00

Finding muscles I didn't know about - it can only be because of the extra work caused by the move.

Latest is my right arm.

I'm supposed to 'help' gom with an exercise programme but with a sore arm it's not been possible as his legs are a 'dead weights' and it hurts me to just to lift them to do the stretches/exercises without even trying to push against his legs when they don't want to go :(

On top of this they can sometimes go into spasm when I've been holding them which has probably contributed to my problems.

Have had a couple of massages that have included some work on the arms which has helped a bit, but...... It also give me a good excuse to have baths rather than showers although showers at home aren't really viable at the moment because of the water pressure (hardly anything coming out of the shower head).

Managed to make some sort of inroad to the garden at the weekend - got a mower and got too the lawn - but it had been allowed to get too long and was a real struggle but got there in the end nealry started to have problems with my back again but I think I was able to pack up just in time.

2006-04-26T13:32:00.000+01:00

Been in our new home a month and WHAT A MONTH

Got gom up to his sisters on Sunday, then had the final pack up on Monday.

The BIG day (Tuesday) was fairly unevenful - but took longer that expected to load everything and the removals were still packing when our buyer turned up to say everything had gone through and he was ready to move in :(

This made the final departure a bit rushed and a few things got left behind, which apart from a barometer that was given to me by my late grandmother I can live without.

My back was beginning to suffer by Tuesday evening had never been on my feet for so long - most of Monday and Tuesday so things started to get a bit difficult to sort out. Tried to have a bath on Wednesday night but the hot water ran out - the valve from the feeder tank had probably seazed up - couldn't get the plumber on Thursday as I was going up to get gom, but got th plumber on Friday and he sorted out the hot water and also 'plumbed in' the washing machine.

Also on the Friday had to have an emergency deep muscle massage as my back was in a REALLY BAD way, it did the trick though.

Slowly each room has started to become functional and have got rid of the boxes. We're not in our first choice bedroom yet as the main one needs a bit of major redecoration so is being used for storage. The one we're using is a bit small but we've got the important bits in although it's not that ideal for gom to get around in his wheelchair, but he can just about managed.

Most of the doors were taken of as they had glass panels in them and would have been a hazzard. Three are being replaced 2moro and the others l8r.

We've had quotes for the work on the roof and for replacing the remaining glazing, then once this has been done we can start on the internal refurbishment. It's a toss up at the moment whether we have the kitchen or the bathroom done first. Both have issues but the bathroom is better decoratively than the kitchen so I'd like some remedial work done on this first as this is being used as our dining area, however the bathroom doesn't have a functioning shower - low water pressure means that the one we've got isn't much use and we still have to run water in the bath, then just use the shower attachment to rinse off- so this may be considered ahead of the kitchen.

Easter Sunday - the oldest radiator, in the lounge, decided to spring a leak - fortunately we were home and managed to get it turned off before too much water had soaked the carpet. Thankfully it wasn't too cold so we could live without the heat being on in the lounge

Got the plumber in to fit a new rad on Tuesday and this was when the carpet took a battering as the old rad was full of gunk which spat out EVERYWHERE :(

The garden is really getting going now. Need to get a mower and have a go at the grass at the back. A very nice neighbour is keeping the bit at the front under control as its a continuation of theirs so it makes some sense for them to carry on - they used to help the previous resident (an old lady of 95!!).

Have got quite a bit of wildlife . Goldfinches (previously only seen in books), Robins, blackbirds, sparrows, blue tits and I think there was a great tit too. Squirrels like playing in the many trees of various sizes :O

2006-03-24T23:35:00.000+01:00

Well we're going into our last weekend at our current place. Last meal won't be anything special - gom want's to keep it light ;O

Then sunday afternoon braving the roadworks on the M1 to get him to his sisters THEN I've got to do the return journey :( a few hours l8r.

Had our completion statements from the solicitors today with the bill for the outstanding fees and arranged payment.

Monday moring someone from the rmoval company is coning to help with the final pack up - hopefully if the weather is with me tomorrow I can get down the garage and get that end of it ready for Tuesday. I will then be able to do the bulk of the cleaning leaving me minimal to do on Tuesday.

Don't have to pick gom up again until Thursday by which time I shoukld be reasonably straight ..... HOPE?

2006-03-02T19:00:00.000+01:00

Move now stalled indefinately :(

GOM paid his mortgages off 17 years ago however the buyer's solicitors found an outstanding charge still against the flat for one of the mortgage companies. OUR solicitor hasn't been able to track down anyone from the company who can help - although it is still listed as a 'live' company the only 'occupants' of their registered office seem to be solicitors who are 'administering' the company - submitting annual returns - but they don't appear to be doing any business.

We are now getting DAILY 'phone calls from the agents marketing the bungalow and last night the vendor phoned to talk to gom 'Are we serious about buying the bungalow' OF COURSE WE ARE, but being scottish he doesn't seem to understand the difficulties of the english conveyancing.

OUR Solicitor has found a contact who is a senior? director of the mortgage company who is also a director of RBofS who we're hoping may be able to sort the mess out and write to the land registry to clear the charge as no one else seems to want to take responsibility.

In the mean time we are stuck here surrounded by packing cases and boxes :(

One up side is that we found an old building society pass book that shows two amounts going out of the account to pay the mortages, but unfortunately there is no payee details.

2006-02-17T21:47:00.000+01:00

still no definate news as yet about the move, but we r still assuming it will be on 28th. gom tried 2 get rodney 2day, but he'd only just got back 2 the office after a few days off so he couldn't tell us anything.

Had a frustrating night last night - gom as been advised to try to start using an 'independance aid' instead of getting up in the night to use the commode as it's believed that the number of times that he's getting up is possibly causing his problems with weakness and spasticity in the late afternoon/evenings, but he couldn't get on with it so we're going to leave it until he goes 2 stay with his stsister so that she can help him - she has a nursing background although she's in a a 'back room' field now.

We're also working on getting him to drink much more - he wasn't getting anywhere near enough to the recommended 2 ltrs which was also probably contributing to his problems. Have managed to find some 33cl drink bottles so I can make up some drink and am trying to get him to drink one of these about every 90 minutes (500 ml wasn't manageble, but 330ml should be) and being in bottles it's less likely to end up all over the floor if he knocks it over :(

2006-02-04T10:33:00.000+01:00

Oh well everything is back on hold again.

everything seemed to be 'bobbing along' quite nicely until last Tuesday when we had a call from the agent to say that our buyer's buyers wanted to move into his property by the 13 Feb. We can't do this as we won't be able to get David to his sisters - she's away from 9th to 19th.

He then came back and said could we do 6th or 7th..... NEXT WEEK - we said if the solicitors were ok then we supposed we'd have to. Called the solicitor he was ok, so wednesday I was ringing around all the various care organisations that we use.

Late Wednesday, we had a call from Rodney (our solicitor) for us to go and sign the contract(s) Thursday Morning for exchange on Friday (3rd).

While we were in signing, a call came in, one of the other solicitors wasn't ready - they now wanted 27th, but as it's a Monday, we said we'd prefer the 28th so that we can get David to his sisters over the previous weekend and I've then got the monday to do the last minute packing.
No more news yesterday so assume we're going with the new dates. So NOW I've got to ring round again on Monday and change everything that I arranged on Wednesday AAGGHH.

Also got to try and minimise the amount of space taken up by all the boxes that I packed up on Wednesday - at the moment I have two stacks almost ceiling high..........

2006-01-13T16:20:00.000+01:00

It's been a while since the last post but everything went very quiet on the move over christmas. However gom's condition has been going down hill.

Because we were at home over christmas we were able to have one gym session on the thursday, but the stairs are becoming a real struggle and the gym sessions are only now making a marginal difference.

Nikky from the rehab team came on 4th Jan for his 6 monthly assessment, and she basically told him much the same thing that I've been trying to tell him since .... Oh I don't know when :(

She told him off for not using the walker - said he was asking for trouble by not using it - the way he was relying on the walls and furniture etc was guaranteed to lead to a fall. She showed him how to get up once he'd gone down and YES exactly the way that I'd been showing him, but all I ever got back was a load of gab. She also showed him how to support himself when he transferred from seats etc to standing and back again. Although he managed it for a while he soon began to slip back into his old ways :(.

She also suggested he could cut down on the amount that he does at the gym etc, so this week we tried half hour sessions instead of hour long. On Tuesday he did upper body and core but he was significantly worse, on the day after, than when he does the full hour because then he always does legs as well. Then although he's weaker for the first 24hours, he does get stronger on the day after, but not this time. He did lower body and core on thursday, and he was significantl better today for having done some leg exercise sessions. So what we're going to try tomorrow, with the pt who comes to the flat, is a half massage (his shoulders get very tight because he uses them to move his legs) and some lower body exercises with weights

Still by far the biggest problem however at the moment is trying to get him to allow himself time to get to the toilet and to ask me for help if he's got a problem. We now keep the glide-about commode in the lounge, but he still insists on struggling to get up and go to the bathroom when he'll inevatably fall and then still not get there in time. But he will never tell me if he gets' caught short' and will usually sit around in wet pants and trousers unless I keep checking (usually my nose will tell me anyway). I'm very tempted to get the special pants or pads, but I know I'll have a fight getting him to wear them, but I getting fed up with having to wash his trousers nearly every other day :(

All I usually get when I tell him that he must ask for help is 'Oh you were busy and I didn't want to interupt' AAGGHH.. I only busy 'cause I'm NOT going to sit around doing nothing, watching and waiting incase he needs my help - it's not my way and never has been.

The other rather 'sweet' (if it wasn't so annoying) thing he'll hint at is that he doesn't want to be 'burdon'. He wants to do what he can while he can and leave me to have some 'freedom' while I can. But I can't get through to him that, that's what I WANT to do, to help him as much as possible, he shouldn't HAVE to struggle. He has always considered other people over and above himself, so I shouldn't really be surprised by this attitude, but I just want him to for once, FORGET about me and think about himself. I just wish he could break the habit of a lifetime and be a little bit SELFISH instead of SELFLESS.

Oh well only time will tell

2005-12-22T20:35:00.000+01:00

Got the confirmation today that draft contract has been issued for the bungalow - our solicitor issued draft contract to our buyer so we're on track.

Went out to the bungalow last friday with simon, our builder. He confirmed that there isn't any felt under the roofing tiles, which is going to be a major repair job, however he believes that there is an alternative option to stripping the all roof tiles off. There are some repairs to do - re pointing two of the three stacks, cleaning (moss) some of the tiles and replacing some (ridge) that are damaged, some of the ceilings may have to be replaced too - they're all softboard instead of plaster board, so we should really replace them all but...... Anyway, once this has all be done and we've rewired the place, we can arrange for insulation to be put in and there is now supposed to be a spray foam that can be sprayed onto the INSIDE of the tiles and seals them in the same way that roofing felt would, but we obvioulsy can't do this until all the external repairs have been done, as any tiles removed afterwards would break the seal.

He checked all the signs of 'damp' and it all seem to be 'old' - all dried out. There are some condensation marks on walls etc that will need to be cleaned, however there is going to be a MAJOR cleaning job in the kitchen. Some of the appliances have obviously leaked and have heavily stained the floor. We've asked if this can be resolved before we exchange. Havn't had confirmation yet.

2005-12-07T20:05:00.000+01:00

Today the surveyors report finally arrived, and was pretty much as we expected. However there does seem to be a significant amount of damp, but subject to what our friendly buikder has to say, should cause us any problems.. Most of the other stuff will be covered by any refurbishment that we intend to do.

He's valued it at 10k under the price that it was offered for sale, which must be his 'thing' as he did exactly the same with the first bungalow that we looked at.

2005-12-04T19:56:00.000+01:00

Things are moving along at a reasonably good pace.

We've now had the sales particulars for our buyer, and as of yesterday we've had confirmation that things are now moving on the bungalow. The previous occupant was apparently the aunt of someone who lives and works in scotland. He's signed of all the probate papers and is having the bungalow cleared 2moro so we may not be able to get the chairs that we wanted as he had ALL the contents valued for the house clearance so may not be able to pull them out of the deal.

Our surveyor went last weekend, but as yet we haven't had his report.

We've completed and signed all the papers for the sale of the flat, Rodney had only incurred costs of £234 on the abortive purchase of the other bungalow so he still has a bit of THAT deposit left, we've just had to give him the deposit for our sale and a bit more for the new purchase.

David's condition is NOT improving and some evenings he's virtually incapable of walking at all, although he still insists on trying but will always end up on the floor where he then gets really frustrated because he doesn't have the strength to get up again, what's more frustrating for me is that HE WON'T ask for help, he'll just sit on the floor until I end up searching him out, but I can't physically help, although I will usually show him how he should be trying, which he's always ignored although I've lost count of the times I've told him and he does it automatically anyway with out prompting when it suits him :( and when he thinks I'm not looking ;)

2005-11-21T00:05:00.000+01:00

Where has the time been going :(

Just after last post found that the surveyor's engagement papers had gone missing(the survey had been done on 12th, but hadn't received anything by 22nd so chased it up), then they hand delivered copies of the papers to the wrong flat but because they'd gone on holiday just afterwards it took another week to find out :(

When we finally got the report at the beginning of november, there was quite a bit of work that we hadn't expected - all fairly minor, but quite a lot of individual jobs which when you 'tot up' the costs came to quite a lot more that we wanted to spend.

The surveyor had given a lower valuation so we asked around for approx costings, initially to back up any request to bring the price down to the surveyors valuation, but we were working to a deadline imposed by the agent for the property at the top of the chain and time was running out. Finally our agent came back with some offers for our flat that were way down on what we needed, so we reluctantly chose to pull out of the purchase of the bungalow.. This was last Thursday. We managed to get hold of Rodney, our solicitor on Friday and discussed it with him, but GOM's health is paramount and as all this is having a detrimental affect, he agreed that we should cancel the purchase.

I'd done some more research last week when it looked like we might lose the bungalow and ironically had been to look at another bungalow on thursday afternoon before we found out about the offers for our flat (gom was supposed to be coming too but he wasn't well enough), so got back to the agent and have arranged another viewing for gom when he should be well enough on Monday.

We'd had a run down to look at the outside last sunday (13th) so knew it was accessible. When I went on Thursday, I had the wheelchair and it got in very easily. The garden path is well maintained AND there is rear access.

The bathroom and kitchen will need to be replaced, and only the two bay windows (lounge and Master Bedroom) have been double glazed. There are french doors from the dining room to the garden that will need to be replace, plus a large and small window in the kitchen, the bathroom window and the other bedroom. Also the kitchen door and the front door, which rather surprisingly is a single glazed glass door - a security risk, so will have to go asap..... if we get it
;().

Then because it's only a 2 Bedroom whereas the other had three, we will probably have a conservatory built from the dining room to create the extra room or extend into the roof,..... or even both :().

Went back for another look today to sort out where the rear access led to and sorted that out, and we went to find out where two other bungalow's were, but in the event, neither were suitable. Apart from being on a busy main road, gom didn't feel safe using the pavements that we would be using to get into town. Although fairly well maintained, quite a few of the driveways dipped, so it was like riding a switchback, which gom hated.

Better get off to see if I can catch up on the sleep I've been losing :(

2005-10-22T17:29:00.000+01:00

Prospective buyers still aren't prepared to make an offer because of the kitchen -we knew it would be probably be an issue but thought they may still make an offer under the asking price - but no, the kitchen is putting them off completely.

But there was no point in spending 000's of pounds on new kitchen units that someone would probably just come in and change anyway, so I went looking for some Fablon. Found some teak wood effect that I've covered the work tops with (the orginal was wood effect) - couldn't find anything in marble effect then went looking for something to cover the doors/drawers. Ended up with more fablon - this time in a cherry wood effect. Also got some matt black fablon to do the exposed cupboard ends with. Only had enough cherry wood to do the lower doors and drawers - there are 6 regular doors and one slightly wider door on upper cupboards to do but only had enough fablon left to do 5 doors so will leave them as white.

We have someone coming 2moro so we'll see if it makes any difference :(

2005-10-19T21:46:00.000+01:00

Still haven't managed to find a buyer for our main flat here, and now thanks to the abysmal solicitor who is acting for the buyer of our lavender hill flat, that sale has stalled just as we though we erer going to complete this week %(

We're getting calls from the London agent who is in turn phoning the buyer who is about to go into hospital any day now to have a baby.

Her solicitor is doing ALL THE WRONG THINGs and seems to be trying to shift the blame - she won't accept that she is wrong (the solicitor NOT the buyer), so our solicitor has given up trying to convince her she's doing it all wrong (she won't back down) he's trying to get the information that she wants but as some of it is more than 30 years old it's probably buried in some archives somewhere IF it even exists after all this time :(. Then she's doing other stuff 'back to front' and asking for papers BEFORE exchange that are normally NOT issued until AFTER completion.

She won't agree to pay certain admin fees that are normally liable as a result of producing the paperwork that she is asking for AND insists that they should be paid by us (the vendor) when that are normally paid by the buyer AFTER completion AAGGHH.

Then to put the icing on the cake (HA!!), she sat on the buyer's approved mortgage papers for SIX WEEKS before someone noticed that the names on the papers were wrong, so NOW they've got to be amended

2005-10-08T00:30:00.000+01:00

Went back out for a second view of the bungalow this afternoon.

Just wanted a second look at the furniture before we confirm that we want it.

The dining room suite is wonderful - table, 6 chairs, 2 carvers and matching display/cocktail unit that is TEN AND A HALF FEET Long 8)

The lounge suite isn't bad either. Three seater soft leather sofa, two armchairs (which ALL have a reclining mechanism - yes all sections of the sofa too) and matching footstools, it's looks like a dark terracotta colour

There are actually four pieces in the kitchen white goods ' tall' fridge, small freezer, washing machine and dishwasher. Then on a viewing of the garage (more like a barn) he asked if we wanted a large patio set - OK.

Going back for one more visit next week with our architect to look at what modifications we may have to do to the outside to aid accessibility.

2005-10-06T20:05:00.000+01:00

Monday viewed bungalow and 'thought I'd died and gone to heaven'. :()
Tuesday agent valued our flat
Wednesday agent took photos of flat, made offer on bungalow which was eventualy agreed.

Today (thursday) I had some time out to go and print our access group's newsletter, but morning was pretty frantic with phone calls.

I managed to sleep a bit better last night now that everything is more settled, but I've had a migraine 'lurking' all day :(

Have some prospective buyers coming round with the agent tomorrow while we're out doing our shopping.

Haven't heard anymore about the completion on Battersea but I still can't get David to contact the utility companies AAGGHH :(

2005-10-02T18:26:00.000+01:00

Had to make a detour from my normal route into town yesterday and just happend to glance in agents window. Saw a bungalow that I though had been removed from the market by another agent - the vendor was obviously just changing agents :()

Got the details and have arranged a viewing for Monday.

Once again it's at the top end of our budget and it's also just outside the borough, BUT it's within a mile of our usual haunts so we went out for a trial run this morning after our normal trip to pick up the Sunday newspapers.

It's got all the things that we are looking for - 3 bedrooms, two reception rooms, a south facing rear garden which seem to be mainly laid to lawn at the moment. The front has MASSES of 'off street' parking. It's not on a main road. There is a little corner shop/newsagents on the corner as well as a postbox.

We'll have to build or get portable ramps for the front entrance and from the raised patio to the garden, BUT as we live on a flood plain it's unlikely that we'll get anything that won't need to have ramps - everything's going to be built up.

The vendor is a retired widow who wants to go into a retirement home, so it's also likely to be in a better decorative order that the last one that we looked at where there was a young family with cats. The carpest were a bit threadbear and the windows would have needed to be replaced.

It's not clear yet of this has completely been double glazed, but there are some replacement units - front door and kitchen, so it should need too much work.

GOM had got his initial calculations wrong - he'd missed an addition, so we have more in reserve that he thought, so we may be able get a little bit done, but I still don't want to have to do much decorating. If it's ok in other ways

2005-10-01T10:25:00.000+01:00

The first bungalow that we looked at on 28th, looked fine from the front - the drive way was a nice size, but gom's ramp was a little big to fit the doorways so we elected to go round the back to use the french doors.

This was when the 'baloon burst' The concrete path was all broken and patchy, then at the end of the house and the start of the conservatory, the path way became small paving blocks set into gravel, so the wheelchair got stuck :(

Fortunately the promised rain hadn't come so gom waited in the garden while I walked round.

It had it's good points - level floors, wide doorways and hallways, but the carpets were a bit 'threadbare' and some of the roof window frames were in a poor state. We need a place that's in 'good decorative order' as we know we will invariably have to do some modifications outside for ramps etc so don't want anthing that's going to 'eat into that budget'. It was at the top end of our budget anyway, so we're going to have a hefty stamp duty bill to pay ontop.

Trying to get an appointment to view nearer town. It's smaller, and it's NOT a south facing garden, but they must get some sun as they have a pool in the garden %

We shall see

There is another place that we've been offered - which is a little bit OVER budget AND slighty out of our ideal catchment area, it's also a bit to close to a school :(

2005-09-23T17:56:00.000+01:00

Things are beginning to 'crank up a gear' with our impending move. It's been more than six weeks now since we accepted the offer on the london flat so I've started to search for properties locally so that we could have something lined up should we get to complete soon.

Found some real 'stunners' one of which was vacant possesion, however it turns out that even though they have the same postal address as us, because they are on the other side of the river they are in a different borough (river forms the borough boundary). This wouldn't necessarily be too much of a problem but it adds a bit to our journey time if we travel on foot/powertrike into town ;().

Have one property lined up to go and view next week, which is on THIS side of the river albeit in a different borough. It's still within 3 miles of where we are now though, so this has been an 'eye opener' how close we are to the boundaries with other boroughs -we sort of knew about the river , but were confused when the postal addresses were the same :(.

gom's condition is still very much up and down on a daily basis. Even though the weather is considerably cooler. We're still more or less sticking to the morning routine for everything we do. After his usual morning gym sessions he can invariable manage to get up the stairs in 'super fast' time (well for him it is), yet yesterday, we went out to a luncheon event at about 10.30 getting back about 3.30 and he really struggled to get up the stairs, and had a 'little accident' in the bargain :(

We usually take 'precautions whenever we go out by visiting the 'used beer department' before returning home, but yesterday even this didn't seem to help.

Today the 'used beer department' was occupied but he didn't feel any risk so we came straight home, but .... yep he got 'wet'. Then he went to work in the study and concentrated on the work he was doing that he left it too late and ended up leaving a trail before he reach the loo, fortunately the study has a vinyl floor but the rest of his route is carpeted :( So another change of clothes!!

2005-09-03T21:05:00.000+01:00

Blimey!!! where has the last month gone. Hadn't realiset it was that long since I've posted anything.

Still waiting to hear anything about the sale of the flat at Battersea Our solicitor has all the papers and has issed a draft contract.

I've got one final? trip up there 2moro to pick up the last bit of furniture. Couldn't get a van, but it should all fit in the Kangoo.

Packing has shifted up a gear and I've cleared one of our wardrobes and got it dismantled ready to go into storage. I came 'flat pack' because it's made of 'real' wood and has been stained, so the only way to get it out was to dismantle it again. It's the smaller of the 2 so I was just able to do it myself. The top was just ligt enough for me to lift off, but when we have to do the larger one, that takes two people to lift the top. Any excess clothes have been packed away and have gone over to the storage units. I've started renting a smaller ground floor one which makes life a bit easier, but I will have to starte putting the smaller stuff upstaires as soon as I can as the gf one less that half the size of the one upstairs.

Well time to go

Mustn't leave it so long next time, but with the hot weather and all the extra packing, It's difficult finding the time at the moment

2005-08-06T21:20:00.000+01:00

where has the time gone!!!

We've had an offer on the london flat, just got to get gom to do all the paper work now :(

The buyer wants to move in asap but gom won't PULL HIS FINGER OUT.

I asked him ages ago to cancel the phone account,as there's no equipment up there but did he?.........

He needs to get the last bills out for water, phone, electricity and rates to send to our solicitor but has he?.........

Our solicitor sent us the papers over a week ago but he he won't get going on it.

We got over the asking rpice so the omens are good for us being able to get soemthing good at this end, but AAGGHH he's driving me mad with his lack of activity.

A freind is taking me up to the flat on sunday to clear everything out - which means leaving gom on his own for about 4 hours but I'm not placing any bets that he'll get anything done

2005-07-16T21:40:00.000+01:00

WOW another week gone and I didn't get into to post.... again.

On Monday I had a train trip up to the London Flat, only one of the agents turned up, but I can't spare anymore time, so we're going with these. Got curtains up, bed made, and a little vacuming and floor cleaning done.

Tuesday was our sole pool session this week- trainer on course on Thursday. Only did half an hour today. On previous sessions the fatigue has cut in even before we got home, so it's obviously too much. GOM was reasonably ok when we got home - managed most of the stairs but I had to meet him at the top to get him the last little bit in the 'glide about' chair /commode. Phoned Community Care this morning to try and get a commode that we can keep in the bedroom. The 'glide about' has been ok so far but now I have to keep moving it out of the bedroom for daytime use so it's a bit inconvenient.

David has started to double the dose of his medication. He's been on one a day, just taking am, but there has always been the option for doubling up, but he's not been too keen.... 'til now. It'll be a few days before we know if it's having any effect.

Heard from our london decorator that he can't remove the rubbish that we've left in the yard at the london flat because his van's broken down. :(

Wednesday contacted the agents about the rubish, but they say they want to continue so will post them the keys. Phone GOM's doctors - if he sticks with this double dose he's going to need a new prescription sooner than normal. Appointment next Tuesday. It's an afternoon one but if the tablets start working we may be ok, if not....... well cross that bridge etc.

Thursday, no pool session but a few errands to do. Post keys to agents and OH YES IT'S MY BIRTHDAY :().

Then we had a phone call to say that the commode is ready to be delivered so we had to be back by 12 noon. Bought David a shirt at debenhams.

Friday usual Waitrose shopping trip, nothing un toward happened.

And here we are back at Saturday again. GOM's therapist help me get some furniture down to the car. Then I can either leave it in the garage or take it when I go to the storage unit on Monday with the other stuff. It means I've managed to clear the lounge out a bit - I've been able to move one of the units into another room (study), so that we have a bit more room to keep the 'glide about' in one place during the day.

Chinese Street festival tomorrow which may be interesting

2005-07-09T20:42:00.000+01:00

Can't believe where the last week has gone. I had a meeting on Monday, that meant that I didn't get up to the london flat to sort it out.

Tuesday we were getting ready for the usual gym session when they phoned to say the lift was out..... yet AGAIN.

At least that meant that GOM was able to get on with the Accounts. But had to make a trip down to the office to pick up some copies of missing papers.

At my meeting on Monday I met the Chair of one of voluntary Groups (the one that NEEDS the accounts completed) and she arranged to come round on Wednesday to 'chase up' GOM.

This meant that we were later than normal getting out on Wednesday, but we still managed to get back 'before the coach turned back into the pumpkin'

By thursday the lift was fixed so we had our normal pool session. I'd tried to book a doctors appointment for myself as I've had some strange discomfort around my waist under my ribs, but couldn't get one. Arranged for the doctor on triage on Friday to call me back (not convenient for me on the day as we've got the gym session) After we'd changed after a fairly longer session, we decided to try out the new concession that had recently opened in the club room. Only then (about 11.30) did we find out about the bombs. So we stayed for some lunch and watched their wide screen tv. Got home about 2pm. Unfortunately the fatigue had already cut in, so GOM had a little 'accident' before he got back (he can't control his bladder if he has to concentrate on 'walking), but we're getting used to this now. However he was completely deflated for the rest of the day and I had to push him around in the chair until bedtime.

Friday everything was more or less back to 'normal' (as normal as it can be). The doctor phoned me about 08.10 but couldn't offer much help over the phone, so he asked me to got down for an examination. Got there about 8.25, saw him about 8.35, but he still couldn't find anything so it's just 'wait and see'. GOM had to stay in bed while I was out - normally I won't go out until he's showered, but he wasn't even properly awake so it was better to leave him where he was. Got back about 8.50. We got out for our shopping just after 10.30 and were back about 12.

GOM's sister phoned to let us know she had got home - she'd had a business meeting in london on Thursday, and although this wasn't affected she couldn't get home afterwards so had to stay with a friend at Putney overnight.

Also found out that my b-i-l had been in Edware Road at the time of the blasts, thankfully away from the incidents, so actually managed to get home - he drove in.

And here we are back at Saturday again. I've got to get up to the london flat on Monday. Last bit of cleaning, make the bed, put up some curtains and the shower curtain and meet with two estate agents for valuations - should be interesting

2005-07-01T21:08:00.000+01:00

Weather been quite cool again, so not too many problems for GOM, did our shop this morning, which left him free this afternoon to do some work on one of the THREE sets of accounts that he's SUPPOSED to be working on. Did he ? Did he ever AAGGHH. Instead he did one of the other two sets that have got a later deadline. I GIVE UP......

2005-06-30T21:50:00.000+01:00

Regretably wrote a letter today to GOM's neurologist in London asking to cancel his next appointment on 18th July and for a referal to a neurologist at our local hospital.

The National Hospital of Neurology and Nervous diseases (NHNN) is the recognised 'centre of excellence' for MS and other neurological problems. It was very convenient to go there when GOM was working, however the last 4 years since he retired in 2000 have been increasingly difficult. At first we could still get public transport (train and bus), but the timing of our appointments always meant we got caught in the london 'rush hour'. Then we asked for the appointments to be switched from winter to summer months so that the neurologist could see how the heat was affecting him, but this resulted in having to get a taxi last year for an emergency visit. We didn't get much change out of £100. We were able to arrange hospital transport for the next visit, but this is very hit and miss and with 12 months between appointments it wasn't possible to arrange this time.

Then with the recent developments with the fatigue we took the decision that even if we could arrange a car, it was going to be difficult for GOM to get out, so we wrote the letter. Post it tomorrow.

We've had a recommendation of a neurologist from one of our local MS group, but don't know if we'll be able to get him or not. He's not based at the nearest fo the hospitals in our local group, but it will still be a lot cheaper than going to london. An d we already have connections with the local hospital MS rehab team, so it should tie up quite nicely

2005-06-28T17:36:00.000+01:00

This time last year....... ah well. Second 'consecutive' hydrotherapy session today. Fatigue has cut in a bit quicker today though. GOM needed help from the top of the stairs and into the flat then had to 'retire to bed' during the afternoon. Hopefully should all be well tomorrow and we're trying another pool session on Thurday. We're still at the 'suck it and see' stage, we don't know what's going to be too much and what's goint to be enough to help him. We're trying to find a balance between the 'cooling' effect of being in the water with the extra exercise that's being done walking up and down the pool. We used to only do it once a fortnight, but now we're trying for twice a week!!!

2005-06-26T21:14:00.000+01:00

Grumpy's mobility still pretty good, but then again the weather is still quite cool. Didn't need the fans on yesterday and got through the night without either having to 'shed the duvet' or turn on the bedroom fan.

We both got out this morning and sat in the riverside park to drink our tea. Also broke with 'tradition' and picked up some supplies at the supermarket. We would normall shop on monday after noons, but our revised schedule of morning trips only means that it would clash with the visit of our crossroads care attendant.

All being well I'll have another trip up to the flat that we want to sell in London, and get some more cleaning up done. Also I may be able to spend a little more time up there as I won't have to rush back for the shopping trip

2005-06-24T17:54:00.000+01:00

Yesterday's session of hydro therapy may have done some good. We went out this morning to do our shopping and so far grumpy's still able to get around under his own steam. It is a bit cooler as well, so it's difficult to tell which has helped.

His appetite is still affected - we would normally have an indian or chinese on Friday's but he reckons he's OFF 'spicy' food. Alchohol is also off but for different reasons. Staple diet of salads for the forseeable. It's helping that he's able to get out, over last weekend he didn't get out between Friday and Tuesday and he hardly ate, but by going out every morning he is eating whatever I put on his plate for dinner.

Did some reading up last night on the effect that the heat has on somone with ms and have realised that his increased incidences of vertigo may also be down to the fatigue. There are quite a few things available, all with a price attached, that can help keep cool, but the cold 'splash' jsut before bed seems to be helping and also now possibly the sessions that he has in the pool have the double benefit? of getting the important exercise AND getting his core temperature down

2005-06-23T15:02:00.000+01:00

The lift was working at the gym again so grumpy went and has some hydrotherapy - just really walking up and down their pool. It's about 20 metres long and because the water comes up to his chest he's supported and doesn't need to use any conventional walking aids - occasionally the normal 'floats'. It's also a nice cool atmosphere for him at the moment. When he's had this type of therapy in the past, it was once a fortnight, but his current trainer is happy to try every session (twice a week?) if he can manage it. As long as there aren't too many other people in the pool I get a good' splash about' as well.

He did the best bit of 45 minutes this morning that I thought may have been too much, but we'll see what he's like between now and the weekend? The Fatigue can take up to 24hrs to kick in and sometimes it can be vicious!!!

We've got our rearranged shopping trip tomorrow which could be interesting?

2005-06-22T19:14:00.000+01:00

Good start to the day. We had a business meeting to attend at 10am to get some accounts 'examined', managed without the wheelchair one way, but needed it to get back to the car, then the energy failed on the last leg of coming back up the stairs and I had to get the ramp and chair out onto the hallway to get him from the top of the stairs into the flat.

Still better than this time last year !!

2005-06-21T19:22:00.000+01:00

Tuesday is normally one of grumpy's days to visit the gym for sessions with a personal trainer, how as all their facilities are on the first floor and the lift broke last thursday we couldn't go. However I didn't want to waste time when he has some strength so we stuck to our normal (well almost) time and did some errands such as taking some bottles to the bottle banks and paying some cheques into the bank. Was pleasantly surprised with the nice breeze which kept the temperature quite nice in the shade, had a walk (me walking him driving his PowerTrike) down to the riverside park, but there were no seats in the shade that were unoccupied so we came home. He'd had about 45 minutes of 'fresh' air so that wasn't bad for someone who hadn't been out since Friday. He also managed to get back up the stairs quite quickly (for him anyway) which was a good sign.

We've decided that for the duration of this 'heatwave' we will only go out between 10 am and 12pm by which time his energy levels have started to drop significantly

2005-06-20T13:46:00.000+01:00

Monday is our day when we have a Crossroads care attendant come in for an hour. At the moment this just gives me a bit of free time to sort out our garage that has been the home for a load of gubbins since I sold my house 2 years ago and had to de clutter this flat to make room for it all. Not an ideal place, so when we finally had to accept that we would have to move from here, it meant MORE de cluttering. This time we've rented a storage unit and I've been de cluttering the garage as well as this flat for the last 3 months

Grumpy also has a flat in London that we've got to sell but it's been a bit slow getting it ready. The decorator has done his bit, but now it's my turn to clear up and declutter up there too, but as this involves a train journey there and back, I only get about an hour or two to do stuff then I have to come back I really need to spend a couple of days there but can't take Grumpy up there as it's on two levels, also as it's only small he'd be under my feet all the time so I'd be worse off. So need to find somewhere I can dump him while I work, I've asked him to ask his sister as she sometimes works from home, but I'm not holding my breath!!!

He's been really weak again today, he was ok for a couple of hours after he got up, but by 2pm all his energy was gone so I had to do the shopping on my own, may go back to using our on line account and have it delivered from sainsburys.

Next hurdle is to see if I can get him to eat.

Our care attendant made him some lunch which is an improvement, and I've bought some yoghurts/deserts that I'm hoping he will eat, may be I should also try to get some more fruit?

2005-06-19T13:02:00.000+01:00

Awake early as usual although I nearly had a fit when I looked at the clock on my side of the bed which showed 10.50. Then looked over to the radio alarm and found it was only 6.40ish. When the batteries on my clock run down, the hands stick.

There's not usually much I can do till my gom gets up and due to his fatigue he usually sleeps for about 10-11 hours.

Most days I get up between 8 and 8.30 and make us some cold drinks to take back to bed. I also start the coffee brewing.

I may try to get showered if I'm up early enough, but mainly I have my shower after my gom's got up 'cause he wouldn't be able to answer the phone while he's still in bed but once he's up he's usually in a room with a phone extension.

With the hot summer days finally arrived he's becoming a real worry. It makes him physically weaker and this impacts on his psychological state. He has quite a few jobs to do for the voluntary organisations that we work with BUT he can't motivate himself enough to do them and I end up having to 'encourage' him which stresses us both out.

Last year at this time we managed to get away on a cruise, but we won't have that relief this year.

My hayfever's really bad this year. I've had it all my life so I don't know what it's like to go through summer without itchy eyes, but the last couple of years I've not been able to get any relief (except when we went on the cruise)

Our usual weekly routine would be to shop Mondays, Wednesdays and Fridays, then my gom sees a personal trainer at a gym on Tuesdays and Thursdays.. Regular exercise normally helps to maintain what little mobility he has left, but, because it's not available on the nhs we have to pay for private sessions. We also have someone come to the flat for an hour on saturdays.

My Gom doesn't like going out on Saturdays because he doesn't like the crowds, I just pop out to get the weekend papers and browse some of the shops. Then sundays we both go out to get the papers and weather permiting we go for a ride to the local park or somewhere for morning coffee. David has a motorised attachment for his wheelchiar and I have a bicycle.

Today however, it was TOO HOT, so I just walked into town to get the papers. I just have to make sure my gom eats and drinks enough!