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CARING FOR DIANE

DIARY OF EVENTS

UPDATE 20th. November:
The physios came today. Three of them! We were expecting them as we had a visit from the community physio Louise last week who assessed Diane's needs.
They managed to sit Diane on the edge of the bed and get her to sit straight.
One of the problems for stroke victims is knowing where ones "centre of gravity" is. As Diane's left side is temporarily forgotten by her brain it can't sense where her true centre is to balance her.
These functions we take for granted are all the more remarkable when appreciated. Diane did very well and managed to keep relatively straight.
This gives me hope that we should eventually be able to get her into a wheelchair so she can get around.
We are hoping to hear from the wheelchair service that they may have a special wheelchair more suitable than the one we have. This does not support Diane properly now.
We have been having visits from the district nurse who is very helpful in getting various aids supplied.
The community occupational therapy are sending someone next Tuesday to assess Diane's needs. We are hoping to get help with some equipment but I am not holding my breath over it as the hospital occupational therapy could not come up with anything.

UPDATE 25th. November:

The Community Occupational Therapy lady, Fiona" came yesterday and she was brilliant! She promised to get us a better sling and a hoist and she had lots of good tips about handling and moving and improving comfort for Diane in the chair. Well we wait to see when the equipment will come. It should save us having to pay further hire charges for the hoist and sling.
The 25th. is our Wedding anniversary. Married 25th. November 1961 at St. Michael's Church, Northampton, so this is our 48th. We brought up the children in the Beatles swinging sixties.
We celebrated today with a special dinner. Diane had scallops as a starter and I had a rollmop herring. Then we had lightly smoked scottish salmon with basmati rice. We opened our last bottle of Champagne from "Andre Fils & Fils" which we brought back from Celles a Source near Troys. We met him at the winery there. Fantastic Champagne, somewhat wrong with a rollmop herring but OK in my book. We ended with apple crumble and ice cream, apples from Emma's garden. What could be better?

UPDATE 28th. NOVEMBER
The physio team came again yesterday, led by Louise. They had Diane sitting on the side of the bed again. This time we had a mirror set for Diane to look at so she could orientate herself better and sit upright. She certainly did do it much better this time.
A big problem for Diane has been feeling itchy and we have been using a cosmetic brush to relieve it, but it just seems to make it worse. We have tried creams and spray to no effect, but Louise suggested that we were just aggravating the itching and scratching cycle and showed how we could use a more soothing approach with gentle stroking and it seems to be working. Another star to Louise!
Fiona, Community Occupational Therapy lady phoned to say there would be someone coming next Tuesday to see if we could have a steplift to our second level where the bathroom is. To get up there we shall need to use the wheelchair. We have ordered a wedge shaped cushion for the chair and hope that will improve Diane's comfort.

UPDATE 1st. DECEMBER

I collected the wedge-shaped foam cushion for the chair and it proved a great success. We moved Diane to the chair and she was comfortable for the first time.
Fiona, the occupational therapist arrived and she was very pleased that her suggestion had been a success. Shortly after, the step lift specialist arrived to survey the situation for a lift up the three stairs to the bathroom. He was not optimistic that a lift could be fitted. There were all sorts of problems with the situation mainly concerned with safety regulations. It seemed a familiar story of red tape preventing a solution but he promised to come up with some answers. I have the feeling that this will be another task we will have to assume responsibility for. I shall look for other suppliers. Fiona said the hoist and sling would come Thursday. They had not got the sling we wanted in stock but at least we would get a free one. I had to extend our existing hire contract for a further week. I am conscious that we have had absolutely nothing yet, in terms of equipment, since Diane left hospital 5 weeks ago!

UPDATE 3rd. DECEMBER
Hurrah!! The hoist and 2 slings have arrived as Fiona promised. She makes things happen. This is the first piece of equipment we have been given since Diane left hospital. We are lucky to have Fiona on our case. This will save us around £30 a week hire cost and I'll get my £170 deposit back. Pennies from heaven !
The physiotherapy team are due again tomorrow.
The physio team came as expected and Diane sat on the edge of the bed with their help for half and hour, using the mirror to keep straight. She did better than ever before only needing a minimum of support.

We had a report from Fiona about the need for adapting our house for Diane's needs. there are various alternatives. We are considering what would be best having discounted the idea of moving to a bungalow or more suitable home as this would be too much for us to cope with. It is possible to have a ceiling hoist trackway installed which would be much easier to use for transfers. It is possible that this would be supplied by COT (Community Occupational Therapy) which would be great!
I have been looking at ceiling hoist trackways on the Internet and I realise that they could be the best answer to Diane's mobility around the house. It should be possible to get around to the bathroom and kitchen without major alterations to the house.

UPDATE 9th. DECEMBER
The ceiling hoist track fitter came today, another Fiona organised visit.
He proved somewhat less informative than I had hoped. he was only interested in discussing a simple ceiling mounted hoist to transfer Diane to the chair/wheelchair. To be fair, that was what he was asked for but I rather hoped he would have some ideas of how to get Diane to the bathroom. I checked on his company, Domestic Lift Services which is based in Wycombe and saw they use Freeway hoists, so I contacted them. Freeway hoists told me that Domestic Lift Services should be able to supply their range of hoists so I will contact them after I have seen Fiona to see if there are further possibilities.

UPDATE 15th. DECEMBER
Had a very good day today. Fiona came with Derek, a sling expert from "Care and Independence Systems Ltd." He certainly knew his business. He measured Diane and selected a suitable size sling that had a comfortable inner toweling side so that it can be kept on whilst in the chair. The difficulty with the other slings is that they are uncomfortable to sit on. With his help we transferred Diane to the chair and she was comfortable for the first time. It was a great success.
I talked to Fiona about the positioning of the overhead ceiling hoist installation and she explained how it had to be directly positioned over Diane in the bed, which fixes the bed position. Derek had some good experience to add. I also quizzed Fiona about how we could eventually get Diane to the bathroom and she came up with possibly the best solution. That is to have a small extension to the living room with bathing and toilet facilities at the front of the house. Fiona has a solution for everything it seems. She should be Prime Minister!

UPDATE 28th. DECEMBER    
Well, Christmas is over and we have survived!
Everything has been suspended due to the snow and the holiday. We were snowed in until Christmas day when there was a thaw and Emma was able to come with the family and enjoy a Christmas dinner all together. Sarah and Jared came Boxing Day and I went to see the football at Northampton "Cobblers" with him which we enjoyed very much.
Before Christmas Wycombe was completely snowed in worse than in living memory. Richard, Sue and Betsy had to abandon their car after the Pantomime at the Wycombe Swan, and walk home. So did Oliver, 3 miles to Hazlemere, but the worst one in the family was Sophie who abandoned her car at Amersham and had to walk 8 miles home!
Diane has continued much the same and we are looking forward to getting the ceiling hoist installed when things get back to some normality after the holiday.

UPDATE 8TH. JANUARY
This first update of the New Year is just about coping with the latest snowfall and freezing weather. I measured 7 inches on top of our car.
Nothing significant can happen until the access our hill is established.
No-one can get through to us at the moment except Emma who managed to get here by Jerel bringing her to the top of the hill in their front wheel drive Citroen they bought Oliver for Christmas, then walking down to us. Their Mercedes rear wheel drive is difficult to control in the snow and he can't get the chains on it. Oh for a 4x4!
The outlook is completely frozen with temperatures down to -8C. It brings back memories of 1963 when we were stranded until March! Sarah was born then and I remember Diane fell over several times in the snow. But we survived then so I guess we will now.
Emma is heroic to have got to us to help. I don't know what I'd do without her.

UPDATE 15TH. JANUARY
The latest snowfall is disappearing rapidly thank goodness and the hill is passable again.
This gave us the opportunity of a visit yesterday from Gill Aitkens of the "Carers Bucks" Charity.  I can't adequately express the positive effect she had on me. I have been worried the task of caring for Diane will become too much for me even with Emma's daily help and Sarah too at weekends. Gill completely understood this and explained all the ways we could cope in the future and the care assistance we could apply for from social services and contacted them for us. Also she explained the benefits we could apply for and contacted the pensions service to arrange a visit to explain the benefits we could get. I suddenly feel optimistic again. She said so much more I will have to explain things here as I follow them up. What I can say is how grateful I am to her and the Carers Bucks Charity for the time she gave us.

UPDATE 31st. JANUARY
I have been so busy that I haven't done this update as soon as I would have liked, so I'll just list what has been happening;
1. Diane is making a little progress, getting some small movement in her "dead" leg, so that's encouraging.
2. We've had a visit from the Pensions Service lady, Jane, who told us we should be eligible for the "Attendance Allowance" in addition to Diane's "Help with getting around" disability allowance.
I was worried that we might lose the "Motorbility" allowance that would be exchangeable for a adapted car that we hope to get, but Jane said she thought that was included and will let me know for certain next week.
3. We've had a visit from the Wheelchair Service lady, Linda, who is going to ask if we can get help with  a better wheelchair to get Diane around. That will apparently take at least 2 weeks as her superior is on holiday! Nevertheless, any advice will be good and we can't do much till the weather improves.
4. Richard and Jerel have helped cut back our front hedgerow so there is more parking for all the visitors we have. It is the first stage in redesigning the front to provide parking on a tiled area. That will be a major job which will have to be done in the better weather. I am quite looking forward to doing an "Alan Titmarsh" design job on it!

UPDATE 18th FEBRUARY
Time marches on and more forms have been filled in but progress on all fronts is slow. I have just been informed by the Benefits Agency that the claim for attendance allowance will take 11 weeks to process. Well at least they are processing it. We have submitted a financial statement of Diane's savings for consideration by Bucks CC. for help with arranging carers for when Emma returns to work. Merika, a lady from Bucks CC. came to help us with the forms. She has been twice now and we have completed 2 forms. I have forms still to complete for my own carer help (Where did I put that?) and for a grant towards conversions to the house and garden, not to mention an emergency help form. I need a form to tell me what forms I need- or do I?
Anyway, the ceiling hoist fitters phoned today and the installation is scheduled for March 1st.
I am now in the process of getting quotations from paving contractors to landscape and block pave the front area so we ca get an adapted vehicle close to the house.
Now, I must get back to form filling.

UPDATE 1st. March 2010
The form filling has paid off ! Two major advances to report. (1), The ceiling trackway hoist was fitted today and (2), the Bucks social services arranged for a visit from Carewatch to provide us with carers from tomorrow!
(1). The ceiling trackway hoist will be a great advantage to us over using the mobile hoist. Two fitters came from Westholme a company which provides moving and handling equipment. They did a superb job and fitted the trackway in 3 hours. I've used it and found I could transfer Diane on my own from the bed to the chair. The mobile hoist needed 2 people and was very hard to use. The tracked hoist needs no effort and will position Diane very easily and accurately. I can recommend it and Westholme as the company to fit it.
(2). The Carewatch agency will be sending 2 carers to wash Diane in the morning and one to help return her to bed in the afternoon. We will show them tomorrow what Emma has been doing  and hope that they will eventually take over from her so she can get back to her own life, family and work.
UPDATE 3rd. March 2010
The carers were wonderful. Two ladies came Tuesday morning, Karen and Sarah, with their supervisor Jinny, and they just did everything so well. Emma showed them how we washed Diane and got her into the chair and they just took over. They came back in the afternoon to return her to bed as well. The ceiling track hoist is so good and easy to use I could do it on my own, but it was nice to have the help. By today, Thursday I have realised we have turned a corner. Emma will be able to return to work and I will be able to manage with the carers' help. I told them they were like angels from heaven- the answer to my prayers!
UPDATE 27th. APRIL 2010
So much has happened since my last update I hardly know where to start. Emma has gone back to work so I am on my own with the carers now, and I have no time for updates!
Work started on the front garden to make a hard standing paved area to give access for an adapted vehicle.
The work has progressed OK, despite cutting off the electricity and having to have the emergency services restore it !!! and I hope it will be completed this week. We have a wheelchair which Diane can sit up well in so I can look for a suitable adapted vehicle for it. But our first objective is to get Diane out of the front door into the front garden, then around to the back garden when we get the ramps fitted.
We are in a battle for independence and every little victory on the way is cause for celebration.
UPDATE 21st. MAY 2010
Several major landmarks have been reached and passed successfully since my last update. Diane and I went out in a car for the first time since she left hospital 7 months ago!
The ramps to get outside are all fitted and the wheelchair has a headrest, so we could arrange a demonstration of a WAV, Wheelchair Adapted Vehicle.
Gowrings of Newbury were the suppliers we chose who could supply a WAV through the "Motability" scheme.
It all went very well. I drove around the nearby country and Diane was fine in the wheelchair in the back. I have ordered a similar WAV and we should get it in July.
Gowrings kindly said they would loan us a car for grandson Oliver's Birthday party on the 6th. June, at no charge.
I have had a powerpack fitted to the wheelchair this week and today I got Diane around the back to our terrace for a cup of tea. The garden is somewhat overgrown but full of flowers. One of our carers said it was like a "Secret garden". I'm happy with that!

UPDATE 7th. JUNE 2010
Another  major landmark has been passed!
Yesterday 6th. June we made it to Oliver's 18th. Birthday party using the loan vehicle from Gowrings. It arrived Saturday 5th. in the morning and I was able to check out the way to get the wheelchair on board. Sunday morning, I got Diane into the wheelchair, Emma did her make-up and I got her into the WAV. We drove to Emma's house, only 5 miles away, but one small step for a man, one giant leap for us! I'll continue this with pictures later!
Here is the WAV car and us at the Party with Emma and Oliver;
 

UPDATE  3rd July 2010
Still making progress. I can get Diane around to the conservatory at the back of our house for lunch now all the wheelchair ramps are in place. The next step is to get out to lunch in the WAV car- when we get it. It is due on the 2nd. of August and we have a family party arranged at daughter Emma's house on the following weekend.
Diane has actually made some progress now she is having a regular massage from one of our carers, Sarah. It has done more to help with moving her paralysed side than anything so we are booking in more sessions!

UPDATE  1st August 2010
Gowrings have come up trumps again! We wanted the WAV car for another family party Emma is doing. Our other daughter Sarah missed Oliver's birthday as she had to have an operation. She is fine now and we wanted to get together with her and the others and this was our last chance this summer. Unfortunately delivery of the car has been delayed but when we told Gowrings they offered us the demo car again for the weekend, delivered and collected all free! It shows that if you give people a chance to be generous they often are. Thanks again Gowrings.

22nd. August 2010
Our WAV car is due to be delivered tomorrow! Another landmark for us. I'll be posting an update if it happens. Meanwhile, Diane is making some progress with getting movement back in her right side. This seems to be linked with the massage she is having from Sarah, one of our carers, we call her "Carer Sarah" to distinguish from our daughter Sarah. She gives Diane  massage twice a week and Diane's leg has straightened and she can lift it up and down. The physiotherapy did not achieve as much.
The other news is that there are big changes coming in the provision of care in the community. We have received a letter from Bucks social services to say that they will be changing the care agency we are using having placed the contract with other agencies. I sent an email to them saying we wanted to keep our carers, but got no reply, so I sent it as a letter. They then telephoned to say " Don't worry, nothing will happen for several months". However, this is very unsettling, but I was expecting it due to the savings our government want to make. I understand that this is a process which will end in us having to manage our our own caring with a grant from the social services. If we get what we have now I'll not complain but I'm sure it will be less. I suppose we must be grateful for whatever help we have and we are, but it would be nice to think that it was secure.

1st. September 2010
The WAV came on time and we have been out in it for lunch with daughter Sarah to help. All went very well with just minor mishaps.
Here is a picture of the car;
  We are planning to go out tomorrow for the first time on our own. I'll let you know how it goes!
  2nd. Sept. It went well! We went to our favourite local store John Lewis High Wycombe.
  They have good parking space and a very nice restaurant. and we managed to get in there and have an excellent lunch.
  Following that, today, Saturday 4th. Sept. we went to our daughter Emma's to lunch.
  We have achieved our main aim to get mobile and I can now reflect on what we have achieved since Diane had the stroke, which I am writing about here.
 





UPDATE  23rd. September 2010
We have been out lots of time now in the WAV and had lunches out. It is freedom after a year in confinement! Yesterday we did our first food shop together since Diane had the stroke, at Sainsbury's High Wycombe store The store is very big with a covered car park which has large disabled spaces, so we could get in and around with no problem. It was so good to have Diane with me shopping again.
Next week will be another significant landmark, Diane's birthday and we have booked a table for lunch at the famous Complete Angler Hotel at Marlow by the river Thames. We called there Monday to check if we could get in and it is OK. The Head Waiter said they would put a ramp for the wheelchair into the restaurant. So, we shall see!

UPDATE  6th. October 2010
We made it to the Complete Angler and the lunch was superb. It poured with rain but that added to the achievement! They looked after us and gave Diane a special birthday sparkler on a plate and sang Happy Birthday.
It was the best meal we've had since our Queen Mary 2 voyage to New York.
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