BACK TO MY
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
They managed to sit Diane on the edge of the bed and get her to sit
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
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
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
Fiona, Community Occupational Therapy lady phoned
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
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
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
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
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
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
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
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
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
is on holiday! Nevertheless, any advice will be good and we can't do
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
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.
at least they are processing it. We have submitted a financial
of Diane's savings for consideration by Bucks CC. for help with
carers for when Emma returns to work. Merika, a lady from Bucks CC.
to help us with the forms. She has been twice now and we have completed
forms. I have forms still to complete for my own carer help (Where did
put that?) and for a grant towards conversions to the house and garden,
to mention an emergency help form. I need a form to tell me what forms
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
the trackway in 3 hours. I've used it and found I could transfer Diane
my own from the bed to the chair. The mobile hoist needed 2 people and
very hard to use. The tracked hoist needs no effort and will position
very easily and accurately. I can recommend it and Westholme as the
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
show them tomorrow what Emma has been doing and hope that they
eventually take over from her so she can get back to her own life,
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
The ceiling track hoist is so good and easy to use I could do it on my
but it was nice to have the help. By today, Thursday
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
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
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;
Still making progress. I can get Diane around to the conservatory
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
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
collected all free! It shows that if you give
people a chance to be generous they often are. Thanks again Gowrings.
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
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.
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
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.
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
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
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
It was the best meal we've had since our Queen
2 voyage to New York.
BACK TO TOP