Wednesday 31 December 2014

31.12.14

Still waiting for care package - I was phoned by a social worker yesterday who asked if we would accept the "get out of bed" call at 10 - 11 am and I refused because they would probably not come until 11 and Ron would not and could not stay in bed until that time.  Ron is to be on 4 times a day visits so what time would they coming for the rest of the visits bearing in mind that the very last "put you to bed" visit would be 7-8 pm even if we are lucky enough to get that time..  Andrea is now on the case but as of today there is no care available for an earlier time.  I just hope and pray that I will be able to manage together with Ron's strong right arm so that we do not have to be reliant on any carers but I have to practice so we must have them to begin with.

Andrea and Vince helped me move lots of stuff today to I just have frozen food to do and then when I finally move fresh food and all the things on my list make up, hair dryer etc.

Other people are going to be going home out of the ward today so it is going to be difficult for Ron.

Monday 29 December 2014

29th !!

29.12.14

Yes the 29th has been and gone and of  course, Ron is still in the hospital.  It is so difficult to stay positive.   I am so proud of he way Ron is dealing with the delays.  Lots of visitors the past two days which takes the sting out of the situation a bit.   Ron is still able to move his left leg when it is in the correct position and we have recently discovered that he can resist with his left arm when it is being manipulated for him (to keep the joints moving).  So that is all positive.  Hopefully I will hear from the social worker tomorrow when they return to work unless of course he is away until after the new year!

Saturday 27 December 2014

27.12.14

Well that all went in a blink of an eye.  It was lovely to have Ron home for just those few hours, I wish it could have been longer but he was pretty tired out by the time we got back to the hospital on both days despite him sleeping for some hours on 25th.   No chance to sleep on boxing day as it was pretty full on from the start.  How lovely it was to see all the family enjoying the lovely food they had produced (I did not do a thing - what a treat) and then to watch them playing mad games.  Just an old fashioned family day.  Thanks so much to Erica and Graham for hosting the holiday festivities. Thanks also to the  benefactors who arranged and funded the taxis without which we could not have got Ron home.

And now back to everyday life and the uncertainties of discharge dates.....

More soon

Thursday 25 December 2014

25.12.14

Yes Christmas Day is here at last and here I am 9.30 all washed and dressed, fire cleaned out, bedroom hoovered and now all I have to do is paint my nails and put on my dress but I am too early!!

Had a short night last night I went to bed at 10.30 because I was dropping off in the chair but then awake at 4.40 tried to settle down but gave up at 5.30.  I never have any trouble sleeping but it seems the gremlins have got me,

Distressing day yesterday as I eventually had a call from the social worker who clarified that we do not get any financial help with the care package as Ron has more than £30,000 in savings so the initial package (2 people 4 times a day) they are suggesting is going to cost us around £364.00 per week.  Gulp! but he told me that he was planning for Ron to come home on 29th so that was good news.  I told Ron what had happened when I got to the hospital and he said that was a long time away but I comforted him with the thought that it was only two days in hospital after the holiday and then he would be home the next day.   When I returned home after afternoon visiting there was a message on the answerphone to ring the social worker and of course he had left when I phoned.  I can guess what he was going to say!!!!  When I went back to the hospital in the evening I went to the desk and asked if they knew anything and the staff nurse I spoke to said she thought it highly unlikely that he would be leaving until sometime in 2015 and that they had not booked any transport.  I tell myself again and again not to take any dates as correct until there is confirmation but it seems I don't listen to my wise advice.

I am looking forward to spending Christmas Day with Ron's Family at Graham and Erica's, especially as Ron will be with us I really miss him.  My neighbours' cars are all missing so I guess they are away and I had such a lonely feeling this morning when I emptied the ashes.  I am reminding myself that there are such a lot of people who are lonely every day and I am so lucky that Ron will be home soon and I have a super family and lots of friends.

Ron has been to the gym every day this week so that is the upside of being in hospital - he just seems to practice sitting and standing and transferring but it certainly tires him out.

I will write again soon.

Monday 22 December 2014

Christmas Musings

23.12.14

Well the 22nd has come and gone and Ron has finally accepted that his going home is not going to happen on that date.  I will write to the hospital later and suggest they keep these projected dates to themselves although funnily enough if it was not for the Christmas Holidays, Ron could probably have come home yesterday.

The equipment that they have estimated we need has been delivered to Graham's. so that part worked and we now await the care package.  The hospital are arranging Ron's meds, he had to try and open his tablets yesterday as they may need to change his packaging.

We are very lucky that we are able to go to Graham's for Christmas Lunch and also that Graham and
Erica are to host the traditional Boxing Day gathering as this has given Ron something to look forward to as he has "day release" for these.  Poor Erica, I am not sure she quite knew what was to hit her.

I have to plan what I need to take to Churchills but I just don't seem to be able to get my head round it.  I have just realised I will need some packing boxes.

It is a funny feeling to be completely uninolved in all the planning and worrying about Christmas for the first time in my adult life.  I think it has changed the way I will think about it for ever.   I know everyone says that it has become too commercialised but when you look at it from the perimeter, it really has.   All the worry about what to buy for the people who don't need anything plus the arranging for the vast piles of food required for 2 days - my goodness the supermarkets must be rubbing their hands in glee!  Don't get me wrong in any normal year I would be among those working out if I had enough vaieties of cheese on the cheeseboard and I do love the season especially as it involves family gatherings (my favourite occupation)  but I do feel we should step back and re-assess.  Enough of the soapbox.


As you will have assumed by now nothing to report on Ron although he has started to pick up his magazines occasionally so it looks as if his concentration is beginning to return.

Friday 19 December 2014

Taxis sorted

19/12/14

Well Suzanne has found taxis with wheelchair access for Christmas and Boxing Day so that brings a little brighter mood.  

I am still not sure when we will be able to bring Ron home for good as it is all down to equipment and mainly the care package.  I will try not to fix on any particular date - it is too upsetting when it does not happen.   Ron is so brave and although he was obviously devastated not to be home by Christmas, he bore up to it very well.   I can imagine it must be a logistical nightmare getting the carers sorted out especially as we need two carers four times a day.   We have not yet met with the social worker so I don't know yet how much this is going to cost us - quite a bit I imagine.

Taxis are arranged for 11.30 to 5 one day and 12.30 to 5 the second day.  I think this will be long enough for Ron as I imagine it will be very tiring for him.

Thursday 18 December 2014

oh no!

After all the excitement it now appears we can't have Ron home for Christmas because they can't get the care package in place in time.  They are talking about 2 people 4 times a day so I can see that there are not spare people just waiting for extra work over the holiday but they should not have raised our hopes.  We are now looking at Monday week but I am not even sure about that.  In addition they insist that if Ron is to come home for a few hours over the holiday  that he has to have a wheelchair transport so I think this is going to prove very difficult over the holiday so all in all dam it!

Wednesday 17 December 2014

17/12/14

Have to do a big PS as I heard this afternoon that Ron is to come home for good by Christmas.  Not sure of the exact date but will learn more tomorrow when I meet the OT at Graham and Erica's home where we plan to stay for a time when Ron comes home while we assess what we need to do to Burton End.  Very exciting news but a little daunting.  More soon.

17.12.14
Thank you to all my friends from the U3A gardening group and bus pass group for these lovely flowers.  I am sorry that my flower arranging does not really do them justice but I will enjoy them.

No news to report on Ron, he is still able to demonstrate his movement in his leg and I think it is getting easier for him the more he does it.  He is in ward 8 now and seems to have accepted the move.  His two fellow patients are due to move out today so we will wait and see who his new neighbours will be.   I hope that they will be able to converse as I think that makes the time go quicker.

Ron had a chat with a physio about his going home date and she told him that they will keep him there as long as they are able to bring about any improvement and he has accepted that this will be to his advantage.  As he is now able to get from sit to stand and back again and they are practicing the lowering down I hope that his next progress will entail a turn as this will make it much easier at home where we will not have a rotastand.

Saturday 13 December 2014

13.12.14
I have some exciting news, this evening Ron was able to lift his stretched out left leg in the air and hold it there.  He was then able to put down and pull it back to a right angle position.  He was able to repeat these movements several times.  This was so exciting and emotional we both had tears in our eyes.   This was the biggest movement we have seen so far and is really encouraging.

Still no news about discharge date but have been given the OK to take Ron out on Christmas and Boxng Day.

Friday 12 December 2014

12/12/14

Nothing to report just more frustration regarding discharge date and information as to whether Ron can come home for a few hours over Christmas.   On Wednesday I spoke to the physio manager about the projected date and she said that she would ask the physios to speak to me the following afternoon during visiting if they were not too busy otherwise I could phone and speak to them and she gave me a direct number - nobody came on Thursday so today I telephoned and was given the usual reply that it is too soon to say when he will be coming home.   The physio told me to speak to the nurses as the doctor had to make the decision about home visits so I phoned the nurse station and I have been given the names of two nurses to speak to today.

Generally Ron is in good spirits, the physios tell him he is doing well in the gym but he is frustrated by his lack of progress.   He does everything that is asked of him including yesterday attending a quiz, men against women (the women won)  Ron and I gave up attending quizzes a few years ago because we can never remember the answers even though we know them but Ron thinks he will get browny points so he does everything.

Fortunately Ron is now eating all his meals so that is one less worry.

Glen and Bradley came to visit yesterday evening.  Ron is very pleased to have so many visitors and boasts that he has more than anyone else.

In answer to queries from friends, I am fine I eat and sleep well and I have mornings to myself, I do feel I am living in a type of limbo and I find the uncertainty very difficult but I have come to the conclusion that I must just give in and go with the flow.

More soon.

Tuesday 9 December 2014

9/12/14

I have not written for a couple of days because there has not been much to report.    Ron is getting stronger and now manages to sit out in a wheelchair all day.  He has not been to the gym since Friday but the OT's have been observing and advising him.  Yesterday for instance he was able to wash his whole body while on the bed, which previously the nurses have been doing.   Ron told me yesterday that he had managed to tap his non-working leg up and down several times and he was going to surprise me when I arrived but unfortunately he could not manage it when I got there but this is an encouraging sign - if you can do it once you can do it again.  Ron now has no trouble using the rotastand to get from bed to chair and chair to loo.

Ron is extremely lucky with the amount of visitors that he has, I think he has more visitors than anyone else.  All the family visit frequently but yesterday afternoon, we had Danny (ex brother-in-law), sister-in-laws Jean and Pat, and then our friends Barbara and Tony came for the last half hour.  Ron really enjoys the visits even though we keep hushing everyone when it gets a bit rowdy.

This morning I phoned the hospital to see if Ron is not out by his projected date of 22nd, whether he will be able to make some home visits over the Christmas Holiday.  The Staff Nurse has said she thinks it highly likely that he will be home for 22nd.  So 13 days to prepare!!   I have had several attempts to speak to someone from the Stroke Association but keep getting directed to the wrong volunteer.   I am now waiting for someone from West Essex to contact me - The Malden area is not for us.   It is possible that there will not be a rep for this area in which case it will be phone call only and I find it difficult to hear some people on the phone and I would really like someone to see what our home is like.

Another good thing is that Ron's fatigue seems to have improved considerably, his anxiety has lessened so all good news today.

Saturday 6 December 2014

06/12/14

Not much to report.   Ron went to the gym yesterday morning, more sitting and standing and he was fast asleep when I arrived - I left him to sleep for an hour during which time a very loud continuous bell was ringing for around 10 minutes, one of his neighbours had lots of visitors as it was his birthday and one of these had a loud booming voice  and she had a lot to say so it was not exactly peaceful.   I woke Ron at 3.30 and told him that I thought he may not sleep in the night if he slept too much during the day to which he replied that you cannot sleep during the night because it is too noisy!

Ron is still not eating very well which is a worry to me I took him in a chocolate desert (lots of calories) yesterday and he managed to eat most of it.  The food is not very appetising as I don't think it is cooked on the premises which is a shame as the previous two hospitals had very nice food, especially Harlow.   I try to encourage Ron to eat saying he needs to get strong to do the physio and he does understand but tells me he does not need nagging.  I will just have to feed him up when he comes home.

I have not spoken to the local coordinator from the Stroke Association but I left a message for her on Friday so I hope to hear on Monday.  I need to get some information about what aids will be provided and what we will need to do ourselves so that I can get some plans in place.

I will write again when there is something to report.

Thursday 4 December 2014

4.12.14
On Tuesday Ron was very emotional and although I do understand that this is one of the effects that the stroke has had on him, I find it extremely difficult to deal with.  Both Ron and I have always been stiff upper lip, get on with it people and I was at a loss with what to do.   So much so that on Wednesday I called the Stroke Association for advice.   I spoke to a very sympathetic person who suggested some strategies.  She also gave me a telephone number for the local coordinator who she told me would probably come and see me and discuss various things.   I tried the number today but I have either written it down incorrectly or she has given up as the number was unobtainable.   I have sent an e-mail asking for clarification.

Yesterday afternoon when I visited Ron, he was asleep so I just sat next to him until Suzanne arrived when I woke him as I knew he would not want to miss her visit and Ron told us that a nurse has told him that he is going home on 22nd December.  This has sent my mind into a whir as no-one has been in touch with me about what alterations and arrangements need to be made to our home and this is only 3 weeks away.  In addition there has not been any significant improvement in Ron's ability in fact I think he is only just getting back to where he was when he left Addenbrookes.  One of the problems is that Ron is suffering with exhaustion, another effect of the stroke.  By the time he goes for his physio he has stood up several times - toilet, chair etc and this has tired him out and as he says he cannot give his all in the gym.  He explained this to the physio's yesterday and they gave him a leaflet on it and he said that he now feels less anxious as he understands that it is normal for people who have had strokes.  This exhaustion can go on for weeks or months and this must mean that he will not be able to benefit from the physio.

It is the mind things I find most difficult - anxiety and heightened emotions - I wonder how long these will last but of course no-one can tell me because no-one knows.

Another thing - I wish all the nurses were as kind as the best of them.

This all sounds as though I am going under with worry but that is not the case I always feel better writing it down and also I know that I will have all the help I need from our family.

Tuesday 2 December 2014

02/12/14

Great News yesterday Suzanne, Ryan, Michelle and I all saw Ron move his foot and then leg and not just a little flicker but very noticeably movements.

Earlier, during afternoon visiting, Ron was very tired having had his assessment by the physio's which according to his telling involved lots of sitting and standing and then standing for some time but whatever, he was quite exhausted so I was pleasantly surprised that by evening he had picked up and was telling us all jokes and then still had the strength to move his leg.

Vince had sneaked in out of visiting hours and fortunately persuaded Ron to have some supper and he cleaned his plate.  We must all encourage Ron to eat and drink.

Monday 1 December 2014

1/12/14

Saturday was another traumatic day.  You will remember how pleased I was that Ron had been moved to Herts & Essex where everything is clean, shiny and state of the art so I was looking forward to visiting him on Saturday but he was not in the ward where I had left him the previous night and a nurse took me to where he was, she explained that they had moved him nearer the nurses station as he had fallen out of his chair while reaching for something and had banged his head. Consequently he was put on 15 min obs.   As soon as I entered his room I could see that he was distressed and he told me that he had fallen and his his head on the leg of the bed.  As I have explained before it is difficult for Ron to maintain his balance and leaning too far to his good side his bad side had pushed him over.  A lesson learnt.  Fortunately Suzanne came to visit that afternoon and was able to diffuse the tension.

When the night shift came on they were unhappy that no doctor had been called and they called the emergency doctor who was said to be arriving between 1 and 9 hours later (There is no doctor resident on this ward as it if for medically fit people only, there is a doctor 9-5 during the week).  Fortunately Ron does not seem to have suffered any lasting effects apart from a bruised head and painful side.  The nurse in charge of the night shift gave Ron a prolonged talking too (too prolonged in my opinion and that of Andrea who was there at the time) which I witnessed and succeeding in thoroughly frightening me when he mentioned the dangers of stroke victims banging their head.  We felt he implied Ron fell on purpose.  Incidentally the doctor arrived 17 hours later and diagnosed Ron with a water infection so more tablets!  I think this was probably caused by prolonged use of the catheter.

I was on pins on Sunday afternoon as I thought Ron may have lost his confidence about sitting out so I was pleased to see him sitting in his chair in his new joggers and he was back to his cheerful self.
At Ron's suggestion I recorded his first wearing for posterity.

I am being very well looked after by my family After evening visiting on Saturday Andrea took me to The Nags Head for dinner which made a nice change from my own cooking and on Sunday I went to Graham and Erica's for a lovely Sunday roast.

Today the physio should be assessing Ron and working out a programme for him,  I am expecting him to be tired out.   More soon.