26th March.....Changes

After my last positive post a lot of things have changed. Firstly, after Christmas, my dad had to ask Maureen to leave as she had spent about 2 out of 5 weeks at home and, while we all appreciated that she wanted to spend Christmas with her family, she hadn't arranged any alternative support for dad so he was mostly alone for 3 weeks over the Christmas period and he began to feel that she wasn't 'earning her keep'. While she seemed like a lovely person, I agree that she didn't seem to understand that the free room, board, food and petrol came with some responsibilities. Unfortunately Maureen's departure coincided with Sarah deciding that enough was enough and she needed to take a step back. This meant that Maureen departing left dad completely alone, but fortunately this meant that Social Services FINALLY got involved!

Despite her insistence that she was done, I have to say Sarah has still been a massive help, particularly in what unfolded next.....

On my visit to Cornwall at the end of January, dad and I discussed the possibility of him going into a care home for a month of respite care and we visited a luxury nursing home an hour from where he lived. While we were there they discussed him having physio every day with their in house therapist and hydrotherapy in the pool. Dad and I were both sold on the idea and we arranged him to head over on 1st March. Unfortunately things were not quite as rosey as we were expecting and it turned out that the physio was only 4 days a week, use of the pool would require hiring men to help him into the pool and dad felt that the care level was significantly lower then what he was receiving at home, which was only 4 times a day. For £915 per week, plus extra for physio, dad was not happy and he demanded that he come home. This would have been easier were it not for the fact that I was 300 miles away and undergoing a school inspection and so barely had time to sleep, let alone deal with dad. Fortunately between Sarah and a couple of his friends, they were able to arrange him coming home after 10 days, but that has meant that he is only getting 3 care visits a day as the carers had rescheduled things assuming dad would be away for a month. On the bright side of this, dad has now begun to get himself ready for bed, and I think an element of forced independence has been good for him. I'm heading down again on Friday and will have to sort out his cat and lots of other bits and bobs that were meant to be sorted on his return home, but I hope to be able to report an increased level of independence as dad is adamant he is walking better.

On a brighter note, I have just started booking a 3 week holiday in California for my 30th so I hope I will get the opportunity to meet some of you while I am out there!!!

Thank you again for all of your support

Catherine

18th January - They tried to make me go to rehab....

Just a little update to warm the winter months.....at the end of October my niece, Bill's granddaughter, turned 3. To mark the occasion a small party was held, however Ellie's birthday also marked the moving of Lucy & her husband to Lincoln meaning that all of Bill's 3 children have now left Cornwall.

This has been a hard adjustment for us all, leaving dad helpless & far away. Luckily, help was found in the form of Maureen, who had caring experience and was looking to move to Cornwall to be nearer her grandchildren. She has now moved into Pete's former room and, while she hasn't taken on the caring burden, she has made herself available to take Bill to appointments, cook a few meals now & then and just be there in case of any emergencies or accidents.

In early November I was lucky enough to attend a visit with Bill's neurological physiotherapist. Although it'd previously been suggested that there wasn't much that could be done, I was surprised to be told enthusiastically about the progress dad was making. It seems that on his initial visits, lying on a side and rolling to his back was a near impossible task and now he could do that with ease. He had also managed to learn to stand unaided and was working on simple training requiring him to stand up, pick up a rubber ring from a vertical post and transfer it to a horizontal post. The therapist explained that he had been unable to do any of these things when he first started in August & that he was making huge, if slow, progress. The next steps were to be able to stand unaided and twist to the left or right without losing balance.

I'd like to say here and now that Becky at Helston Physiotherapy Practice deserves a huge amount of thanks for her patience and hard work - it seems she really is a miracle worker.

Bill has been using an ancient exercise bike to pedal at home (he sits in his armchair and extends his feet), as this will help with co ordination and muscle mass- we bought him a small version with just pedals, but he found it unhelpful since it had a much smaller turning circle and tended to slip away from his feet.

I was due to head down to Cornwall today for my first visit of the new year, however due to snowy conditions in London and along the whole route home, I've been told to stay in London and go down next weekend instead (needless to say, I'm curled up with a nice glass of red wine as we speak). I hope to be able to update again after that, but dad certainly feels more confident and, in fact, he has been trying to start using his laptop again and was able to read some of the lovely comments you have all been leaving - he was really happy and grateful for all the support. Hopefully, before too long, we can get him sending short emails and surfing the net so his day isn't filled with awful cookery shows and daytime tv.

I hope everyone had a wonderful Christmas & New Year.

Catherine

15th September - the aftermath

During August dad began physiotherapy, we have since been told that he has ataxia, which is a neurological issue that can be caused by a trauma or can just occur in some people. We believe this has been caused by the bleeding which happened when he was biopsied. It has been suggested that if he had received physiotherapy within three months of receiving this injury he may have made some progress towards recovery, but since over a year has passed it is unlikely that he will 'get better' and the best we can hope is that he will learn how to cope with his disabilities. Not long after his biopsy he became seriously ill so may not have managed to undertake an physio, but it is still disappointing that his problems now not only stem from the treatment he received, but that he may not have been so seriously ill had they then done something to counter the issue they caused.

It has become clear to me that disability caused by a biopsy undertaken in the brain seems to be a serious and relatively common side affect and although my dad signed a disclaimer, which mentioned this, I'm not sure he felt like there was any real chance of it happening.

So where do we stand? Dad has been very fortunate that the physiotherapist he saw at the little local hospital arranged for him to have daily physio for 6 weeks at home, but if I'm honest, he doesn't seem to have made any significant progress, although he is a little more stable. We must face the reality that dad will never be independent again since a trip to the bathroom needs someone to accompany him in case he falls. This is a terrifying prospect as I am 300 miles away, Pete has just moved to Bristol so is 200 miles away and to make matters worse Lucy's husband has been posted to Lincoln which is 350 miles away so all 3 of dad's children are now too far away to be any real support. He is looking to get a companion to live in to help out and, while he is grateful to have survived an illness that should have killed him, the future is not nearly so positive as we had all hoped.

Once again both dad and I would like to thank you all for your positive comments and kindness throughout his illness and subsequent recovery.

28th June - Good News At Last

Dad saw his consultant today and was told some excellent news.....according to the specialist, dad's tumour has not shrunk....it's gone altogether!

This means that his weakness and lack of balance, as well as other symptoms are all due to damage from the steriods and biopsy and therefore will get better with lots of physio. More importantly, without the tumour he won't get any worse so from here on up, the only way is up!

I'm so happy right now, if a little emotional so forgive me for the short message!

x

24th June - Post Radiotherapy

I haven't posted for a while for the simple reason I didn't know what to say - dad has been in the local community hospital for about a month and we were all feeling incredibly pessimistic about the future. He has been slowly declining in terms of his general health and so when he was sent to Treliske for his last set of scans we were all prepared for the worst.

Somehow, however, we have had good news back and have been told that the radiotherapy has led the the tumour shrinking - this has surprised and amazed us all and we are now working towards dad coming home from hospital, albeit with a lot of care in place. The good news seems to have given him the kick up the backside he needed and he has begun to speak more clearly and become more enthusiastic about trying out physiotherapy in order to become more independent - this is particularly important now that Pete is off to uni in September and it is highly likely that we will need to find some sort of live in care for him, unless there are significant improvements in the next two months.

Nevertheless it is great to have some good news and we are all smiling and optimistic!

Anyway, thank you, as always, for all of your love and support

Catherine

PS http://hisnhersfood.blogspot.co.uk/