22nd October...time flies

I write this for the last time at my dad's lovely little cottage in west Cornwall. It has been a tough slog, but dad has finally found a home that he likes and so will no longer be returning here. My half term began on Friday and since then I have been restoring and emptying this home ready for tenants to move in.

Although I have begun on a sombre tone, I'd like to say that things with dad are much more settled then they have been for a long time. He is happy and, while he is not making massive progress, he is at least comfortable and in pleasant surroundings. He is in a home where he can see and hear the ocean and he is well looked after. He has his big screen tv, his desktop computer and his electric wheelchair as well as 24 hour care and support. He doesn't feel lonely anymore. Having said that, he'd still be more than happy to receive visitors, so if you are going to be in Cornwall, please feel free to drop me an email for his address and pop in for a visit.

As things stand, I will close this chapter of my dad's blog as it is expected by both the doctors, carers and by us, his family, that dad will not make any massive progress, but hopefully he will not get significantly worse either. Of course I will let you know if there is anything significant to report, however since August he has simply moved from hospital to home and become settled. I very much look forward to knowing that he is safe and that I won't need to spend 10+ hours a month travelling down to check on him.

I have been furiously packing and have rediscovered all of my dad's writing notes from the book, along with a vast portion of family history from his mother's side. I have decided that I am going to make Harry's sister Kate part of my history teaching in my school since I share her name - I would like to spend a lesson with my Year 5 (9-10year old) class asking them the question "who was Catherine Lamin?" starting with the sampler which hung in my childhood home and confused a much younger version of myself since it was made by someone with my name, but who was clearly not me. I think it would be a good way to understand women in the Victorian era, although, of course, Catherine was born nearer the end of Victoria's reign. Nevertheless, there are a large selection of artefacts, including photographs of her father, of her and of the rest of the Lamin family. I hope I can help the children in my class to really understand what life was like 120 years ago using my family as an example.

Anyway, thank you again for all of your support over the last two years and hopefully, from here on in, you can all assume that no news is good news :)

Catherine

PS I apologise to about 5 or 6 people who replied to the previous post, I somehow pressed delete instead of post to the comments and can't seem to recover them! Please forgive me, I am very tired!!!!

15th August

Time passes, as it is wont to do and things change, sometimes for the good and sometimes not.

Dad has asked me to post again, because he has not updated you with his progress for a number of months. The main reason for this is that there has been very little progress in his eyes. His speech is still very slow and slurred and, while it is possible to understand him if you are sat with him, trying to talk on the phone is a nightmare of frustration for both parties. His dominant right hand is still incredibly weak and unable to grip and his balance is still very poor. That said, he has been making some progress - his balance has definitely improved, as well as his confidence (he has recently been fairly confident in moving from armchair to electric wheelchair).

Two weeks ago dad was back in hospital, diagnosed with another urine infection. After some initial assessments they sent him back for an MRI scan and, since the infection had left him feeling weak, dad was convinced he was going to be told the tumour was back, however this afternoon the doctors fed back that they couldn't see any sign of it form the scan, although we have to wait 2 weeks until it's been checked properly. The hospital have made the decision, with dad's consent, to keep him in, at least for the next week or so in order to do some physiotherapy to try and get him confident standing and transferring between chairs again - one thing that has really been demonstrated this week is that if dad doesn't feel confident he cannot make any progress and so feeling like the tumour was coming back has set his progress back by weeks. He's back in the small local hospital and they have asked that both a speech therapist and a neurologist come in to assess dad to see if there is anything else that can be done to stabilise him.

He has also been very lucky that one of his friends has been looking at potential new homes for him, since a two floor, three bedroom, former miners cottage is a lovely home, but it's just not wheelchair friendly. Graham and his wife have filled in 18 page forms in order to put dad forward for special homes designed for people in dad's situation and are now waiting to see what the assess dad's need as (the system works not on 'first come, first serve', but rather on highest need, and they are hoping that dad qualifies as high need).

Finally, when dad went back into hospital he had to make the decision to let his cat, Kitty, go - she is now 11 years old and needs a lot of attention and dad just can't give it to her. Also, no matter how many times she was treated, she seemed to constantly get fleas, which was ideal for dad. Kitty has very kindly been re-homed and is enjoying her new abode (I hear rumours of a chaise lounge in a conservatory - perfect for cat napping).

On brighter news, dad has a second grandchild now, Felicity was born on 25th June and both her and her mum are very happy - her elder sister Ellie is enjoying her new role and things are looking good for them.

I have just returned from a wonderful 3 weeks in California and Vegas and during this time I was grateful that my younger brother Pete picked up the slack and helped out a lot down here while he was on his university summer break (and working every hour he could at a local holiday park). He has been a great help and it was reassuring while I was away to know that someone was down here to support dad.

He has also been very lucky that his cleaner, Emma, has been doing more than her fair share of helping, including visiting him in hospital every other day and collecting his washing. I cannot thank her enough - she is truly the kindest person I've ever met!

Well that's it for this visit to Cornwall - it can be very exhausting when you take into account the 6 hour drive each way so 5 days is definitely my limit when I come down alone - hopefully next update I'll be able to give you so more good news.

Catherine

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.