Christmas is coming........

Dad had now been in the hospice for about 8 weeks , its was becoming apparent that his pain wasn't really manageable and to be honest the hospice were not really able to offer Dad anything else. They really had exhausted every available medication.The hospice discussed Dad returning home in mid december with weekly visits to their day hospital which was something Dad seemed very keen on - me not so much! I knew that Dad wouldn't cope at home, I had seen his deteriation both mentally and physically  , a day can be a long time when you are in the type of pain he was in. I made a decision then based on my experiences with my Mum before she entered care , I asked for social services help , I said that I had serious concerns for Dad's welfare when he returned home and I said that without some care input I didn't feel he would be safe , and I wasn't prepared for his to be in a situation that may lead to him having an accident or suffering. In the years before Mum went into care she had several accidents , she broke her wrist , she suffered a full thickness scalp laceration requiring 30 stitches and then had a major aspiration event requiring surgery and and ICU stay. I had seen enough accidents and I would not allow my Dad to be in a vulnerable position. Many people find making that decision difficult but I had to put his safety above everything else I was feeling. I was responsible for his care and despite his feelings about his abilities I stood firm and insisted that without care in place he wasn't leaving the hospice. This is something that people don't realise, if you think a loved one is being discharged from hospital and you don't feel it is in their best interests or you feel they require some care at home you must raise this issue in quite categorical terms. You need to be able to give solid reasons for this but if you think the reasons are there you must act in their best interests to ensure their safety.
The hospice contacted social services and a meeting was arranged for December the 23rd. This seemed fine to me because I felt sure a care package couldn't be put in place before the Christmas break and I was happy it bought us enough time to get the correct care in place. Dad came to the meeting and I put across my reasons for his care requirements and to my surprise Dad was on board with this he accepted that he may need help and having it in place was a benefit for him. The social worker went away keen to facilitate Dad's requirements and I felt slightly reassured that when he came home he wouldn't be too vulnerable and people would be around to assess his needs each day.
I had discussed Christmas with my Dad and he was going to come and stay with us until Boxing day, we would try and get him to visit Mum and we would try and make the best of what I knew would be our last Christmas together. I am filling up as I write this because I knew I didn't want to let Dad go and I knew that it was getting closer and closer and I just really wanted to turn back the clock.
Christmas was not the fun time of year that we all imagine as Dad was really struggling with his pain and despite the concoction of drugs I was feeding him nothing was really touching his pain , I hated to see him like that and I know he hated to be like that. We visited Mum Christmas day and Boxing Day but Dad even struggled with this as his pain made sitting and walking so difficult . He spent the majority of each day laid on the sofa in the lounge , covered in duvets unable to get warm , the rest of us boiling hot as the heating was on full. We all made the best of it for Rebecca as I didn't want her to remember her last Christmas with her Grandad as an sad time. To say Rebecca is wise beyond her years in some things ,many who know her would say is an understatement, she took everything that was happening in her stride , she knew her Grandad was fading away but she never let us or him  see her upset and she realised that life is a very precious thing, her love and affection with my Mum astounds me , many children her age would find it so difficult , but she just says its her Nanna and she loves her so will do anything she can for her. Mum and Rebecca were so close before her illness - like two peas in a pod , but Rebecca can't remember this which is so sad her only memories are of Nanna having Dementia.
I was relieved to take Dad back to the hospice on Boxing day evening as we had some friends coming over , this sounds awful but I just wanted to pretend that part of my life didn't exist for a couple of hours. I was still hoping the hospice would provide a miracle pain cure but I knew it wasn't going to be the case.
I knew that the new year would bring new challenges for us and the first one we had to deal with was getting Dad home and ensuring his care was suitable to allow him to live safely. I wasn't in the mood for New Year celebrations so the three of us booked a hotel at the coast and just took ourselves away to enjoy some time alone away from the pressures.

what is the meaning of this ?

I have given the blog a lot of thought in the last year or so and have considered writting it on many occasions , the main reason is to show people that you can achieve things if you have the desire and the persistence. 

Before my Mum was diagnosed with dementia I was clueless about the adult social care system and the facilities available as I am sure most people are , the Alzheimers society were an excellent first resource and started me on a journey of discovery. They made me aware of who I should be involving in adult social care , what help my Mum could obtain and also how to try and maintain Mum and Dad's dignity and independence. My blog can hopefully be a tool that other careers or family members can access to get help and support when they need it. 

I never realized how persistent people need to be to get the wheels of bureaucracy in motion but I can honestly say that I am certainly persistent now and I never let anything slide related to my Mum's care. So far in my blog I have touched up on the adult social care financial review and its importance , being prepared and having all the necessary documents ready is a must for this , documentary evidence is always required and if you go to these meetings prepared they run much smoother and you can usually avoid any delays in the process. Ask questions ! If you don't understand what is being discussed or agreed ask until you do, you will be required to sign forms and these are legally binding so ensure you are aware of everything you are agreeing to. I wasn't aware that once someone goes into care they are considered single and can claim lots of things in this capacity that they can't claim while at home. If you have attendance allowance and go into care on a self funded basis you keep your attendance allowance. If you don;t get a full pension you can claim some pension credit depending on your finances , again this isn't the case if you live at home with someone getting a full pension. 

Take down contact details for everyone you speak to, this makes it so much easier to follow up on things and chase up things if they don't seem to be happening. 

I future blogs I am going to discuss lasting power of attorney ,palliative care registration and DNR,  DOLS ,continuing care funding and also fast track funding all of which I have had to be involved in. Many of these areas have been difficult to deal with but hopefully my experience can help others to navigate through them . 

My family have been through a horrible ordeal over the last 5 years and it has been a huge learning curve for me to get the care package in place that my Mum needs and deserves. I have had to challenge those in authority who hold the power with regard to decision making and I can say that to date I have never failed to obtain my objectives. I have had to take a firm stand with some people but ultimately, what I believed was right and I got the correct outcome. I have had to dig deep to find the strength to fight for what is right and at times it has been such a struggle, but I have never given up because if I don't fight my mum's cormer who will ? The care system is an impersonal machine and a lot of people involved in decision making within it are very good at not personalising claims or discussions - I am sure this is necessary in their role, but I have always had my Mum's needs in sharp focus and have fought hard to ensure they are met. 

I can discuss all aspects of my mum's care now without becoming emotional- we have had so much to deal with and fight for I have learnt to distance myself from the emotions of the illness in order to get the desired outcomes. I hate what has happened to my mum and how she will end her life but I am confident I can look back on it all and know I did all I could to ensure her care was good and that she was't forgotten or neglected. 

What a difference a year makes

Dad was quite settled in the hospice and they were working really hard with his pain meds to try and control his pain. It was a very fine line as too little medication resulted  in no effect and a slight increase resulted in a toxic state which manifested itself in confusion, frustration and anger on occasions. The Sue Ryder staff at the hospice were amazing they gave Dad such good care he was so well looked after. On days when he was well enough I took him to visit Mum. He enjoyed his visits but Mum didn't give much away as to how she felt. Around this time the staff at Mum's care home had started to hoist Mum and get her in the day room and into the communal lunch room. She seemed to be finding this pleasurable and spent time watching Tv , flicking through her magazines and people watching which after months in bed was a new novelty for her. She had a tendency to get annoyed if other residents were shouting or being disruptive but apart from this she was socialising well for someone who was not able to verbalise her needs or feelings. It was lovely to spend time with her when they were playing bingo. She couldn't join in but enjoyed the chatter around her and the distraction that occurring around her. The staff had noticed that mum was eating better while in a group environment and this was very encouraging. Mum could at this point still feed herself - table manners were of no importance and the staff were always on hand to help out if needed but while mum was managing they would allow her as much time as she needed to maintain her independence. I avoided visiting at meal times as I didn't want to be a distraction for mum and I wanted her to maintain her independence in feeding for a long as she possibly could. 
I missed my Mum so much. Although she was there she was no longer able to communicate and I missed her conversation so much. Just being able to tell her things and get a response would have meant the world to me. I was now making all the decisions for Mum and I would have loved her to be able to tell me if I was doing the right thing. I just wanted a minute of Mum back. Birthdays and Christmas are sad for me I miss Mum's cards and best wishes. 
There was no real improvement in Dads pain regime despite the best efforts of all the team involved in his care, there was lots of discussions about some experimental treatments for the pain and if these were going to be of value. Dad was settled in the hospice and was appreciating all they were doing for him. He could be very up and down in his moods and could on occasions be quite short with me if he was struggling with pain control. I knew not to take this personally but often it was hard not to. 
The pressure was on for me, I had become the responsible adult caring for both of my parents and it was a role I was finding hard to adapt to as well as being a wife , mum and working. Dad seemed easily confused with discussions about his care so I was constantly having to question the nurses about what was happening just to keep a handle on things. I had to know what was going on as a could not afford to allow my Dad's care to suffer , This was a throw back to the issues I had to deal with when Mum had been in hospital. Although the situation and care was on a different level that was always at the back of my mind and I could not sit back and let things go. 
We were now heading towards Christmas and I was aware it may be the last Christmas I would have with my Dad and I didn't want it to come round. I have always hated Christmas and I was dreading it more than usual. I always go all out to make Christmas special for Rebecca but I was struggling to put on a brave face with Mum in care and Dad in the hospice. I couldn't really believe how things had changed for us as a family in such a short space of time. Christmas is all about family I felt horribly alone. 

Round 2 .....

Dad's first chemo had gone well and although he was 82 and not robust he had coped well and apart from being tired there had been no major issues. He was prepared for the second chemo and this was given three weeks after the first. He was using his home oxygen daily as advised and wasn't really feeling too bad - all things considered. Along with the chemo Dad had a round of radiotherapy, the purpose of this was to help de bulk the tumour in his vertebrae and hopefully reduce his pain. Pain was a big issue for him and he was truly suffering, I was hoping for some miracle with regard to his pain but it wasn't to be. The radiotherapy had no effect on the pain Dad was feeling. I collected Dad after his second chemo and he had tea with us before heading home to rest , he didn't want to stay with us as he felt he was putting us out - so he said , but I just think he wanted his own space and felt far more comfortable at home. Chemo number two was brutal and Dad really struggled , he became very weak and never really gained his strength back. A couple of days after Dads chemo I was struck down with a tummy bug - this meant I could not see Dad as I was not going to risk him getting any infection that could further weaken him. We spoke on the phone but I was very worried about Dad and could tell he was really struggling. Once my bug had cleared I saw Dad and was really worried about him - he was not tolerating the pain at all and could barely function. I called the palliative care nurse who visited and recommended he be admitted to either hospital or the local Sue Ryder hospice - initially Dad was against this , I think he felt that if he went in hospital he was admitting that he was struggling. I persuaded him that going in to the hospice could help him with pain management and also allow him to rest. He finally relented and was admitted for pain management and general TLC.

His overriding concern was for mum and her welfare , I visited them both as much as I could and every evening and weekend was spent travelling from Mum's care home to Dad's ward. Dad was always asking how mum was - Mum however never even seemed to notice that Dad had stopped visiting. She may well have been totally upset by the whole change in dynamic but there was no way of knowing. This is something I find hard to deal with , the inability to be able to get any insight into Mum's feelings, I constantly worry about how she feels and ultimately its a  question that will never be answered. Around this time Mum started to take an interest in magazines , she didn't read them but would spend hours flicking through them and looking at the pages, my mother in law started saving all her magazines and they were then sent on to mum, I was pleased she was doing something that may stimulate her mind and ease any boredom she was feeling. We would often while away the time flicking through magazines , pictures of babies or animals always seemed to spark and reaction from Mum - any reaction was always lovely to see.
Visiting both Mum and Dad was very difficult and I always felt like I wasn't really spending quality time with either of them , just ticking the box of visiting.  Dad seemed to be unable to remember information now as I think he was just struggling to take everything on board so I found myself becoming responsible for both Mum and Dad and ensuring their needs were met.  When Dad was feeling up to it I would take him to see Mum and he loved visiting her. He just wanted to see she was ok and being looked after.

During this time Mum was assessed by the Continuing care team ( CC)- I wasn't aware what this was and didn't pay much attention to the letter I received stating that Mum didn't qualify for CC funding , to my mind nothing had changed Mum was still contributing to her care.  I would later find out what CC was and how it could be applied to people in care. No one talks about  CC funding but everyone with a loved one who needs care should make a point of reading up on it. CC relies on people not really being aware of it- in my opinion. It can have huge implications for the person in care and their family and I will come back to this in  further blogs. My mums care is now fully funded by CC but this was far from an easy journey and I will discuss this fully when we reach that stage.
While Dad was in the hospice a CT scan was arranged to assess if the chemo had reduced the tumour size, the hospice arranged all this for Dad and also accompanied him to his hospital appointments , this in itself was amazing and reduced the pressure on me and my family hugely. I didn't have to try and juggle work around appointments but I knew Dad was accompanied and well cared for.
The CT scan showed the chemo was not reducing the tumour size and It was agreed that Dad wash't really strong enough to undergo any more treatment , this was huge blow to us all but again Dad didm't really seem to react to this. It was agreed the focus would be on pain management and getting Dad comfortable so he could regain some quality of life.