CHC assessment !

So eventually an assessment was arranged for my mum, there was very little flexibility in when they were prepared to come out so I had to again take some time out of work to make sure I was at the assessment. When I arrived at the assessment I was a bit surprised ( understatement ) to find that the nurse from CHC had already done all her assessment before my arrival, that wasn't how I expected the assessment to be carried out and I was interested to hear her thoughts on things. This was the most shocking bit for me - she felt mum was actually better than last year when she assessed her and didn't feel mum's case required any further input ! I was stunned and for a few minutes I felt like I had been winded, I couldn't believe her conclusions and I just didn't know what to say. This wasn't happening and I wasn't going to accept what she was saying to me as I really didn't agree with her, we discussed things and she admitted that she was using Mums notes as evidence even though she was aware they were often inaccurate and not a true reflection - WHAT !!! that's not acceptable if you know your evidence may be flawed you can't rely on it , she wasn't even going to ask for my feelings or thoughts about my Mum , she was just going on evidence she knew to be flawed !! how could this be a thorough and fair assessment ? Mum had a pressure sore at the time of the assessment but she wasn't even going to evidence that as she said an entry in the notes a few days prior had eluded to this improving - she wasn't going to follow up on this at all and this is one of the indicators on the assessment tool. The more I spoke to her the more I could see the purpose of her role was to keep a tight grip on this public money , she even said to me at one point " this is hard earned tax payers money we are dealing with ! " - I was aware of that and I felt her comment was inappropriate and gave an insight into how she percived her role. I was trying to get something for nothing I was trying to get my mum something she deserved and was entitled to, I am not a free loader and neither is my mum and her implications were very hurtful. Unfortunately her comment had made me even more determined to challenge her position and despite her best efforts to make me roll over it was now not going to happen.
I arrived back at work shell shocked and couldn't begin to explain how the meeting had gone to my colleague. I was stunned by the assessors attitude and negativity. I had asked her to clarify several areas of her scoring and I expected her to provide more evidence to back up her findings if she felt they were right. That night I wrote to the chair of the CHC to explain my lack of confidence in the process of assessment that had taken place and to make them aware of my unhappiness before the assessor had time to compile her report , I didn't want then to conclude things after such a sketchy brief assessment and I was going to make sure they didn't just rely on the limited evidence they had. This obviously wasn't going to be an easy process , challenging then isn't what most people do but I wasn't most people and I was becoming more and more determined to get Mum recognised in her struggle.
The assessment disregarded many elements of mums condition as they were deemed part of the disease process , this wouldn't happen with any other chronic condition but it suits the assessment purpose when dealing with dementia to just label things such as withdrawal , being quite or depressed as the disease process without actually gaining evidence to support it. The assessor got Mum to smile so felt mum wasn't suffering from any low mood or depression even though she had lost her husband and was trapped in this horrible illness. That was such a tenuous shallow way of evaluating someone I cannot believe it could stand up to any scrutiny. My complaints detailed fully all the areas of the assessment I was unhappy with and the areas that I wanted assessing further, I was not going to wait for the assessor to draw her conclusions I was making it known immediately that I wasn't happy with the way things had been carried out. I received a reply to my letter stating that my concerns would be looked into and that the further evidence I was requesting would be sought. They also acknowledged several key points about Mums condition that had not even been touched on in the assessment , some of these were significant and of critical value to Mum's case. It was agreed that once the further evidence had been sought the assessor , the chair of CHC and myself would meet again to discuss the case further. I took the chance at this point to also indicate that the pressure ulcer the assessor had felt was not worthy of mentioning was still present and actually not improving as the paperwork suggested , this just added weight to my argument that the assessment had been sketchy and not robust , this may be ok for some people but it wasn't going to be ok with me. Just writing the complaint and detailing my concerns about the assessment helped me to see that I was right , Mum was being treated unfairly by the process and with the detail and evidence I provided it was going to be hard to disregard many issues that the assessor hadn't felt needed to be mentioned but were actually of major importance to how Mum's dementia was impacting on her life.
Standing firm with the assessor had been a hard and demeaning process , she made her comment to me about tax payers money and then even asked if I was an only child, I am , she then said "so the money your Mum pays at present would go to you then if she is awarded funding ?"- this was an attempt to make me feel bad about challenging her but It didn't it just made me more determined to fight for what my Mum deserved, money wasn't the issue , the issue was that because dementia often robs people of their basic instincts and communication processes then its easy to make assumptions about them , the assessor was making many assumptions using what she knew to be flawed evidence. She spent around 10 minutes with my mum and was happy to draw multiple conclusions based up on this , but she wasn't prepared to listen to me or the nursing staff , we are the people who deal with mum day on day , I am the person who knows her best , I am the person who sees how she has declined as she fights this awful illness and it is truly negligent not to take our views and evidence into account when dealing with such complex matters. Knowing that more was now being done and that I was pushing for mum to be assessed properly made me feel slightly better about the process. no time scale was set with regard to meeting the CHC team again as it wasn't possible to put a deadline on the evidence gathering and I was happy to let this take its course, I had nothing to loose now I had made my position clear and I could wait it out , the more evidence that was gathered the more it would strengthen mums case and this was all I could hope for.

New year , New Challenges ?

Christmas was a quiet affair , we all visited Mum in the morning , she was with the other residents in the lounge and they were all receiving Christmas gifts before their Christmas lunch.  To mum it's just a day like any other but I make sure she has gifts and that we spend time with her.  The care home staff were lovely making everything really festive for the residents and making sure they all had a good day.
We spent the rest of Christmas day at home with Neil's parents just a quiet Christmas day spent with the ones who mean the most to us. Just enjoying each others company but without doubt missing one special person - my Dad , it was hard, our first Christmas without him , especially after last Christmas had been so miserable with him suffering so much. People are right when they say life goes on ,because it does ,but some bits of you stay in the past with those who are no longer with us.
When we visited mum on Boxing day she was in bed which was unusual but the Nurse explained she had the start of a pressure sore on her sacrum so rather than having her sitting they were nursing her in bed with regular turns, this was sad to hear but these type of things happen it just a fact. I was happy that skin inspections had picked up in this and that it was being managed.
The rest of the holiday passed in a blur we visited family in Lincoln and then the weather turned and the rest of the break was spent avoiding high winds and lashing rain.
The new year is often quiet for us I have, as I have got older, just wanted to spend it with family or good friends , no big nights out or lavish celebrations. This year was no different we went out for tea then chilled out at home with a movie and fizz - cosy and relaxed.
Once we got back to work I set my mind to finding out more about CHC ( continuing Health care ) and I was surprised by what I read on line. CHC is a huge resource of money but reading forums etc very little is known about what applying for CHC funding involves and what the process is. Not one to be put off I downloaded the on line CHC toolkit and had a good read through it. In my opinion Mum certainly qualified for CHC funding in some way or another and I was surprised she had previously been turned down for it on two occasions. I set about collating evidence about Mum's condition and how it impacted on her care needs and chatted with the staff at Mum's care home. They all thought Mum received CHC funding already and were very surprised she didn't. I read lots and lots of imformation on line and the more I read the more I realised how hard this CHC money was to access and how laborious the process of being awarded it can be. in the words of one on the nurses , "CHC money is only available if you have one foot in the grave ". I was becoming more and more convinced that Mum should qualify for CHC funding and it was difficult to see any good reason why she had been refused it. I contacted CHC and discussed my lack of involvement in the previous assessment - various excuses were rolled out but I wasn't prepared to accept them and they reluctantly agreed that Mum could be reassessed. I was confident about this , since Dad had passed away Mum had certainly deteriorated and I was sure the CHC assessed would be able to see a huge change in Mum's condition. An assessment was booked and I started reading all I could about the CHC process and how other people in my situation had dealt with it. Some of the stories were pretty grim to be fair and in most cases the CHC assessment team don't come out of it well. I found all this information so useful because I knew the right questions to ask and the important points of the asssessment., I knew Mum was certainly fitting a lot of the criteria to receive funding so  I was ready for the CHC assessor and had all my documentation ready . Bring on the assessment.

Accomplishment

Well the marathon came and went - and we both completed it ! The sense of accomplishment was amazing there were tears when I finished and I was just glad I was on my own as I managed to regain my composure before I met up with Rebecca and our friends who had supported on the day. I was elated and I knew my Dad would have been so proud of me ! I felt so close to him as I crossed the line. This allowed me to quantify just how far I had come. Yes, there are so many sad times to our story, but there are so many good times too and these take on even more importance knowing what we do know about how precious life is. Completing the marathon raised £1500 for Sue Ryder hospices and I so pleased that I managed to give them something back. The marathon was hard without doubt one of the hardest things I have done but it was something I had to do. It times like this that I so miss my mum as she was before her illness , I could tell her what I had done but there was no flicker of acknowledgement from her for it and I know she would have loved to share my pride in the achievement.  The week after the marathon passed in a bit of a blur - aching legs and tiredness like I had never known but nothing could dull my sparkle !
The onslaught to Christmas began again. I remembered helping Dad with his Christmas cards the year before and reflected on the huge loss of the last year. I am not a Christmas person in fact I don't really like it , heading to a log cabin with my nearest and dearest would be my ultimate guilty pleasure at Christmas. Hiding away until it was all done with ! Having Rebecca means that Christmas has to be celebrated , gifts have to be exchanged and brave faces have to painted on ! She loves Christmas and despite my dislike of it I always go all out to ensure it doesn't rub off on her. Having such a small family can be a blessing at times but it makes Christmas much quieter  and I know Rebecca finds that hard.
While looking for Dad's address book to get some family addresses for Christmas cards I found some letters from the containing health care ( CHC) team - I hadn't seen these before and It would appear that just before Dad passed away CHC had assessed my mum and decided she wasn't eligible for health care funding - what did this mean and what was the CHC funding they mentioned in the letter ? I started to look in to this and from information on the Internet I found that CHC is a huge resource of money that can be used to pay fully or partly for a persons care dependant on their health care needs and limitations. Interesting - I hadn't really been aware of this before and certainly no one had ever mentioned to me that Mum had been assessed. Mum is unable to verbalise her needs or requirements so I was interested to find out more about this assessment process and how it had been carried out, had anyone been there to articulate Mum's needs and requirements ? I was going to have to do some research about this process and see what it meant for mum long term ? I was not really happy that I hadn't been involved in the process and was even less happy that I hadn't been made aware it was happening. I was going to try and find out why this was the case and the implications of it. This was the top of my list to assess in the new year - we just Christmas to get out of the way now !

Rising to the challenge

Mum seemed relatively stable with her dementia and was spending time in the lounge with the other residents on most days. She was now being hoisted as she was unable to transfer safely. This was something I often observed to see how mum interacted with her carers. She wasn't wary of them at all and trusted them implicitly. This was comforting for me as I knew if she was worried or unhappy with the way they cared for her I would be able to see this in her reactions to them. Anyone with a loved one in care has all these worries constantly, we all know that not everyone who holds a position of responsibility acts as we would like and we all read and see the media reporting on the horrible things humans can do to other humans. Its a constant worry that I have about mum , and her her care , not for any reason or in response to anything I have seen happen, it's because Mum has no way of telling me if anything isn't right with her care. She can't communicate any concerns or share any fears with me and this means I am flying solo on making choices about her needs and requirements, this is huge responsibility and I second guess myself on all aspects of the decisions I make for her. I have to represent her and I have to ensure her voice is heard. There is only me to make the decisions and this makes it all so challenging. Making the wrong decision will have significant consequences for mum and this preys heavy on my mind. I use my visits to mum to just sit with her , feed her , spoil her with chocolates and sweets but also to observe her care and her interactions with the staff. This is my only indicator to her feelings and while I know its in no way reliable its all I have. I talk to mum constantly when I visit , its hard as there is rarely a response from her, I tell her about things that are on the Tv , things that happen at home , things that Rebecca does , mundane things that make our relationship seem  normal. Having our roles reversed is strange and it has altered our relationship over the years. I have become the one who shudders all the responsibility for mum as opposed to her caring for me , this was so difficult in the early stage of Mums decline , showering her , helping her to dress, brushing her teeth, it was so difficult not to feel frustrated at the situation we were in. It hard to deal with the shifting balance of care  and not feel some resentment that its something you cannot control. Without doubt I have felt frustration and resentment at the way mums illness has robbed me of her, robbed her of time with Rebecca and her family and denied her the chance to show my Dad what he meant to her before he passed away. I never mention Dad to her at all , as I would hate this to stir up memories and her to start getting concerned about why he isn't in her life any more.

One big thing was coming closer and this was a challenge I had been  determined to achieve. Before Dad passed away I told him I was going to run a marathon. He was shocked and told me that I should forget it - it was too much and too much pressure to put on myself. I had been a runner for a few years , certainly not fast but determined, I had never run more than 13 miles before so this was a whole new challenge .  Despite training and preparing I was very worried that I had taken on too much and that realistically I couldn't do it. I had been kindly sponsored in my endeavour by so many people my sponsorship total was £1500 so this was in essence an added pressure , the money I was raising was for Sue Ryder the charity who run the hospice where Dad was cared for .It was a small token of how much I appreciated their support when my Dad was in their care. The training had been an added stress , and I had certainly underestimated that time it would take up but I couldn't change my mind now , I had set myself the challenge and I was not going to fail ( I hoped ). Fitting in the training runs became harder and harder as the distances increased but this had to be done so much was riding on me completing it. Neil was running with me and it was a huge challenge for him too.
Running is my way of relaxing - switching off from whats happening around me , but with such a challenge it was hard to be able to switch off , we both felt the pressure of the race as it was nearing and I was so worried Iwould let everyone down.

As spring turned to summer our thoughts turned to the school holidays and our planned summer holiday. This is something that for the last few years has involved lots of planning to ensure Mum's care while we were away, organising suitable respite care had often proved difficult. Despite our plans last year for a fully relaxed break Dad's illness had led to an unplanned stay in hospital and had caused things to not go as planned. This year we had booked a  break in Tenerife and although we needed this as a family I was obviously very worried about leaving Mum. Being mum's only visitor means I feel immense guilt when I can't visit because I know no one is visiting. I know Mum has lots of interaction with the care home staff but its in inherent worry about her being lonely often its irrational I know but I always think about how lonely I would feel in her position.The worry is always there while we are on holiday - will Mum be OK ?, will she be missing us ? will she feel lonely? will she think I am not going to visit again ? will she be taken ill ? etc etc. The list is endless and so is the worry. While I am away I keep my phone on all the time just in case and as my holiday gets nearer the worry level increase exponentially. Despite the worry we had a lovely break and although as usual we wanted to stay away forever I was happy to come home and visit Mum. Another worry is will she respond to me after I have been absent for a while ?- although she never  speaks to me or uses my name I know she is aware that I am a familiar face and I belong with her, I have no way of knowing if she knows who I am but she certainly responds to my presence and that is so much more than some people get from their loved ones as this horrible illness takes hold. The one thing I cherish is when I say "Mum " she always responds by looking at me or waking up so maybe she does know who I am ?? I am happy to let myself believe she does.
Things were as if I hadn't been away when I visited her - she showed no confusion about my presence and seemed just the same as before I went away. When I come back from holiday I always visit several days consecutively in the hope it puts me back in her mind and doesn't let me slip away from her.
Things had started to happen now regarding Dad's estate and his absence from my life was so hard to bear at times, every week I seemed to be dealing with some form or other about his death and it was all so raw. Rebecca was about to take her Black belt in Taekwondo and we were so proud of her , but the person who would have been the proudest was missing and on the day of her graduation Rebecca and I felt his loss - he would have been so proud to have seen her achieve her black belt, one of our favourite pictures is of him with Rebecca after one of her Taekwondo graduations. He loved seeing her achieve things in her life , it always amazed me how forward thinking Dad was for his generation. He instilled in me an attitude to achieve my goals and always to believe in my abilities. He helped me to stand on my own two feet and then my tip toes to reach my goals.  Mum was the same dreams and ambitions were always encouraged and they would have both been the same with Rebecca.  Athough they spent

so much time together when she was younger Rebecca  bearly remembers spending time with my Mum before her dementia took hold - but mum invested so much of her love and encouragement in Rebecca's early years, painting together, baking together , talking together, learning together , and laughing together. I lost my grandparents before I was 12 years old and I know how little I remember of them so I know Rebecca's memories of my Mum and Dad will fade. The one thing I remember though is how much they loved me and that I enjoyed spending time with them, I hope this is something Rebecca feels for my Mum - as I know visiting her now is hard for Rebecca. I know, she knows, how much her Grandad loved her as he could tell her but my mum is denied this due to being locked away in this cruel illness. I tell my Mum everything about Rebecca , what she's up to at school , where she has been , what we do on a weekend and I would love to think that my Mum understands - no one really knows the answer but I can't and won't shut her out of our everyday life she is a big part of it and I will always involve her in it.