Uphill struggle

After last weeks blog I am hoping that the purpose of my blog is becoming clear. I have never had to deal with so many agencies and jump through so many hoops in my life to get somewhere, the whole process, not just of coping with my Mum's illness, but getting her the help she needed has been such a steep learning curve. Adult social care , social workers, local authority finance teams, care agencies the list is endless. All of this has been so difficult to navigate. I consider myself to have reasonable common sense and logical thinking ( some may disagree !!)  but nothing has been easy to work through and the hurdles that have had to be jumped have been so high. Information isn't passed from care giver or agency to another care giver , you feel like a stuck record saying the same thing over and over.  No one wants to tell you how to get help or how to access services they just want to pass your case on or in many cases just tick the boxes and sign it off , regardless of wether the person involved has got the care they need. This is not acceptable in my mind.  I hate to see people neglected and not treated as individuals - I understand all too well how stretched the system is but I won't allow this to be an excuse for allowing the care or services  my mum receives to fall below the standard that I consider to be acceptable and more importantly safe. The only aspect of the process that took place in a timely manner was Mum's financial assessment. The cogs can turn very slowly if you want to access services but speed up when the cost of those services needs to be paid for. I hope that my blog can empower others who are trying to navigate the system , to give people the pointers to get the help that they need and deserve , as my experience with the CHC proved they were not prepared to assess my mum correctly and that wasn't acceptable, many people probably don't even realise they can be involved in the assessment process and more importantly can challenge the process - I didn't and my Mum had two failed assessments that I was unaware of. No one should be denied the care they deserve and I am passionate about this. Most of those needing to  accessing these services now were the original people who were promised to be cared for from the cradle to the grave by the creation of the welfare state in the 1940s. I just hope that reading my blog can help others to achieve the results their loved ones deserve. Watching my Mum slip further and further away is horrible but I am confident that my persevierence  is ensuring she gets the care she needs which is some small comfort in all this , I can look back on things in years to come and know I stood up for my mum and I worked hard to ensure she wasn't neglected or ignored. I have learnt some hard lessons so far on this journey and I have used these to shape future decisions, Mum being admitted to hospital is now very unlikely because in the absence of a life or death situation I cannot allow her to go in hospital. This view is shaped by her previous neglect while in hospital and the more I talk to people the more I realise her experience isn't unusual and this is so sad. People like my Mum don't have the capacity to speak out and we must be prepared to highlight issues that affect our loved ones in the hope that one day we can have a social care system for people that is safe and effective.

Today's the Day !

So the day of the CHC panel meting finally arrived, I was nervous and didn't sleep much the night before, insomnia is always my weakness when I have anything on my mind. I knew the meeting would be sometime in the morning so I wasn't expecting to hear anything from them until late afternoon or maybe the next day. As it was a Wednesday and I wasn't working I visited Mum as usual late morning so I could help her with her lunch. Just as Mum was finishing her lunch I received the call from the CHC team. Nerves were on edge when I answered the phone, it was nurse who had initially assessed Mum and who I had disagreed with from the outset. She cut straight to it - Mum had been successful - the panel accepted that she was eligible for fully funded care due to her complex medical and physical requirements - I was so pleased I could have cried. I felt that my fight had been vindicated - I was right to have stood up to the CHC team and battled to get Mum's needs assessed properly. No further supporting evidence was needed to assist them making their decision , the information that had finally been gathered on mum's condition was enough. What she told me next was even more startling , the funding was also to back dated six months from the initial assessment date, the evidence highlighted Mum's declining state and it could be traced back a further six months. This was not expected at all , I was elated to have secured full funding for my Mum via CHC but to then find out she was getting this backdated too was just wonderful. I felt so proud of what I had achieved for my Mum , I had secured her the funding to provide suitable care for her and this was a huge victory. My pleasure could have easily turned to anger though when I reflected on the whole process , if I had just accepted the initial assessors findings Mum's case would not have even received a review  and certainly would not have been presented to the funding panel for consideration. This was a difficult thing for me to process , we had been lucky that I had been prepared to challenge the initial assessment and that I had been vocal in my disagreement with them, how many other cases are dismissed at this initial stage ? how many of them really should not be dismissed but actually assessed in much more depth ? what about those people in Mum's condition who have no one to stand and fight for them ? I suspect there is a huge majority of CHC assessments that never make it to a funding panel review.  Some of these cases I accept shouldn't go to the panel as the evidence isn't there to support the funding but how many cases don't make it because the evidence isn't looked for or accurately recorded ? There was never any doubt in my mind that my Mum was eligible for funding it was an obvious given - but should I really have had to fight so hard to achieve this, should I really have had to point the assessor in the right direction about Mum's condition ? - The answer is no ! I think that the initial assessment was skewed in a direction that supports the failure of many cases to get considered by the funding panels and this is wrong. My experience shows this. I had been successful in my challenge but I did feel upset that the process had been so difficult and if I had just accepted that initial assessment nothing would have gone any further and Mum would have been denied the vital finding that she was eligible for. Anyone reading this blog with loved ones in care should make themselves familiar with CHC and what it is, it can be such a vital source of funding in peoples darkest times. If this blog helps one other person to receive funding that they are eligible for the Blog will have served it purpose.

CHC assessment round 2

So after waiting patiently for several weeks I received a call to meet with the CHC assessor and the chair of the CHC board. I was nervous about this as you would expect but I had been diligently compiling evidence myself over the weeks and documenting everything of relevance. Mum was still in bed with the pressure ulcer and despite the initial assessment concluding the pressure ulcer was healing this had proved not to be the case. Mum was now unable to feed herself which was something that had been brushed over by the assessor at our initial meeting, this without doubt is a significant change in her circumstances as it makes her care needs much greater. After I had given Mum her lunch I met with the CHC team. The atmosphere wasn't overly cordial as I had questioned the motives of the assessor in my complaint letter and here we were face to face again. The bigger picture was what I decided to focus on I wasn't there to make friends or back track I was there to get Mum's condition and complex care needs recognised. The Chair took control of the meeting and went through all the evidence that had been gathered in light of my letter and extra information that I supplied - over and above that documented by the assessor. We discussed the assessment sheet in detail and lots appeared o have changes since the initial brief assessment.  We discussed the pressure ulcer and it transpired that on the day of the assessment it hadn't actually been assessed so rather than check again on the process of the ulcer its presence had been disregarded- this proved to be a major flaw in the document as the ulcer was still present and actually was increasing in size and this should have been followed up on the paperwork. This just backed up all I had said about the assessment process not being fit for purpose and in effect was all I needed to substantiate my feeling about the initial assessment. The upshot of the meeting was that yes my Mum had deteriorated since the last assessment - this was in contrast to the initial findings that she had actually improved ! I was relived but not surprised I knew the initial assessment was flawed and I suspect many cases applying for funding are dismissed at that initial stage - my question now is how many should actually be dismissed ? I suspect this is much less. There were still hurdles to jump though, Mum's case would now be presented to the funding panel who would ultimately make the final decision on funding. This was a small victory in itself though as the initial assessment wasn't even suggesting mum's case went before the panel. I left the meeting drained - I was happy but really felt that I should not have had to put so much effort  in to getting Mum's case this far. The deterioration in mum's condition was significant and obvious and it was bitter sweet fighting to get this recognised. We certainly hadn't won the war but I had fought the first battle and and come out on top and this was something to be proud of. A date was set for the panel review and all I could do now was wait and see what there decision would be.
I suspect many who go down the CHC route are unaware of what the assessment looks at and how it is scored - this information is available on line and I would urge anyone who is going to a loved ones assessment to read up on things before hand. It proved invaluable to me and meant I could actually challenge the assessor on areas that I felt were not being assessed properly. If you don't think the case has been fully assessed than challenge it - yes its daunting but you know your loved one best and you know how they are deteriorating and how their care needs and increasing , don't be pressured by authority , stand up and speak out if you think things are not being taken into account properly. I suspect very few people do this as they don't know how to , I didn't ! Just sit down before the meeting and note what you consider as important factors , refer to the assessment tool and see if these are assessment criteria. After the assessment you are still unhappy put your information and issues and writing and ensure they are followed up.
All I could do now was wait for Mum's panel hearing it would be a nervous few weeks but I was happy I had done all I could to ensure her assessment had been thorough - eventually.

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.

Responsibility !!

There was lots of paperwork to complete now Dad had passed away , as I said earlier his affairs were all in order which was a massive help. When Mum was initially diagnosed with her dementia they both made wills and organised their affairs which was a blessing. I knew all their wishes and I could just follow their instructions. Now if anyone passes away with more the £5000 in assets then probate must be completed. This involved huge reams of forms and paperwork which I handed over to Dad's solicitor to complete, I wasn't in the right frame of mind to be completing such complex documents and I really felt I didn't have the skills to do it. Dad had passed away in April and even though his affairs were all in order probate didn't come through until the end of August. Then began the complex process of closing down accounts and insurances, sounds like it should be a simple process , we had probate and Dads will but this was quite difficult in some cases. I tended to just let the solicitor deal with this , I tried not to give it any thought and just let the process slowly move along. Spending time with my mum and family was my priory.  In the big scheme of things the costs involved in the solicitor sorting things out were significant and not something that everyone has the ability to afford but I honestly felt it was a process that was beyond me. We also had Mum and Dad's house to sort out , Dad had left his half of the house to me so now Mum and I owed the house together , again this involved some paperwork as the house wasn't registered with the land registry. Emptying the house was awful I found so many items that held so many memories for me , it seemed such a clinical final process but again it had to be done things couldn't stand still. I still call it Dad's house and probably always will !
Mum seemed to be doing fine , and didn't appear to be missing  Dad , or maybe she was, we would never be able to tell. They had been married 54 years and hardly ever been apart so his absence must have had some effect on her in some way. She was more often than not sat in the day room now with the other residents so I felt secure that she was getting some good social contact. Often when I visited bingo and other games were taking place- Mum couldn't participate but she was always in the room and watching events around her. I took her magazines every time I visited and she would spend hours flicking through them, often stopping to gaze at pictures of babies or animals. Mum had now stopped communicating , she would on occasions say the odd word - yes / no but not in any context and this was hard , visiting was generally me talking to her and never eliciting any response. On one occasion though as we were flicking through magazines I asked her if Frank Sinatra was dead - immediately she said " yes " with such conviction that I felt sure she had understood the question, as anyone involved with dementia knows - there are constant surprises and this was one for me. I was happy that Mum was spending time out of her room with the other residents as I couldn't visit every day but didn't want her to be lonely, she was always a quiet observer in the day room unless someone annoyed her ! she had always been a quiet lady , not confrontational but on occasions if a resident in the day room was shouting she would get annoyed and her facial expressions would give it away. It is strange to say but I was nice to see sometimes because it proved she was aware of what was happening around her , she wasn't locked away and remote from her surroundings. Although it's so hard seeing my mums decline I treasure every visit as I know time is limited and we have to enjoy the time we have together. Dementia is such a cruel disease but I won't let it rob me of time with my Mum , visiting is hard, no conversation , no chit chat ,no emotions but its time spent together and that is what is important.
Dementia makes you face hard decisions and make choices that you really never want to,  I can look at things in an objective way and make decisions based on evidence rather than emotion- some may see this as me being hard and lacking emotion but its not the emotion is raw i can assure you but i have to not let it cloud my judgement. It is often easy to just follow your emotions in these situations but often this isn't the best option and the harder decision is. Does that make sense ? For example signing the Do Not Resuscitate document , that is something many relatives won't do but I had no hesitation it was the right option it allows Mum some dignity and in the worst case scenario would reduce her suffering. Decisions like this aren't easy to make and I would never judge anyone who can't make them.

Goodbye.

I arrived at the care home with Neil and went to sit with my Mum , I was trying my hardest to hold it all together so she wouldn't get upset , she was quite relaxed when we arrived and very smiley , this was infectious and despite my heartache it was good to see her smile. Neil and I said nothing about what was happing in the room next door we had decided not to discuss it with mum that evening - we were unsure how it would affect her , if at all, and wanted to get advice on it first. Dad had been quite clear that she wasn't to be upset by his illness and I had to respect that. The nurse came to collect me and took my directly into Dad's room - before I knew it I was there in the room with him, this was something I hadn't even thought about and if I had I maybe would not have wanted to go in, as it was I didn't get the choice . Looking back if I hadn't gone to see Dad then I may well have regretted it so although at the time it seemed forced and difficult it was actually the right thing. I didn't want to touch Dad in case he was cold - I could not have had that as my lasting memory but Neil touched him and said he was warm so I held his hand. we were both so upset, we had known this was coming but that doesn't prepare you for the way the grief and loss overwhelms you. .It still does to this day, without doubt life goes on and you learn to live with it but it never leaves you, it's like a shadow always there.  Before leaving I composed myself and sat with Mum for a short while - she nodded off to sleep and I went home with Neil.
Anyone who knows me knows I am organised( bit of an understatement ! ) for the main part and this now kicked in , Dad had made all his wishes known to me in advance and I knew which undertaker I had to call and what his wishes were. I rang and got things in motion. I had no experience of the processes and procedures but the undertakers were amazing talking me through everything that needed to be done. By the end of the next day I was on top of things and things were all organised. I discussed Mum with the Gp when I saw him to collect Dad's death certificate, he felt as did I that there was no value in telling Mum about Dad's passing as it may not register with her and if it did it could have a negative affect on her. I still don't know if this is the right thing, but is there any right way to deal with a situation ? I would expect she misses his presence but again there is no way to know this at all. Is this something anyone has any knowledge on ? I just had to go on instinct.
Rebecca was still on holiday from school so we spent a few days together just doing normal things shopping, eating out etc, things that had often fallen by the way side in the muddle  of the last year, I loved Rebecca's company and we enjoyed our time together. It was just a simple pleasure that we hadn't had the chance to enjoy for far too long.
I decided that I should speak at Dad's funeral - he had meant so much to me and I wanted to do this last thing for him. Inevitably I broke down at the end of my eulogy however strong I wanted to be emotion was certainly stronger. His funeral was a day of sadness without doubt, we had made the decision that it wasn't in Mum's best interests to attend. She hadn't really ever left the care home and previously she had attended her parents funerals at the same location where we had arranged Dad's funeral , could this evoke memories for her and upset her - we couldn't take that chance. Decisions like this are the ones I find so difficult - its like I am taking over and deciding things for Mum- something that doesn't sit well with me, however I have to just do it and always think of what is best for her rather than what is easiest for me ! I 't wasn't goodbye for me as I knew I would never say goodbye to him, friends and family joined us after the service at our house and we celebrated his life , the sun shone and we enjoyed some quality time together sitting in the sun our thoughts very much with my Dad.
The next day seemed empty , Rebecca was back at school , Neil was at work and the loneliness kicked in - I had kept busy since Dad's death but that was all taken care of now and I finally felt empty.
Mum was now my responsibility and I had to ensure I maintained what quality of life and care I could for her. I needed to be sure my Dad would be happy with what I was doing for her, it had been unsaid between Dad and I but I know he knew I would't let my mum down. Time to become the responsible adult !!!

Reality !!

The hospice arranged for Dad to return to his care home where Mum was living , his loss of movement in his leg was a worry for us all and it marked a serious progression of his cancer. The care home manager had changed his room and when he returned he was in the room next door to my mum. This meant they could still see each other and spend time together. Dad was practically bed bound now so it was mum who visited him. The staff were accommodating bringing her through to see him in the wheelchair ,and they understood the importance of her visits for my Dad. Mum never reacted to Dad and his gaunt appearance , she often smiled at him so certainly still recognised him. Looking back to this time I feel sure she recognised me and my Daughter too, maybe not for who we were but that we were familiar faces who belonged to her. I think she always thought my Daughter, Rebecca, was me as a child and I was just someone who always visited. This wasn't a concern for me it wasn't anything personal it was just the way the disease was manifesting. My mum is and always will be my mum her perception of who I am during this time is irrelevant.
Dad was very frail now fading before our eyes. Easter was approaching and I had some time off work, I visited them both every day making the most of the time I had with Dad, soon after Dad's return to the care home his Gp phoned to warn me he felt that Dad had only days left , he was surprised the hospice had sent him back to the care home , but he was now too unwell to return to the hospice. Even though I knew where things were heading this was still a huge shock. However much we take in somethings don't want to stay with us and we only see what we want to see. Easter passed with visits from family and friends which Dad loved, he was animated when he had visitors and enjoyed the company. Dependent on his medication he could be very confused and lethargic, but again things need to go in context and this wasn't my Dad it was his illness and his medication.
On the 14th of April just as I had returned to work I got a voice mail - quite how I don't know ,as the place  I was working had no mobile signal , but as they say everything happens for a reason, it had been left an hour before but had only just highlighted on my phone. It was the care home summoning me , Dad was fading and they felt I needed to come over ASAP, I was in shock hoping I wasn't too late already. I left work, leaving my colleague to deal with the clients who were now not getting their scans. She dealt with all the problems this caused - and although she said it was fine I know she will have had a difficult afternoon telling people they couldn't have their scans. She knows who she is and what her support means to me.
As I arrived at the care home the Gp was waiting to come out - my heart fell !was I too late ? he took me aside  Dad was still with us but he expected him to pass away in the next few hours. Dad's friend Jim had visited that morning and this will have meant the world to Dad , some weeks before Dad had told Jim how much his friendship had meant to him and this was the only time he had mentioned his mortality. I sat with Dad all afternoon , he was semi conscious so I will never know if he knew I was there but I held his hand and told him what he meant to me and my family, I hope he heard but I will never know. I kept popping through to see mum not giving anything away as I knew Dad would not want Mum upsetting , how would she react to his death , should I tell her ? all these are questions that there is no answer to.
Around 6 pm I went home to get things sorted for Rebecca , to give her some tea and get her things organised for the next day. Before I left I told Dad I loved him and would be back soon. while I was at home the call came Dad had just passed away. The tears came immediately and I thought they may never stop. Telling Rebecca was so hard , she hadn't seen my Dad for the last week as I didn't want her to remember him looking so ill , I wanted her memories of her Grandad to be happy ones not dominated by his final appearance. She was heartbroken , she like us knew that he was dying but emotion is a powerful thing and it surprises us all in its ability to overpower us.
Again I had the support of special people ,Rebecca headed off to spend the night with her best friend , she needed the support of people she felt comfortable with while Neil and I went to the care home to make the arrangements regarding my Dad and to sit with my mum. This wasn't the place for a small child, it wasn't the place I wanted to be either but life doesn't stand still to accommodate grief and shock the world is constantly turning and as they say life moves on, however much we may not want it to.

New Year , New challenges

I visited Dad later on New Years day and he was quite down , eventually he told me he didn't want to go home he wanted to stay in the hospice - how much did I think the fees would be ? I explained that wasn't how it worked staying there wasn't an option but he had reached an important decision in admitting he didn't want to go home. I already strongly suspected he wouldn't cope but he had come to the same conclusion. He felt he wouldn't manage and that was a pivotal point. I had already considered the options surrounding this scenario and had a few ideas. I knew that the care home where mum was had space at that time and maybe him moving there was an option, I wasn't sure how he would feel about this but for me it meant that they could be together and I could spend quality time with them both , time was of the essense as I knew that it was running out. Dad was a bit unsure when I first suggested it to him so I left him to think on it. Eventually he agreed that it was a good option and I set the wheels in motion for this to happen. The process was quite smooth really in contrast to finding Mum a home and settling her. Dad moved in to Mums care home a couple of days later and although he found the adjustment difficult he knew he had made the right decision. As I have said before I would have supported Dad in moving back to his home but I wanted him to be safe and cared for and I knew that him being alone at home wasn't ideal. I finally got some of my life back as I only had to visit one place to see both Mum and Dad , I didn't feel that visiting was just a box ticking exercise. I actually felt as if I was spending time with them them both again. Dad was till struggling on a major level with his pain and he could be quite difficult on occasions as he was just suffering so much. The staff were on the whole excellent but they couldn't work miracles. Every time I visited I would take Dad to see Mum and I genuinely think he enjoyed the visits and being able to spend time with Mum again. We moved a lot of Dads things into his room to make it feel homely and we visited as often as possible.
Mum was ticking along nicely through all the stresses with Dad , and this was a blessing. Her dementia seemed quite stable and she was without doubt very settled. She didn't seem upset that Dad had been absent for a while and he was adamant she wasn't to be told about his illness, he didn't want her to be upset by anything. It's so difficult as mum is unable to communicate at all so she has great difficultly expressing any feelings or emotions, which often means we read into situations how she may feel and we could be way off the mark.
While Dad was in the care home he was visited by the CQC - the home was , as many are, struggling to pass the CQC assessment despite scoring well in previous assessments, Dad was questioned extensively by them about how he felt the home was run and how the staff attended to his needs. They then moved on to me , I am familiar with the CQC and their assessment processes so I was able to be constructive but to the point about the issues and problems I had noticed. By the same token I was also happy to impart my feelings on all the positive aspects of the service offered. Hopefully our input would go some way to improving things and making a positive contribution.
During this time Mum was also assessed by CHC ( continuing health care ) I can't tell you anything about this as neither myself or my Dad were involved in this despite Dad living in the same place. The communication around this visit  and assessment was shocking and this would later be an issue that I would address with the CHC team , they wouldn't get away with a clandestine visit in the future. We only knew of the meeting several months later when I found some paperwork they had sent my Dad ( to his home address ) about the assessment and Mum's failure to meet the funding criteria. Any one with a loved one in care with a condition such as dementia must make themselves familiar with CHC - this is a huge game changer for some people and is hardly ever discussed or mentioned by the social care team. In short if your loved one meets the criteria set by the CHC assessment tool they could qualify for full funding of their care needs. This can reduce a huge financial burden and stress that many families face when going down the care home pathway with regard to how the fees for care are met.
By february Dad was really struggling with his pain and would often be in tears when we visited, Neil and I discussed moving him into our home with McMillan care but we were worried how he would manage while we were at work. This was awful because neither of us had the option to be at home to care for him. He was visited by the district nursing team on one occasion who gave him a shot of strong painkillers , this put him in a very sleepy , lethargic state for a couple of days and resulted in him being admitted to the local hospice again. The pain killing injection had proved toxic and he was in a semi conscious state which they felt needed to be managed at the hospice.
The treadmill of visits began again , the hospice was at the other side of Leeds so I had to visit Dad on days when I wasn't visiting Mum as the distance between the two made in impossible to combine visits. February slipped in to March and Dad was becoming much weaker by the day, he could't now walk unaided and was beaming confused on occasions. I was concerned about every aspect of the tumour and its spread , had it spread to his brain , was it compressing the nerves to his legs ? etc etc. I worried about everything , none of which was in my control. One sunday I visited with Rebecca and the sun was out , it was a lovely spring day, we got Dad in a wheel chair and out round the gardens, I notice as we moved Dad into the chair that he wasn't moving his foot , he was just dragging it. This was a red flag for me , I knew that he could obviously no longer co ordinate his movement and this meant significant disease progression. I mentioned my observation to the nurse who monitored him the next day and they agreed. One of my worries had manifested itself and although I knew the disease wasn't ever going to stand still the progression and its obvious outcome was looming every closed for us.

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.

.....and relax

We arrived safely in France and settled in to a relaxing family break, we spent our days chilling by the pool or visiting the local towns, I spoke to Dad every day and he was fine. He had an appointment at hospital to check his bloods and start his steroids in advance of his first chemo and was feeling quite upbeat. He wasn't really driving anymore due to the effects of his morphine but was being sensible and I was glad of that. On the thursday I called him a few times through the day but he didn't answer , he wasn't good with his mobile so I wasn't too worried, however once it got to about 9 pm I was starting to worry, then he called me ! I was a bit taken a back but glad to see his number come up on my phone, when I answered though it was his neighbour - my blood ran cold. I immediately thought the worst. As I turned out Dad had been admitted to hospital from clinic and was in St James, he had given his neighbours a scare when they couldn't get him to answer the door at home , they had got ladders up to the bedroom window to check if he was ill and had eventually tracked him down to St James'. His oxygen sats were low and he was going to be kept in until they improved as he wasn't well enough to go home. We had a little chat and he seemed bright enough- a brave front for me I suspect,  as to that point ,he had never been an inpatient and I am sure he wasn't happy to be there. He was worried about my mum as he was now not able to visit her and I was obviously away too.
Mum wasn't aware that Dad was ill and he was certain that she wasn't to be upset at all by what was going on, she was settled and he didn't want anything interfering with that. Now we are a small family in terms of blood relatives but here's where some special people stepped up to help me out. Melanie went off to visit Dad in hospital to make sure he was settled and to ensure the nurses were aware to keep me in the loop about things , she knew the questions to ask she fed back after both her visits and I felt much happier knowing he had seen a familiar face. Melanie even called for some essentials for him  from home so he had his own PJs etc. Thelma visited - they have been friends for 60 years so again he was so pleased to see her. Dad could come home but only with the installation of a home oxygen prior to discharge , I had no need to worry about this Melanie and Emma had this all in hand too , Melanie arranged everything and co ordinated with Emma who  waited in for installation so Dad could be back home. These people were amazing they both have extremely busy lives - Emma was due to give birth within the following 3 weeks to her third child and Melanie was working full time  , Dad and I would have been lost without them and I am eternally grateful . By the time I arrived home Dad was back to his old self , fully versed in using his oxygen machine thanks to instructions written down by Melanie. Dad had his first chemo the day I was due home and this all went according to plan. No dramas or concerns and he handled it so much better than I expected
The first thing Dad wanted to do when I got home was visit Mum, she seemed unaware that he hadn't been to visit , we don't know if this is really the case but she didn't seemed upset or worried and we both felt so much better. I was concerned about the care home environment and dads imuno-suppressed state but he was aware of any symptoms to watch for and I was watching him like a hawk. Dad and I settled into the visiting routine again , this time around my job as I was now the taxi service for Dad, payback for all those nights he had been my taxi service !  Dad still didn't feel up to driving and I was happy to say that was the right decision. Some days he was in so much pain that the morphine was not really having any effect on his pain.
It was truly awful to see him suffering so much with the pain - it was unbearable for him and some days he could nearly function. We valued every minute together but I hated seeing him in so much pain and felt utterly helpless.
Now that  Dad had started treatment he was assigned a specialist Palliative care nurse who visited him regularly, this was to keep an eye on him and to see if he was coping with the treatment, she was an excellent liaison regarding pain relief and would deal with Dad's Gp directly to make medication alterations etc.
Mum was having to take a back seat at this time , and I felt terrible that Dad couldn't see her every day but we all did our best to ensure they could spend as much time together as possible. Two weeks after his first chemo the steroids and injections started again to prepare Dad for chemo number 2 and we prepared our self for the second round.

Looking for some answers

After Dad and I had seen the Gp I was numb with shock , I had booked a holiday for the summer as I knew Mum was in good hands and I felt Neil and Rebecca needed that time away with me without the worries of the last few years, could we still go , did we still want to go - pretty trivial really but its amazing what you worry about to stop yourself facing up to the elephant in the room. Dad was adamant we were going on holiday and would not hear of us cancelling.  He was suffering with terrible back pain but until we had the results of his CT staging scan nothing could be done. As with any case like this Dad entered the fast track system and over the next few  weeks he had a whole range of tests and then an appointment at the CUOP clinic ( cancer unknown origin primary ) . I was lucky that I was allowed time from work to go with him. He was pretty chipper in clinic - there were some pretty frail and weak people in the clinic and there was no getting away from the reality of what was round the corner. The Consultant was again very informative and gave Dad the news that he had a likely lung primary tumour , the primary was tiny but the spread to his spine was extensive , there was also spread to his hip. Dad had ceased smoking forty years earlier so he had been one of the unlucky ones The hammer blow was yet to come though. The bone spread had made his disease terminal ! This would kill him and there was no cure. I can still hear the consultant saying this and my mind starting to swim. I hadn't even given that a thought but it was plainly obvious now he had said it - but I had just never even considered it !!!. Again Dad seemed pretty blasé about it all - had he taken it on board ? Or was he just being brave for my benefit ? I would never really know.
Rebecca was heartbroken when we told her the news - she was so close to her Grandad, they were like two peas in a pod. Again though she just took things on board and carried on with life she made sure she was always on hand for a cuddle with Grandad and they spent lots of time together. She really is a tough little kid and she has seen some horrible things happen to those she loves.
Dad carried on visiting mum daily and spending time with us. He didn't want Mum to know he was ill so we never talked about it in her presence in case she could understand what we were discussing and become upset. Mum's needs were always his top priority, I was struggling though juggling my emotions to the needs of them both.  I was cherishing the time we had together with Dad and I planned a special treat for him to a classic car show for Fathers day - I suspected this would be our last Fathers day and I wanted it to be a special day for him. He had been my major support all my life , he had always been the one who told me to reach for the stars and he had always had belief in me. When I had made mistakes - there had a been a few ! He had always been there for me and I wanted him to know just how much I appreciated him and all he had done for me. Through Mum's illness we had been a strong team and I couldn't let that slip now. I had to be strong for them both.
I was worried about treatment options in view of Dad's age ( 82 ) but the consultant said this was no barrier everyone is offered the treatment if they think it will some benefit - age is no limiting factor. The treatment choice was chemotherapy , initially six courses three weeks apart, and some radiotherapy to try and reduce the spinal tumour size and help with pain. Dad was already on morphine to help him with the pain from his spine , but even this was hard to manage. He was so small that if he took enough morphine to reduce  the pain it became obvious that he had taken too much and he was quite delusional.  Before chemo could start Dad had a biopsy of the tumour in his hip. It was confirmed as a non small cell lung carcinoma. Now the diagnosis was confirmed chemotherapy could could start, this was pencilled in for when we returned from our holiday so that we could support Dad. I knew this would not be pleasant and I wanted to make sure he wasn't alone at home during his treatment. The regime of steroids began in readiness for his treatment and clinic appointment was arranged while I was way to check his bloods and ensure he was ready to begin the treatment regime on my return. Dad was still playing his cards close to his chest - I had briefly discussed chemo with him and he was certain he wanted to give it a go so we were all on the same page. I headed off to France with Neil and Rebecca for some relaxation and family time. I had agreed to phone Dad daily and a couple of his neighbours were keeping an eye on him while I was away.
Neil , Rebecca and I arrived in France and got ready to enjoy some much needed quality family time - recharging our batteries ready for the rounds of treatment.

Just when you think things are settling down !

So once Mum settled in her new home we all began to enjoy our visits with her , Dad visited daily and enjoyed spending time with her without having to actually do everything for her. He was happy with her care - as was I, and I kept a close eye on how mum was adapting. Over the weeks she started to settle with the staff and they all became familiar to her and she was relaxed with them around. I took positives from this as when mum is uncomfortable in someones presence or unhappy around them I can always sense her worry and I wasn't picking up any negative vibes.

In the April ,after maintaining close communication with the nurse manager for elderly care in the trust hospital where mum had been a patient , I was asked if would meet with the following people to discuss my complaint regarding my mums care while in the hospital, the head of acute nursing , the tissue viability nurse consultant, the matron for general medicine , a clinical educator and the senior sister from the ward where my mum had stayed. The titles were impressive and I think the hope was to intimidate me with the management hierarchy , but this wasn't the case. I concluded that they had brought these people in as there was genuine concern on their part about how my complaint could progress and the implications this would have. The role of the meeting from their point of view was clear from the outset- " what do you want from this meeting ?" was asked on multiple occasions - the inference being is this going on to a compensation claim ! I wanted them to see there had been clear areas of poor care and a lack of diligence on their part and I wanted them to address this for future ward users. They provided documents which supported my observations that basic cares such as turning and repositioning hadn't been carried out. Their evidence showed gaps of in some cases 12 hours where charts had not been filled in , although they felt this wasn't a true reflection of procedure on the ward this was the documentary evidence they had and that in itself should have been a clear concern that needed addressing instantly. They were happy to accept that there had been failings in the care Mum had received and I think their investigation had proved to them that they could not in fact defend much of what I had said in my complaint. The evidence they had found gave foundation to my comments and issues and they had no choice but to accept things had been lacking on the ward - and they admitted this wasn't a new issue. The meeting concluded with all the staff present offering me an unreserved apology " on this occasion we have failed to give the care and treatment which was expected " was their conclusion. This was for me a hollow victory I should not have been addressing these issues with them - but I had to and I felt in some way pleased that I had stood up for my Mum and held them to account, I hoped I had highlighted the problems on the ward and that maybe they would look to address them. Neil had come to the meeting with me as he felt I shouldn't go alone , he was an immense support , again I shocked him though as I once again became the single minded focused campaigner that wanted answers and wasn't going to be ignored. I understand evidence and the importance of record keeping in these situations and I was able to pick out the problems with the records they produced - they could't argue about what was there in black and white.  I had held my position and fought my case achieving the apology that vindicated all I had been saying.Again I  had kicked ass !!!!

Dad hadn't attended the meeting He was worn out with it all and wanted to spend the time with Mum - I didn't mind he deserved some quality time with her ,  just watching TV and not worrying about her.  He had started collecting Rebecca from school one day a week and visiting us for tea , he had been shopping and spending time with friends all things he hadn't been able to do for the last few years. He was living again not just functioning.
He had been however struggling for a few months with a pain in his back  and now he didn't have to worry about who would watch Mum while he went to the Drs I persuaded him to go to the Gp about it. The Gp arranged some X-rays for him and off we went hopeful we could get him sorted and pain free.
The following day my whole world fell apart - the X-ray of his spine had shown an abnormality - I am a radiographer so I knew what the upshot of the report was. The Gp asked him to come in to see him to get the full report , I made sure I was free to go with him.  We were told Dad  had a tumour in the vertebral bodies of his spine. This was likely to be metastatic deposit and because he had waited so long before going to Dr it was a large mass and extensive. I was heartbroken - I had been so strong about Mums illness but I never thought I would have to deal with this too. Dad took the news very well and to be honest I don't think he really understood what the Dr had told him. The Dr had explained things very well but I just think Dad maybe hadn't wanted to hear the news. We talked about the results but I never got the impression that the gravity of it had sunk in with Dad .Its fair to say the tears flowed that night, I thought I would never stop crying ,I just couldn't imagine my life without my Dad, we had been through so much together. I knew I had to be strong for him and not let him see me upset so the next morning normal service was resumed and I reverted back to the eternal organiser , chasing up clinic appointments and CT scan appointments for my Dad and speaking to colleagues about the likely outcome of further imaging. At least if I was prepared for what was coming I could get Dad through it !!!