.....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 !!!

What Next ?

I explained the whole situation to Dad when I arrived home and he was dumbstruck . We discussed what we could do next and agreed that we had no other options but to find a new care home for Mum , one with nursing care this time.
We arrived to visit mum- she had been moved to a transition ward, in light of the fact that she was fit for home but didn't have anywhere to go. She was in effect a bed blocker - one of the statistics we hear about wasting hospital beds and draining NHS resources. She was however a bed blocker due to the failing in her care so I wanted some answers and I wasn't in the mood to be fobbed off.
The transition ward was in an unused hospital block , all the other wards were empty it was a miserable place , the type of place people are sent to be forgotten about !
I had requested to see the ward sister , she wasn't aware of Mums' homeless status or indeed her pressure sore and was a bit shocked - no doubt wondering how long she was going to be taking up a bed. She called for the nursing lead for elderly care to come and see me. When she arrived we headed off along with Neil ( my husband ) and my Dad to discuss the situation. I was careful that this wasn't going to be addressed in front of Mum as I didn't want her upset.
The head of nursing asked me what I wanted with regard to Mum's care and I explained in quite clear concise terms that I wanted a full explanation of how Mum had managed to develop an un-gradable pressure injury while she was on one of her wards , how this had happened in the boundaries of the clinical trial she was enrolled, and more importantly why we had not been made aware of the situation until the eleventh hour. I don't think she had expected me to have all my ducks in row - but those who know me know that when I am backed into a corner I am at my best, I don't like confrontation but I wasn't going to shy aware from letting her know that I expected answers and accountability . She was under no illusion about the fact that I wasn't going to just go away and we agreed a time scale for discussing things further there and then. I took her mobile and email address and assured her I would follow up on things. My Dad didn't say much in the meeting he was still shocked about Mum's situation so I had no choice but to take the reins myself and fight Mum's corner. After the meeting Neil told me he was so proud of me, I had shocked him with my command of the meeting - he said I had been so strong  " you kicked ass " he said and it made me chuckle. My health care background had stood me in good stead to ask her the right questions and quote the right policies and procedures this was something she hadn't expected.

Over the weekend Dad and I viewed seven nursing homes ! we were shattered by it all , but we liked four , two of these had vacancies and agreed to visit mum to assess her. We breather a small sigh of relief - no allowing our hopes to rise , we had been here before.

Mum was offered a place at one of the homes later that week and we felt comfortable with this. I felt a little glow inside when they offered her place , the nurse who assessed her had given Mum her lunch while assessing her as it had just been left on her table in the ward out of her reach. I felt this gave us an insight into the level of care Mum could expect in their facility and this was in excess of that she was currently getting. Arrangements were made and Mum was moved in by the end of the week. Mum's safety was paramount to us and we certainly didn't feel the hospital was a safe environment in light of our experiences to that point.
Mum settled well and we enjoyed visiting her over the weekend, Dad visited while I was at work and he was finally starting to relax with the situation.
Social services then summoned me to a meeting to assess all mums financial affairs with regard to her care home fees. They expected all her financial affairs to be evidenced , I even had to get the deeds to her home. I had everything ready though as I had always expected that mum may need some form of care at some point. My solicitor who set up my lasting power of attorney had been very informative about the process so I was fully prepared. The meeting was short and care contributions were agreed.
Everything was going in the right direction finally but we couldn't relax , we were learning  the hard way nothing about Dementia was easy.

It never rains it aways pours !

So after settling mum into her new home on the wednesday I finally began to relax and tentatively hoped we could start to enjoy quality family time - something that had been sorely missed for a good long while. Relationships with friends had suffered, and Neil and I had been at breaking point more times than I care to remember. Now I hoped we could start to try and rebuild things. Dad visited mum on the Thursday and Friday and seemed as happy as he could be- yes he hated the whole situation of having her in care but he knew now that it was best for both of them. He felt she was well looked after and he had started to relax a little too. Since mum had been in care we had been enjoying the father / daughter relationship again - talking about mundane things rather than me lecturing him about mum, going shopping together,things we had bee unable do for several years.  We were getting back to the people we used to be before life took over.
Then came that late night phone call the one we all dread - 11.45pm and the care home phoned me. Mum had fallen in her room and pulled a wardrobe on herself. She was on her way to hospital. The care home was short staffed so no one was going with her. I was shocked that they would send her alone
I called Dad explained the situation and he came round to wait for more news. I called the hospital she was in A&E - it was Friday night ,however the nurse I spoke to had things in hand mum was in a cubicle they were aware of her dementia and she was been monitored closely. They would ring with news once they had it. To cut a long start short mum was admitted to a "care for the elderly ward " a true contradiction in terms as it turned out.
We visited every day and mum was reasonably settled, the ward was chaotic and the staff very variable. A couple of days into her stay I managed to catch the Dr a newly qualified House officer. He was a little unprepared for my depth of questions but I had his undivided attention and I intended to get as much information as I could from him. He told me x rays had been performed on mums pelvis and there was a query about a pelvic fracture but the X-rays needed to be reviewed - he was completely blind sided when I told him I would like to view the X-rays !  He agreed and I proceeded to explain that mum had two fractures through her right pubic rami. I Noticed the X-rays were several days old so why were they not reviewed ?? he could not answer this one. With a little help from special friends the X-rays were reviewed next day and mum was confirmed as having a broken right pubic rami in two places.
Now mum was on bed rest for 6 weeks to ensure the rami could heel and she was visited by a consultant nurse who was running a clinical trail into mattress choices and the development of pressure sores. The pros and cons of the trail were discussed and we agreed to mum going on this trail- we felt it meant she would be monitored closely something we were not sure was happening to any degree currently.
Visiting mum in hospital was very miserable for us all - her care was substandard to say the least. I am a health care professional so I appreciate the pressure of staffing levels and the demands of the job etc but some of the staff on the ward were much more interested with socialising and discussing their life than caring. Diners were left on mums table - even though she was unable to feed herself while staff sat at the desk checking their social media. We had a visiting rota which was arranged around meal times so we could ffed mum - it was  the only way we could be sure she was eating at all. I know feeding patients isn't a nursing role but its a basic duty of care and their has to be some provision for these kinds of needs on a ward of this type with our now ageing population. Three weeks later mum was ready for discharge back to the care home they had everything in place and were ready to have her on bed rest. Then Friday as I was leaving work came another horrible call - mum had an un-gradable pressure sore and she could be returned to her care home as they had no nursing facilities - she was now in limbo with no home to go to ! I was stunned, I drove home from work in shock. How had this happened she was on a clinical trail with regular monitoring ? what did we do now ? Mum was homeless we were back at the beginning.