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.