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.