Bureaucracy failing the individual’s wishes.

This week has been the biggest emotional roller coaster to date. I’ve lived genuine highs with moments of triumph and I’ve lived moments of ugly defeat. Last night, I sat and questioned why this journey is so bloody difficult…. This was when I knew I needed to take stock and kick my arse. I’m never a person who asks why me? Why our family? Ordinarily, I say why shouldn’t it be me? Why shouldn’t it be our family? We’re given a specific journey for a reason. I truly believe my family’s current journey has a purpose. During these last thirteen months, I have become so bloody protective and passionate about Dementia. Still today there is so much ignorance surrounding this devastating illness. Last night, as I was having a pathetic meltdown, I reminded myself who’s daughter I am. My parents were fighters, who never allowed self-pity to enter their world. So grateful for all they taught me. Their life lessons are keeping my spirit up right now.

On Wednesday, I rang the home of our choice and spoke to the Owner/Manager. Instantly, I was impressed. Impressed by her straight talking (my kind of person). She told me that she had a room available for my Dad from Tuesday 3rd September…. Music to my ears! (I’m not mentioning the name of the home at this point, as I’m a big believer in tempting fate. When my Dad is finally in the home, then I’ll shout about it). This amazing woman asked me if she could go out to my Dad’s current home that afternoon and meet him. I was again impressed at her approach and swiftness to get things moving. (Wondered if she was also an Aries?! Haha!). Knowing that she was going to visit my Dad later that day, Hattie and I then went to Dad’s home to advise the Deputy Manager and tell Dad.

My Dad’s current home has provided emergency respite for Dad and has allowed me to enjoy a family holiday to Greece. I’m so grateful for this. It got him away from a vulnerable, volatile home situation. The home has some truly incredible staff who have generous hearts. Unfortunately, it isn’t the home I see my Dad spending his days. My Dad is not happy there. He openly says how he misses the outdoors. He has no garden there. This is massive for my Dad. With these couple weeks of sunshine, it has absolutely destroyed me to see my Dad staring out of the window, desperately needing the warmth of late summer. My Dad and I are two of the same person. I would go mad without my outside freedom. It’s destroying me to see his restricted life. Again, I’m not criticising the current home, hugely grateful for the respite it has provided, but its town location makes it a bad choice for my outdoors-loving Dad.

After visiting my Dad, Hats and I went to our favourite Honiton haunt, ‘Toast’, for lunch to celebrate Dad’s imminent move. I was sittting there with my daughter/best friend reflecting on the past few turbulent days. Social Services phoned me twice during our lunch, asking about my Dad’s self-funding etc. (I should have guessed then that there was a storm brewing). After our lunch, we were just heading home to walk our Evie, when the phone went again. Two social workers were on their way to Dad’s home to try and establish mental capacity in terms of Dad’s imminent move. Cue my Baby Girl saying “Mum, drive to that fucking home, we need to support Dandan.” As we arrived, the two women were just signing in. I had to quickly explain to my poor Dad that this was nothing to do with his new home. He was expecting the Owner of his new home to visit him. Talk about confusing the confused!!

We had the meeting in Dad’s room. Hats and I were allowed to be present. As my daughter and I were sat on Dad’s bed listening, we felt so proud of him. He spoke with clarity, he spoke with insight and he spoke with intelligence. During one moment of this hour long meeting, my Dad smiled and said “I’m enjoying this!” Bless him, he was centre spot and he had the undivided attention of the four women in the room! My former Dad was always the centre of attention. He would captivate any audience with his humour. As soon as Dad had arrived at any social gathering, that’s when the party truly started! I saw a glimpse of my former Dad and it felt bloody amazing! He clearly stated that he did not want to return home to Mum. He clearly stated that he felt “imprisoned” in his current home. He clearly stated that he needed to be surrounded by fields and gardens. Hat and I sat there in silence, knowing my Dad had won the day. There was absolutely no question whether or not my Dad had the mental capacity to decide on a move. The evidence spoke for itself.

The Owner of the new home was now waiting downstairs to speak to Dad, so I left the meeting to go and introduce myself and explain about the social workers’ visit. She was as lovely in person as she was on the telephone. She was talking to one of the other residents when I went down to see her. She was so warm with this little lady. It was a touching moment.

After the meeting, the two social workers were unsure if Dad had the capacity to agree to a move!!! I was utterly speechless. He had had incredible insight during that meeting. What more did they bloody need????!

Last September, following Dad’s stroke in July, my parents agreed to appoint my hubby and I as Power of Attorney for their finances. Unfortunately, my Mum refused to pay the extra for health and welfare. To this day, I do not know how I let this go! I’m a head-strong person who finds it difficult to give in, yet I allowed Mum this and reluctantly respected her decision. This has since bitten me on the bum over and over again! With two parents with a diagnosis of Dementia, Power of Attorney for finance is pretty irrelevant. With POA for health and welfare, I would be able to be the “decision maker” for Dad’s new home. Without it, capacity has to be established. Please, please, anybody reading this, contemplating appointing someone to be their Power of Attorney… don’t just think, act on it!! You’re up shit creek without it!! My Mum was quibbling over an extra £150 last September, when the solicitor’s fee was already huge. What’s £150 when it’s allowing your loved ones to make important decisions on your behalf? Without it, you have to rely on professionals to be your decision makers… These people do not know you, so how can they act on your best interests?

Wednesday night, I felt defeated once again. I knew I had another day to wait before Social Services would be paying Dad a second visit to try and ascertain whether, or not, he was able to decide on a new home. I’m not a patient person, I need everything done yesterday. So Wednesday night was a tough call.

Yesterday, one of the women from Wednesday’s visit returned to meet Dad at the home. My hubby and I were both present for the meeting. We were sat in the dining room of the home. I put Dad at the top of the table and the three of us sat to his right. As the woman was asking him questions, he looked so isolated at the top, so I got up and sat bedside him. Again, he spoke with clarity. He made us laugh a few times. At one point he said “Soph is very different to me and Clive. We’re very private people and she’s extremely open!” This is certainly true of my husband! You will not meet a more private person. He literally is my opposite! It is so difficult for my hubby to accept my need to shout about this experience. His attitude is ‘What business is it of anyone but our’s?’ This is his opinion. Mine is different. I dream of becoming an Author one day. Dementia would be my subject of choice. I think if I was not able to speak about it, I would quite possibly go mad! My Dad, on the other hand, was always an open person. A larger than life character. Sadly, this observation of himself was on the new man he is, not his former self.

After an hour long chat, the woman established that Dad had the mental capacity to choose where he wanted to live. Yippee!!!! Bugsy and I were overjoyed to think Dad would be in his home of choice on Tuesday! Absolutely overjoyed!

The woman then arranged to meet Bugs and I back at our house to do paperwork regarding finances etc. Hats was at home, so the three of us were able to talk to this woman. The meeting lasted three hours. I have to say, she is an incredible person. I think she got to know our family really well during that time. I’m so grateful that we have someone representing us who is human! I’ve met so many professionals who just seem to work by textbook. This doesn’t cut it with me. A human approach allows empathy. Without empathy, your vision is focussed on the ticking of boxes and not the individual’s voice. This woman had empathy and she could see how important my Dad’s move was to us. So grateful that she is now our ‘Go-to’.

After the three hours of form filling and chat, she left to go back to the office. I then started to jump around the house, celebrating our victory. Hats and Bugsy sat there eating their late lunch, staring at the twat before them! It had been a long day and they were both tired and hungry!  I felt so happy and relieved. No sooner had I text Louis and my In-laws to tell them the good news, the phone went. It was our lovely woman from social services. I knew she was dreading what she was about to tell me.

When Dad escaped from the home during our holiday, the home had applied for a DoLs (Deprivation of Liberty Safeguard). This was not known until yesterday afternoon. I understand why the DoLS was applied for; it gives the home more power to keep Dad safe. It protects the home. It protects Dad (in theory). But it’s now a huge spanner in the works with regard to Dad’s move. It all has to go to to panel now next Friday. In the meantime, my Dad is, in his words, “imprisoned.” As I’m looking out at the sunshine on this Saturday morning, I know that my Dad will probably be doing the same. Difference being that I will enjoy this sunshine at some point today, my Dad won’t.

I am back to work on Tuesday. Time really is my enemy. I wanted Dad settled in his new home by the time I returned to school. Bureaucratic nonsense is preventing this from happening. So tired today. So defeated. However, once I go and visit my Dad again this morning, I will regain my momentum to keep the beat.

Thank you to everyone who supports us. We have the most incredible friends xxxxxx My advice to anyone on a similar journey to us is to never let the system beat them. Love conquers all. Every time xxxxxxxx








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