Bonnie xxxx

The brightest of lights went out on 15th January 2020.

Bonnie, a treasured cousin and a dear friend, I am going to miss you so much. Xxxx

Bonnie – the epitome of strength and fight,
She would never give up, when others might.
Her will, her tenacity were both made of steel,
She was determined to fight, determined to heal.

Bonnie, by name, by nature, by soul,
Her fortitude present when life took its toll.
On her journey, she gathered an Army to empower,
To lift her spirit during the darkest of hours.

Bonnie – her humour was second to none,
If you needed a laugh, she was there, job done.
“Yoga cat Callie… Dale will be laughing all day!”
“It was never that funny!” – She just had to say.

Dale and Kathy, her protectors, maintained high morale,
Defeat…An option Bonnie would never allow.
Isabella and Horatio filled her heart with pride,
She’ll forever watch over them, be there at their side.

Bonnie – the bravest, she was there to inspire,
As Cancer built strength, she fought it with fire.
Superwoman, we love you, you were one of a kind,
You’ll live on in our hearts and forever our minds.

Soph xxxx

Lost.

I am so glad I took the advice of my two children and a lovely Doctor last year and started my blog. In moments of sadness, it helps me to organise my thoughts and anxieties. The last few days have been emotionally challenging and I’ve felt incredibly defeated by everything. My passion for writing is always prevalent during these moments, so here I am.

Last Friday evening’s journey home from work was not the usual reflection of the school day. The Admiral Nurse had phoned me during the day and had left a message on my voicemail to ring her, so I returned her call on the drive home. She was asking how Mum had been lately and she was making suggestions to increase Mum’s daily activities, in a bid to ease pressure on me. Steering the conversation towards how I was feeling, I soon realised it was a welfare call. The tears came. Asking if I’d phoned the counselling number she’d given me, my tears were probably indicative of the fact that I hadn’t. She is such a warm and genuine person, who works tirelessly for families affected by Dementia. During my conversation with her, I realised just how broken I feel right now. Promising her (and myself) that I’d make the call, I thanked her for the chat and then tried to stop the tears before I got home.

As soon as I’d hung up, our Social Worker phoned me to say that Dad had been accepted by the new home that I’d taken him to visit last week. I was given the following Wednesday (tomorrow) as the day to move him. Still wobbly from the previous call, I broke into tears again: Tears of exhaustion, tears of relief and tears of trepidation over the imminent move. I felt relief that my Dad would no longer be in limbo, as he’s aware, to a degree, that he has to move. However, I know that moving him will be so unsettling to an already unsettled brain. Again, I feel so fortunate to have this woman helping with my Dad’s situation. She’s incredibly empathetic and works so hard for our family. I just couldn’t cope with how insurmountable everything felt at that very moment. I sat there for a few minutes to try and gather myself, before going into Mum’s house to pick her up for an appointment with her GP.

Admittedly, I didn’t feel up to discussing Mum’s Dementia that night, but I had little choice. My parents’ GP is great and he was asking Mum lots of questions. He asked me how I was coping with Mum. I was honest. Sadly, Mum doesn’t take much information in these days, so my honesty was falling on deaf ears. Fortunately, the GP gave Mum lots of advice about the need to wear her Home Safety alarm. He asked me if I was getting help from relevant services and he was asking how Dad was coping in the home. Mum was distracted throughout the whole appointment.

I find it increasingly demanding to juggle their complexities. No two cases of Dementia present similarly, and my parents’ could not be any more different. Dad is totally reliant on others to help him. My Mum’s Dementia exacerbates her determination and will, making her an extremely difficult character to cope with.

Yesterday morning, my husband and daughter both knew that I was not up to work, but I have been determined to not have one day off this year. Until now, I had achieved this. I’d been off the entire Autumn term last year, and I was adamant that I would not miss any school this year. As I got to work yesterday, I felt so totally overwhelmed. Normally, I’m able to keep up a facade, but yesterday I was failing miserably. My Line Manager is amazing and incredibly empathetic. I held on to every word she said whilst she was faced with the pathetic Sophster. I feel so lucky to work with such a great team of people. We all seem to be facing challenges of different natures at the same time. Emma, our Line Manager, is amazing and such a support. I felt so guilty not being fit for purpose, but she sent me home to deal with my emotions.

I have cried so many tears over the last two days and have been hard work for my family to deal with. Hattie really astounds me with her wisdom. Twenty-three, but my daughter has such an old head on young shoulders. She’s my Earth Angel. Bugsy has had to endure his trainwreck of a wife when he walks through the door. I’m missing Louis so much, but he rings me everyday.

So, tomorrow, a new home for my Dad. He will be just down the road from my place of work. This gives me comfort. Knowing that my Dad will be in Axminster will definitely help me cope. It will allow me to go and see him after school without the pressure of taking Mum. It has a great reputation and it is a secure and locked home. I’m hoping to wake up tomorrow with renewed optimism. Maybe, on rare occasions, we just have to let the depths of darkness sweep over us, to enjoy easier days ahead and a break in the clouds?

If anyone has taken the time to read this ramble, apologies for its tone. (Man the fuck up Soph). Massive thank you to Emma, for being such a lovely Line Manager. Julie and Sue, thank you for the hugs today xxxxxxxxxx

 

Fighting sadness.

Looking back over the last week, I understand why I feel so completely drained. A week ago today, I had a phone call from the home to say Dad had been missing for half an hour. It was 7:45pm, raining and dark. I immediately went into panic mode. My Dad’s home is set in beautiful surroundings on Hembury Fort hill, but not beautiful at night with a very unwell seventy-eight year old man missing. As Clive and I drove up to the home, the Police helicopter was circling the area. At that point, I went to pieces. As we arrived at the home, a colleague of my Husband’s was there. He was asking me lots of questions. The sniffer dog arrived and Bugsy told me to stay by the home so I didn’t confuse the dog’s scent. It all felt overwhelming for me. I was calling out my Dad’s name. I felt sick to my stomach.

The staff at the home were amazing. The day staff had been called back in to help with the search. Dad had managed to get out of a resident’s ground floor bedroom, through their patio doors. I blame nobody for this. If Dad had been determined to leave, he would have left regardless of extensive measures to keep him there.

As time went on, I repeatedly kept telling myself that this was not how my Dad’s story was going to end. It rendered me utterly helpless.

An hour had passed, then a call came over the Police radio to say that a man fitting Dad’s description had been picked up by two Paramedics. He was walking on the A30. I was trembling to the core. I couldn’t believe he’d been found. When the ambulance arrived at the home, I’d never felt such relief. Dad walked up to me, looked at the Paramedics and said “Aw here she is, here’s my Soph.” I could not stop hugging this little hero of mine.

The Police believed someone had picked him up. However, when they’d realised he wasn’t well they’d dropped him off in Honiton, without alerting the Police. How bloody irresponsible, but I’ll never know who they were. As Dad was sat in the home, surrounded by Hats, Al, Bugs, myself and the staff, he was telling us how he’d fallen in the road a couple of times. To say he was lucky that night, would be an understatement.  He was wrapped in a blanket the Paramedics had given him, and he was eating carrot cake and drinking tea. I knew we had been about half an hour away from the Dartmoor Rescue team being called out. As we drove down the hill towards home, I just could not stop crying.

Louis had paid for us to go away for the night the following day. It was a Silver Wedding gift. I didn’t feel up to travelling to Hampshire in the aftermath of Dad’s disappearance, but knew Bugs and I needed to get away. The whole journey there I was receiving calls from all the relevant services. Then came the call from our Social Worker telling me that the home could no longer keep Dad safe. It completely floored me. Finally, Dad was in a beautiful home, where I knew he was being looked after. However, it’s not a locked home. It has an open door policy. Since Dad arrived at the home, they have had to implement safety measures, but this is not how they advertise their home. I get it. It’s just so sad that he now has to be moved again.

Louis had booked us a night in a lovely hotel in Bournemouth. We drove on to Barton-On-Sea and we parked outside my Grandparents’ former homes. I just felt lost. I wanted to be that carefree child again, with no responsibilities. I always feel I’m home when I’m in Barton. This feeling was overwhelming in this moment. We walked the length of the beach and I felt an emotional wreck. It was so lovely to have quality time with my Bugsy, it’s something we rarely have these days.

This week has been meeting after meeting, phone call after phone call. I feel so burnt out right now. We have had to endure difference of professional opinion regarding Dad’s mental capacity, whereby the Deprivation Of Liberty Safeguard Assessor deemed him to have capacity. Matched with the Psychiatric Doctor’s opinion that he has not got capacity. By Friday, a decision was made that he has a fluctuating mental capacity, therefore a Deprivation Of Liberty Safeguard has been put in place for his best interests.

I must have heard the word “complex” so many times this week. I’m sick of the word. However, Dad’s situation is complex. His Dementia and Biopolar are not a good partnership, with the lines between them becoming increasingly blurry. I’ve been shouting for three weeks that my Dad’s mental health is causing him these episodes. Whilst the services have been arguing it’s his Dementia. Three weeks ago, Dad was banging his head against his bedroom wall in a bid to end his life. He told Hats and I that he couldn’t cope with how his head felt any longer. This was devastating to hear and a clear marker for a mental health episode. Then his disappearance was caused by Dad needing to walk to Seaton to buy “shaving tickets,” again evidencing an episode.

On Friday morning, a familiar voice from Social Services phoned me. She’d been my rock last year when Dad was first taken ill. We’d since been allocated a different person, but equally as lovely. As soon as I heard her voice, I cried. She’s one of those warm, generous people who genuinely care. I miss my Mum’s love and empathy so much, this woman’s call was just what I needed. She told me that all the services had to listen to me, as I’m the one who truly knows what’s going on for Dad. This call lifted me from a dark place on Friday morning. She is in charge of finding homes for me to visit to see if they’ll suit Dad. I know we’re in safe, empathetic hands.

During a meeting this week, it was agreed that Dad needs to get out more to raise his mental health. We’ve not thought we could take him out, until now, because of the upheaval of his recent move. Hattie and I took him for a very blowy walk along the seafront, and then back to our favourite haunt for lunch. It felt amazing having that time with Dad. It’s just a balancing act with Mum. She needs us too, but I cannot take them out together. I’m very aware that Dad’s decline is rapid. He’s so aware of his deterioration. I know we need to raise his mood, before Dementia puts him in a bubble of unawareness. His current awareness destroys me. I fucking hate how my intelligent, life-loving Dad is at the mercy of two evil illnesses. Fighting for him to have some sort of quality of life is my main purpose right now.

Words aren’t enough to express my gratitude for my family. They are my rocks. I have cried so many tears of frustration and grief this week.

I just want to say a massive thank you to everyone who went looking for Dad last Sunday. It’s such a lovely community. I love the people of Honiton. In moments of utter distress, people step up. Thank you from the bottom of my heart. You’re all such treasured and loved friends. Xxxxxxxxxxxxxxx

 

 

 

 

 

Breaking point.

Right now, I feel like my head will explode from the pressure of the situation I find myself in. Sitting here contemplating whether I dissolve into a million tears, open the Baileys or write yet another blog… So here I am. (The tears are coming regardless of my objection). Please forgive me if you feel it’s self-indulgent, or worst still, woe is me. That certainly isn’t my intention. I loathe self-pity: You have a choice to give up or keep fighting, and I will forever choose the latter. Immense frustration is me. Frustration that I feel I am doing the job of so many others.

Yes, I have probably talked about Dad’s history in a previous blog, but it paints a picture of his current situation. Thirty-three years ago, whilst Head of Bradninch school, Dad suffered a breakdown. He was then diagnosed with Bipolar Disorder. He experienced major depression during that difficult time, and also an episode of mania. He didn’t suffer another episode for the next thirty-three years. However, due to the fact that he’d suffered both the depression and the mania, he was put on daily Lithium for life. He had not suffered any more episodes until January this year, post his stroke and Dementia. Anyone who has seen a family member suffer a psychotic episode will be only too aware of the strain it puts on the individual, even more so if that individual is gripped by Dementia. In January, the strain Dad’s mania put on his brain and body was devastating to witness.

My Dad’s breakdown, in 1986, was indicative of the strain he was under, due to the fact that the previous Head would not accept his own retirement. He would frequently turn up on school property to upset Dad… He achieved his goal – twenty-seven years of an amazing teaching career was over for my Dad due to his breakdown.

Dad’s mood, for the past ten days, has continued to take a nose-dive. I have been so anxious about him. On Sunday, his paranoia was in overdrive. Hattie and I knew he was in the throes of a psychotic episode. We both hated saying bye to him as we left the home.

As I was walking into school on Tuesday morning, my Dad’s home told me that they’d had to call the paramedics out during the night, as my Dad was repeatedly banging his head against the wall. This crushed me. It floored me to think that Dad was that broken. It was so hard trying to process this information, whilst trying to keep my role as ‘Mrs V’ going. My lovely Line Manager tried to send me home, but I knew I would go to pieces if I went home. In testing times, we learn where our strength lies. My strength is to keep running, to keep my pace up, because the minute I stop, I know that it will all catch up on me. Question evasion also works for me, I will always deflect a question of ‘how are you?’ Furthermore, children are amazing at lifting spirits, they make me smile. I’m so grateful for my job.

After school, Hats and I went to Mum’s for a meeting about a home safety pendant to wear on her wrist. You’ve really got to celebrate your small victories. I’m so pleased my Mum is now wearing a dementia friendly safety alarm… with very little objection! If anyone has similar concerns about their parents being on their own, £17 per month for this service is an invaluable reassurance. (I’m not on commission! Maybe I should be!)

Once we had sorted Mum’s alarm, Hats and I headed for Dad’s home. It was supper time, but Dad had refused to go downstairs. We took his food up to his room. His pallor made my heart sink. My Dad has always been called the ‘Spanish Gypsy’ due to his olive skin, but now he was grey.  I was so glad to have my Hats with me. It was painful to see my broken Dad. The huge bump on his head was evident. He would not stop holding us both. My former Dad: the exuberant, larger than life character, was now a broken, scared little man. It broke my absolute heart. The intensity of Dad’s paranoia was palpable. I asked him if he could remember banging his head. I wasn’t prepared for his reply. He said that he could remember it vividly and “wanted life to be finished.” I knew, at this point, that Dementia had definitely taken a back seat and Dad was suffering the most horrendous episode. Sitting on the bed, in Dad’s room, with my daughter, counselling my Dad, was the hardest experience. I was having to be strong for my Dad, but inside my heart was breaking.

After a long conversation with my exhausted Dad, Hats and I went down to speak to the staff and explain just how unwell he was. I appreciate it’s difficult for a home for Dementia to distinguish between that and mental health. I can appreciate this. However, the evidence sadly spoke for itself. My Dad was suicidal. They agreed to ring me during the night, if his mood escalated. Once again, I came home and went to pieces.

On Monday, I pushed for a blood test that was long overdue to check Dad’s Lithium levels. The results came back today and were dangerously low. It then transpired that during Dad’s move from respite to his home, he had been having a third less daily dose for almost five weeks. I was furious! Yes, you have to allow for human error, but my Dad could have very easily taken his own life on Monday night due to incorrect amounts of medication. My Dad, both physically and mentally, cannot afford this horrendous episode, but that doesn’t alter the fact that he’s having one.

When I spoke to Dad’s Mental Health Practitioner, she was speechless. She’s going to visit him tomorrow to assess him. She knows, as well as I do, that a return to his regular dose, from today, is not going to stable his mood overnight. I’m so glad she’s on the same page as me.

I would always argue that someone who is in a bubble of Dementia denial, as is my Mum, is more fortunate than someone who is aware of their deterioration. I cannot cope with Dad’s awareness. It utterly floors me. I just want Dad to become blissfully unaware of his brain’s demise. His awareness is heartbreaking.

As Hats and I were sat counselling my poor Dad last night, I was so proud of my daughter. Her Grandad used to read her books, build camps with her, play games, take her to the beach, make her laugh. She is now his support. I know he would be so proud of her strength, maturity and love.

I don’t have any humour to add to this blog tonight, sorry. I just can’t see the funny in life right now.

Thank you so much, Tracy, for the chat this morning. I literally have the best, most supportive work colleagues. xxxxxxx

And thank you, Sue, for the lovely surprise when I got home. It made my day.  Xxxxxxx

 

 

Overwhelmed with grief.

imageimageimageOn this journey with my parents’ Dementia, I’m really learning to ride the waves of emotions. I am the first person to laugh the loudest, but I’m also the first person to cry when sadness overwhelms me.

This week I’ve felt completely beaten by this situation. I’m feeling bereft of all that is familiar to me. Whenever I hold my Dad’s hand, I look at his beautiful, olive skin and see a lost soul staring back at me. I’ve been losing more and more of my Dad each time I see him. I crave to hear him he say “Love you kid.” I miss all the familiar about him. He has forever been: the voice of reason, the joker of the pack, the life and soul, the philosopher, the non-conformist, the most intelligent family member, the greatest judge of character, the most selfless soul. I could go on… Now, he looks at me, desperate for me to say the right thing to calm his soul. I don’t know what he wants to hear, I don’t think he knows either.

Right now, Dad is so unwell. He is so troubled and gripped by confusion and the worst paranoia. His brain is firing in so many different directions. His state of mind is not good at all. Yesterday, Hats, Bugs and I took Mum to visit him. This is always difficult to police. Mum, as usual, was fussing around him. My Dad could not cope with her at all. It is like a switch for my Mum… The minute she’s in Dad’s company, her whole persona changes. She can be the calmest person on the way there, but the moment she sees Dad, her energy levels soar. As we were sat in his lovely room, Mum was making unnecessary adjustments to Dad’s wardrobe, re-organising his clothes and charging about. My Dad just cannot cope with this, he is exhausted and he finds her energy difficult to cope with. Fifty-six years of marriage and now this horrendous disease means they cannot be in each other’s company for too long, as it’s detrimental to their well-being.

Another thing my Mum will do is try to correct Dad when he’s confused. For instance, yesterday he felt sure he’d opened a school during the night, and a lot of the staff had been struck by illness, so he had to run the school without any help. This was met with Mum’s “Rubbish, Derek!” This only served to exacerbate Dad’s confusion, as the moment felt real to him. I would always argue that it is kinder to the person with Dementia to agree with them, and ask them questions about it. My former Mum would have had the patience of a saint for this illness.

Yesterday, I felt pretty unwell with it all, both physically and mentally. My body and mind felt exhausted in equal amounts. During these moments, I have all the patience in the world for my Dad, the same cannot be said with regard to my Mum. When she’s upsetting Dad, I cannot help but feel defensive. When she’s not around Dad, I find her much easier to cope with. Last night, as I reflected on my time during the day with Mum, I just could not stop the tears.

Guilt is such an unwelcome host, yet is prevalent in my life every day. My Hattie has been such a support to me this weekend, but she’s always my support. She said earlier, “Mum, you will never think you do enough, even when we all know that you go above and beyond.” It does not matter what people say, I’m still stuck with the feeling that I could be doing more. Guilt is an extremely destructive emotion, it prevents you from liking and accepting yourself. As a Carer to my parents, I’ve been offered counselling to help me cope with my role. I know, for my family’s sake, I need to take advantage of this and accept the help. Devon Carers once offered me a ‘buddy system’ whereby you pair up with someone else going through a similar experience with Dementia. My family all stopped me from taking this offer up, as they knew it would be totally counterproductive. Unfortunately, I’m a human sponge, I know that I’d end up soaking up all their troubles too and not benefitting from it whatsoever. However, I’m definitely going to accept the counselling. If it can help with the burden of guilt, it has got to be worth a try.

Feeling emotionally wobbly today, I went to see Dad this morning, without Mum. Hats came too. My Dad was incredibly low and fragile. It was a painful visit. However, it is always much easier without Mum being there. The three of us sat in the dining room and looked out over the beautiful gardens. A lot of the time we didn’t speak. As he sat there, he’d occasionally reach out and hold Hats’ hand, then he’d grabbed mine. During these moments, I hope, at the very least, his spirit is comforted by our silent presence.

Grieving for someone whilst they’re still living is such a heartbreaking process. I’ve often asked myself if it would have been easier for Dad to not have survived that horrendous stroke last July. I don’t know the answer to that. Ever since, he has suffered a rapid decline in his mental health, gripped by Dementia. Selfishly, I know I want to be able to cuddle my Dad for as long as is humanly possible. I just wish his brain would stop being cruel, plaguing him with confusion and anxieties. It is totally heartbreaking to see.

After seeing Dad, Hats and I picked up Mum and took her to our favourite place in town for lunch. My relationship with Mum is much better when I’m indulging her and not policing her behaviour on a visit to see Dad. My heart also breaks for my Mum’s situation. Yes, I’ve had more years to accept her deterioration. Yes, her Dementia is not as rapidly destroying her as Dad’s is. However, I would always argue that this makes her extremely vulnerable in the big world. I know that her living arrangement is a ticking time bomb. I worry each day about her being on her own. However, her stubbornness is now proving to be her strength.

Regardless of how old we become, we’re still our parents’ children. I really have found this transition from child, to parent of my parents so difficult. For fear of repeating myself, I grieve for my familiar parents so much. They were always there for me, even when I tested their patience. They were always unconditional with their love. There was never a time when they weren’t they for me. It is only right that I put my heart and soul into their hour of need. I read a quote that said your time should be “quality, not quantity.” I’m trying my best to live this. However, I constantly feel that I need to make up for the absence of Nicole’s presence in my parents’ life. I know this needs addressing. It’s her guilt to live with, not mine.

I am trying my best to keep humour in my life. My Louis is busy studying hard for back to back exams tomorrow and Tuesday. I know he’s eternally grateful for the fact that he inherited his Dad’s Maths prowess. (The kids at school know not to ask ‘Mrs V’ for help with their Maths! I wear that badge with honour!) I keep reminding Lou that he works hard to pay for my nursing home bills one day….. He repeatedly reminds me that he’s going to put me in a tent on the lawn of a home, and he’ll have a private arrangement with them, so I can use their ‘facilities’ when needed!!!! Apparently, it will be like an everyday Glastonbury for me… I’m not sold!!

 

 

 

 

 

 

 

Bulldozed by emotions.

I feel I repeat myself in my blogs when I describe the ‘roller coaster’ of emotions. However, roller coaster is the most fitting of descriptions. This week has certainly been full of highs, and most definitely lows.

Bugs and I celebrated our Silver Anniversary on Tuesday. We’ve been together for thirty-three years. This man has stood by me since we were twelve years old. That, in itself, is a bloody achievement!!! Yes, we had a blip in 2011, which I’ve mentioned in an earlier blog. Yes, I still feel the guilt over this blip. Yes, I will probably own this guilt until my last breath. However, my Bugsy never gave up on me. He’s forever the calming yang to my crazy yin. Bugsy is, without doubt, my rock. Over the years, I’ve watched him grow from boy to man… He has watched me attempt to grow! Haha!

My brother, Sacha, was born on my Grandpa R’s birthday, 25th September 1971. He was the best birthday present my Grandpa could have been given. Tragically, he was born a very poorly boy. He had sarcoma, and this cancer eventually took his life. I always find his birthday so difficult to deal with, as I just cannot cope with the pain I feel for my parents on that day. When Bugs and I were eighteen, we got engaged on Sacha’s birthday and we married two years later on the 24th September. We then celebrated my Grandpa R’s 90th birthday the day after. It was such a lovely weekend, and my Grandpa loved both the celebrations. It was so important for me to get married around Sacha’s birthday.

Each year, on his special day, I’ve always taken flowers to my parents. This year, hurt so much as I know my parents’ poor brains did not register the day. My brother is very prevalent in my Dad’s thoughts, but he is often stuck in the time where he suffered the devastation of losing his only son. Many times I have sat with him and he has told me how he has just lost his “little boy.” He appears, during these times, to be locked in the time when he had lost Sacha. Dementia is so unbelievably cruel: to lose your child is the worst pain imaginable, but to relive that feeling over and over again is just beyond cruel. The pain in Dad’s eyes, during these moments, is just unbearable to witness. It breaks me.

Mum and I had a meeting with the Dementia Nurse on Thursday. Mum was so calm. I have come to realise that when my Mum is calm, I find it harder to cope with her, I know this is because I can see sadness in her eyes. Sadness that she’s on her own, without Dad by her side. I know I’d much rather have her difficult and argumentative side over this vulnerability. When she’s feisty and awkward, I see this as strength. I think that’s why I find it easier to cope with. When she’s calm and subdued, it breaks my heart.

Ultimately, I just want both my parents’ previous, familiar characters back… Dementia, I would argue that you are the worst sunshine stealer in the world. You steal someone’s amazing soul, but leave the physical body as it was. Dementia, I truly despise you.

Yesterday, Bugsy and I had a meeting at Dad’s home with the Manager and Dad’s Mental Health Practitioner. My Dad has not had a good week. His mood is very low. He hasn’t been sleeping well at night. Mum’s Enablers take her to visit Dad whilst I’m at work. I’m so grateful for this, as it eases my guilt for having to go to work and leave her. Unfortunately, I’ve now had to stop them taking her, as Dad is more low once she has visited him. Each time my Mum visits Dad, she tells him she wants him home. She also tells him how expensive the bills for his home are. This is now learnt behaviour for Mum. She knows that as soon as she is there, she must apply pressure to Dad about coming home. When I take her, I can talk over her or tell her off. Unfortunately, her Enablers are put in an awkward position, so I’ve had to ask them not to take her. Cowardly, I’ve not yet told Mum that they will not be taking her, with effect from next week. I’m going to have to brave it this weekend. Brave is something I am just not feeling right now. Crawling under a rock and hiding from my responsibilities would be my place of choice.

With the vulnerability and complexities of my parents’ situation, they have had to put an emergency DoLs (Deprivation of Liberty safeguard) in place. As it stands, if Mum wanted to, she could actually remove Dad from the home. Now, with the emergency DoLs, she cannot. We’ve got a multi-agency meeting during the next few weeks. The Manager of the home said that this meeting will be so important for my guilt. She said that the decision will be taken off my shoulders. Mum will hear, during this meeting, that the decision to put Dad in the home was for his “best interests.” Right now, I feel sick with guilt: I’ve made Dad safe, but made Mum sad.

After the meeting yesterday, Bugs and I sat with Dad. His mood was very low. He looked so lost. I felt exhausted. I just sat beside Dad and let Bugs hold the conservation. My poor Dad looked so tired: Tired of a confused brain, tired of feeling so lost, tired of being at the mercy of this debilitating disease.

I have felt ridiculously emotional this week. Have cried so many tears. I’m hoping the tears are acceptance – Who knows? I’m so unbelievably grateful for my job. This time last year, I was contemplating giving up my job to be my parents’ Carer. By last December, I knew that this was not the right decision. I had lost my identity. I was no longer Soph, the daughter, I was Soph, the Carer. My job allows me to be me. Working with children is my niche. On days where I feel utterly deflated and beaten, my job really does energise me. So grateful that I listened to my family late last year and made the right decision to return to work. I’ve lost so much, during these last fourteen months, I can’t afford to lose my own identity.

This blog is a rather depressing one, sorry. However, once again, where there’s life, there’s always humour. On Mum’s birthday last week, she came around for a birthday dinner. I normally bake a cake, but I just hadn’t had the time, so I bought a round of iced muffins. Mum is Diabetic, type two. She’ll always say she’ll “have a taste.” This taste is normally about three cakes!! On this occasion, she didn’t disappoint… She ate her first muffin. She was offered a second… “No, I mustn’t.” Lou and I then did our normal, and scraped the buttercream off two others (icing is the best part!). My Mum, by the end of it, had eaten three… Two of which had been crudely destroyed by Louis and I! Marvellous!!

 

 

 

 

 

 

 

 

 

 

 

 

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