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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In addition to my earlier blog…

I’ve just realised I’ve repeated myself from a previous blog regarding that horrible Thursday, mid-August. I’m going to excuse myself for this, due to the fact that the day had a huge impact on my life.

My blog, my rules haha! I do not have Dementia….. Yet! My memory remains intact… Less can be said for my sanity 😉 xxxxx

Emotional turmoil.

During these last thirteen months, I feel that I’ve felt every emotion possible. To say that double whammy Dementia has shaken my world, would be an understatement. Two parents with Dementia has, I believe, made me a stronger person unwilling to accept injustice. There is nothing just about Dementia. However, I’m allowing this double whammy to make me shout about this horrendous life changer. I don’t write these blogs to elicit a response. As I’ve repeatedly said, these blogs are cathartic… It’s either a blog or the gin! Haha…

When we broke up for the six weeks school holidays, I felt so excited about having that time off. I planned to see friends I’d not been able to catch up with for ages. With one week left before a school return, I know I’ve not done hardly any of the things I’d planned to do. My parents take up so much of my time. However, I certainly don’t begrudge this, I feel so lucky to be their daughter. They’ve been the most amazing parents… I certainly would not have found raising me easy!

With a ten day holiday to Halkidiki booked for mid-August, I was feeling so apprehensive about leaving my parents. I knew I had Louis and his girlfriend, Rosie, around, plus my incredible In-laws, but I really didn’t believe I was strong enough to leave this situation behind me and head for the Grecian sunshine. Talk about deja vu! … This time, last year, I didn’t think I was going to make the family holiday to Crete. It was only the day before the five of us were due to fly, did I then decide I had to go. Last year I was so glad I’d made the holiday. This year, I feel exactly the same. Although a ten day respite felt a tall order, I definitely feel the benefit of having that break. Swimming in the sea and the gorgeous Greek warmth allowed me to have eight hour sleeps! For anyone who suffers from the dreaded insomnia; Waking up to the realisation that you’ve slept eight hours, is similar to a child waking up on Christmas morning!! (Makes me even more intent on opening a cat sanctuary on a remote Greek island one day!!).

The situation between my Mum and Dad had really escalated this summer. My Mum’s energy had reached new heights, whilst my Dad’s energy levels depleted rapidly. Cue my Dad’s request for me to arrange Day Care for him. This was met with Mum’s refusal and anger. She finally agreed to let me take him to The Court, in Rockbeare, twice a week. (I agreed, knowing that I’d been gradually building it up to five days per week).

The day before his first Day Care was due to start, I’d taken my parents to town. Mum had been in a very argumentative mood and was extremely pushy. As we got back to the house, my poor Dad looked exhausted. He looked at me and said “Soph, what if I don’t want to come home from The Court tomorrow?” I cannot erase the event that followed this comment from my head. Time’s a healer? Let’s hope so. My Mum slapped Dad across the chin, then again. She was shouting at him, telling him he was being “ridiculous!” And “Of course you’ll be coming home!” I was so angry with Dementia, I was defeated. I shouted at Mum and told her that under no circumstances must she ever hit my Dad. Dad said “This happens a lot, Soph.” My absolute heart broke this sunny Thursday in August. My two parents, 56 years of marriage, now unable to live together. I can honestly say, during my childhood, my parents never shouted at each other. They must have had disagreements (find me a marriage without the odd difference of opinion!!), but I was never privy to them. After pacifying the situation and feeling that Dad was safe to be left with Mum, I got in the car and drove home in tears. I knew that the time had come to make decisions.

After dropping Dad to The Court the next morning, I intended to ring Mental Health and Social Services and shout for help. As my Bugsy and I were driving my Dad to the home, Dad spoke with such clarity. He said he couldn’t live with my Mum any longer. Guilt is my champion emotion. Dad’s clarity on this day was easing this guilt. He was making the decision for himself. As we arrived at The Court, Hollie, a Manager, was there. Dad fell into her arms and cried. I fell to pieces. I was so relieved that my Bugsy had started his three weeks of annual leave that day. I do not know what I’d have done without my hubby’s support. My Dad’s tears were tears of relief that he was safe. Safe from the evils of Dementia. Dementia, I fucking despise the devastation you cause.

That Friday, I spent the entire day on the phone to Mental Health and Social Services. The Court unfortunately didn’t have a spare room for Dad, but they kindly stalled a new resident moving in until that Sunday. This allowed Dad to stay at The Court for two nights, whilst Social Services sorted emergency respite. With our holiday to Greece being on that Sunday, time was against us. By Friday night, Social Services had sorted a room for Dad in a Honiton Care Home. I had so much support that day from the relevant services, they were all there for us in our moment of crisis. So grateful. Mum was obviously not at all happy that Dad wasn’t coming home, but it was sold to her that he was only going to be in a home for the duration of my holiday. (You’ve got to pick your battles!).

With all this going on, I felt it impossible to leave it and bugger off to Greece!! The Social Worker told me that I needed this holiday and that Dad was now safe. I knew that if I didn’t go, my hubby, my daughter and her partner, Al, would not have gone without me. They all deserved this holiday. I’m so glad I did go, although I felt so guilty on the journey to Stanstead.

Whilst we were away, Lou, Rosie, and my In-Laws were incredible. They held the fort for me, unbelievably grateful to all of them. Unfortunately, my Dad managed to escape from the Care Home, and police officers eventually found him and took him back. This was a scary time for Lou and my In-Laws. They kept it all from us until we got home. They knew, with me being away, it would have done me no good to know he was missing. They’d had such a difficult time. I felt so guilty when I got back. I wonder how many times I use the word ‘guilt’ in my blogs??! … Bloody hate that energy zapper!

My Dad is still in the same home, but unfortunately, given its town location, it’s too accessible for my Mum. She is visiting him most days and the Carers cannot obviously keep tabs on them the whole time. At the moment, I’m off work so it’s not too much of an issue, as I can accompany Mum to see Dad. However, with a return to school next week, the pressure is on for me to find a new home away from Honiton. I’m on it. ‘Soph, should you choose to accept this mission, you have the next seven days to orchestrate a move for your Dad!’…

One thing that irritates me beyond belief is ignorance towards Dementia. People will often comment on ‘bad behaviour.’ A person with Dementia is not playing up, they’re mentally ill and unable to control their actions. My familiar Mum would never have hit my Dad! I get so upset with people’s lack of understanding regarding Dementia. These aren’t naughty people, these are people cruelly struck by a disease that slowly removes their dignity, their spirit and their personality. My Mum’s Dementia makes her an exhausting pain in the arse at times. However, it’s the disease, not my Mum. She behaves like a spoilt child, due to the disease. She doesn’t listen, due to the disease. She grabs and hurts my arm, due to the disease. My familiar Mum was a gentle, loving and empathetic spirit. This disease is unbelievably cruel. Dementia affects so many families, but there is still so much ignorance surrounding it.

When I was about eight years old, my Grandpa (Mum’s Dad) was suffering from Dementia. It was a cold evening at their bungalow in Barton-On-Sea. Suddenly, we looked out of the sun lounge to see my Grandpa hoovering the garden in just a vest and pants. I remember laughing my head off. I found it hilarious. I can clearly remember my Mum crying and telling me to stop laughing. I look back at this memory and think how sad that moment must have been. I was seeing it through the eyes of innocence. Now, it makes me feel sad. That is not to say you cannot allow yourself some smiles. There are plenty of moments that I cry, but then there are plenty moments I can hear my Dad telling me to laugh. I’m so grateful I inherited his love of life and his sense of humour. It’s seeing me through some shitty times right now.

I need to thank Lynsey. She visits my parents’ house each week to tidy it up. She’s amazing and has quickly become an important person in our lives. Her chats with my Mum are so helpful, as Mum has a tendency to listen to her more than her daughter and family! Lynsey, you’re a star.  Xxxxxxx

When I told my sister I chose for myself, me Julie, the other day about my Dad’s ‘Great Escape!’ She said “Soph, that is so you!!” Did make me laugh! If anyone would check out the security of a place, it would have to be one of my family!! Haha xxxxxxxxx

 

 

 

 

 

 

 

 

 

 

DVLA – Still, the struggle is real!

The Grecian sun is lifting my spirit…. Plus my Hatpat… As she was sat beside a woman on the plane, the lady asked her where she was headed?… Hats’ reply… “We’re going to Greece!” No shit, Sherlock!!!! I’ve not had a good belly laugh for a while and it felt amazing! (Happy to report that Hats remained on the plane for the entire flight and got off at the first stop of Thessaloniki!!!).

 

Dear DVLA, you’ve got me all wrong,

Dashboard dusting? I was changing the song!

Did you expect me to take the hard shoulder?

Why should I? Please say… Is this ’cause I’m older?

 

Dear DVLA, my fight I shall keep,

I’ll plot, I’ll conspire, all whilst you sleep.

Breaking speed limits on test day. (Well, so you say!),

Just eager to pass cars that got in my way.

 

Dear DVLA, 56 years driving, no hits – It is true!

Erratic driving? Oh have a whisky, or two!

Funeral cortege? I was going with the flow,

Reckless at 20, then on with the show!

 

Dear DVLA, my daughter’s a bully,

I’ve years on Soph – she doesn’t understand fully.

My faithful duster, my sharp horn… BEEP BEEP!

Marvellous dashboard! Hello lovely sheep!!

 

DVLA, you didn’t consider either,

The open road, the Mama, the red Vauxhall Viva!

12 months on and I’m still annoyed…

Turn a blind eye – your chance to avoid?

 

Dear DVLA, I want a retest,

Sit in my Viva, I’ll do the rest.

“40 in a 30”, again, so you say!

I’ll never give up, I’ll be driving one day!

 

 

 

 

 

Total heartbreak in calling time.

Today took its absolute toll on every part of my being. To say I feel completely, emotionally exhausted would not be an exaggeration. I honestly have never felt exhaustion like this. So why the hell at 11.30pm am I still wide awake? My mind, conscience and heart are all desperately trying to work together, to make sense of the last 36 hours of my life. Why I need to make sense of it all is beyond me. There is no sense in the torture of Dementia.

Yesterday morning, as I took my parents shopping, I really did appreciate just how much they had both deteriorated since I was off with them in the Autumn term, late last year. Dad was so lost. I was thinking how totally daunting a supermarket must be for someone who is struggling to find their familiar. It’s a busy place with many people under one roof. My fragile Dad looked so vulnerable. As he asked me if he could swap his Pepsi for coke, I left Mum by the greeting cards and took him to find the coke. As we were stood staring at the bottles of fizzy drinks, my Dad looked so totally lost in his own world. Gone were the days that my larger than life Dad would be talking to each and everyone. Yesterday, he made no eye contact with anyone; Once again, a painful reminder that Dementia had taken my exuberant Dad and left me with this fragile man of total vulnerability.

I had arranged day care for Dad today at The Court, in Rockbeare. I was due to drop him at 10am and collect him at 5pm. This day care would have been his first, and it was to allow him a break from Mum and vice versa. Yesterday, as we got back to my parents’ home after shopping, my Dad was in a pensive mood. He looked at me and said “What happens if I don’t want to come home from The Court tomorrow, Soph?”… Cue my Mum shouting at him that he would be coming home from “that blasted place!” My Mum then hit my Dad twice across the chin. At that point; I felt the absolute ugliness of Dementia. The total disregard for dignity. The eradication of a life’s work of selfless generosity. This fucking evil disease had turned my Mum into the polar opposite of the person she’d been her entire life…

When people tell me that this isn’t my Mum anymore, I’m fully aware of this. My Mum would be absolutely furious if she saw someone hit someone else. She’d be the first to interject and fight for justice. Yet here she was yesterday, taking a swipe at the man she’d spent 56 years of married life with. People can argue, until they’re blue in the face, that my Mum doesn’t mean it. I know this, I’ve lived with my Mum’s Dementia for 3 years. It’s very easy to sit in judgement and tell someone to not get cross with Dementia, but I would argue that you have to be in the moment to appreciate how difficult that is to control. I did shout at Dementia, Dementia had struck my Dad. My Dad’s words “She does this often,” was my final realisation that I had to call time on this home situation.

One thing I have found bizarre during these past 13 months; When I have needed to make an important decision based on the welfare of my parents, it’s my Dad who will offer me clarity and a nudge in the right direction. This morning, I got my nudge from Dad. As my Bugsy and I arrived at my parents’ to take Dad to The Court for his day care, my Dad looked absolutely shattered. My Mum was full of sentiments and kisses as he got into the car. As we left Mum and headed for the home, Dad told Bugs and I that he could no longer live with Mum. He spoke with clarity, he was articulate and had an unusual awareness regarding what he needed. This has happened on other occasions; whereby I cannot cope with a huge decision and it’s my Dad who has offered me the clarity and vision to move forward. I am not a religious person, I do not believe in a God, but one thing I do believe in is the spirit of others. I truly believe that the spirit of others will give you that much needed momentum, at a time where you feel heavy-hearted and beaten. This was certainly true of Dad today. He was guiding me to the right decision for his welfare and a better quality of life.

As soon as we arrived at The Court, Hollie, one of the Managers, was there to greet us. My Dad quite literally fell into her arms and cried and cried. I went to pieces, luckily my Bugsy was there to hold me. My Dad’s tears were that of relief and safety. As Bugs and I stood there, both of us in tears, we knew Dad would not be going home to Mum.

My Dad then walked into the vast lounge and began to talk to one of the residents as if he was home. He was immediately calm and I was immediately comforted by this.

Hollie assured us that there would be a bed for Dad until Sunday, when they had a new resident arriving. She gave me a hug. The staff at The Court are just phenomenal. It doesn’t just seem a job, they have huge, selfless hearts. I then had to phone Mental Health and Social Services with the state of play.

A day of phone calls then ensued. Due to the safeguarding issue of the previous day, it was now Social Services’ role to find my Dad emergency care. I must have spoken to at least 8 different people from various agencies. Each person seemed to offer me justification that what I was doing was the right thing. I needed to make my Dad safe, but at the cost of breaking my Mum’s heart. When I phoned the care agency who provides care to my parents, I held onto the Manager’s words, “Sophie, this has been such a hard decision for you to make, but it’s the right one. It had to happen.” (These words got me through a day of devastation).

Social Services have pulled everything out of the bag and have managed to get my Dad into a home in the interim, until I can find a home that I’m happy Dad can be in. I cannot begin to describe the gratitude I have for all the services involved. My hubby had to endure so many emotional breakdowns during the course of the day. Poor chap. So grateful he was there to help shoulder the heavy responsibility. So lucky to have my amazing Bugsy walk beside me on this journey. Love him so much.

After packing Dad’s case, whilst Mum was out with an Enabler, we drove to The Court. My Dad was sitting in the bright, airy lounge and he looked the picture of calmness… An entirely different person to the scared, vulnerable man who had stood before us this morning. Unbelievably grateful to the staff at The Court for the serenity in which they provide. Just so grateful.

All day, I had cowardly put off telling Mum that Dad would not be returning home from day care. My daughter had been enabling a little boy for the day, so I wanted to wait for Hats to come home, before approaching Mum with the developments. After Hats had finished work, we went to see Mum.

As I placed myself in the middle of Bugsy and Hats on my parents’ sofa, I just could not make eye contact with my Mum. I felt so totally torn; I’d had to make a decision which made my Dad enjoy a much needed quality of life. However, this would bring heartache and sadness to my Mum. Guilt, my champion emotion, was having an absolute fucking field day. Maintaining my cowardice, I just stared at the photo of my brother, Sacha, on the window sill and let Hattie and Bugs take charge of the conversation with Mum. I didn’t once look at my Mum, I literally could not handle seeing her pain at the hands of my actions. A Carer arrived at the house, so we left her to discuss the situation with Mum. She’s a lovely person and could see that we were exhausted.

When I got home, I sat on the kitchen floor and cried my eyes out. I miss my parents so much. They’ve both always been my go-to’s in difficult times. Grieving for my familiar parents, whilst desperately in need of their love and wisdom are difficult emotions to manage. As I sat on the floor, I phoned my Mum-in-law who indulged my tears and sadness. So lucky to have my parents-in-law, they really are amazing. Although there was a 20 mile distance between us, I literally felt my Mum-in-law was in the room holding me.

Dementia, you have absolutely broken me today. The devastation you leave in your wake is that of utter heartbreak.

 

 

 

 

 

 

 

 

 

 

 

Roller coasters, roller skates and the cyclical process of life’s lessons.

This week can be summed up in one word… Multifarious! I feel I’ve lived every emotion during these past seven days!

Thursday marked a year to the day that my Dad had his horrendous stroke. Complete life changer. What better way to get through this day and the memories of last year, than to be a child at Thorpe Park! When I was offered the chance of a 13 hour day with our year 10’s and three other staff members, I was hardly going to refuse! I’ve not been to Thorpe for at least ten years, so it was long overdue. Perksie and I did not stop talking, laughing… and eating sweets all day. It was so good for the soul. The roller coasters seem to feel even more exhilarating when you get older. Why is that? I suggest it’s because we have more life experience under our belt; We fall into the trap of chasing tomorrow and not indulging the present moment. Therefore, appreciate the thrill-seeking even more. On Thursday, I was certainly living in the moment, being present and living my inner child’s best day! I could talk to Perksie for hours and hours…. And I did! He’s Head of Geography at our school and a total twat… That’s why we get on so well!! Xxx

On Friday, we had to say Goodbye to some incredible staff, who leave for pastures new. I honestly felt I was living the entire twelve months of my life during that two hour assembly. The minute a couple of girls began to sing, my tears began rolling … What an emotional plonker! One of the people who left, Jen, had been an incredible friend to me. She was one of the people who interviewed me two years ago. I instantly loved this woman! She’s my kind of crazy. I was dreading letting myself down and being a complete idiot during her presentation  … I lived up to all my expectations…  and howled like a baby. I’m going to allow myself this. Why hide an emotion you feel consumed by? Jen has now left Axe, but she hasn’t left my life … Unless she runs … Then I will hunt her down!

I feel that during the last seven months, I’ve really found my feet back in my role as TA. In January, I returned, still broken and still uncertain that I’d made the right decision to return to work. By March, I really did begin to realise just how important my job is, whilst on this tricky journey with my Golden Oldies. I had considered giving up work to care for my parents, and trying to finish my degree that I got halfway through eight years ago. With respect to the degree, I’ve got nothing to prove to myself. I enjoyed the essays and studying, but I have no personal need to achieve the end goal any longer. With respect to my parents, my TA job allows me to settle back into the role of their daughter. Late last year, I had lost so much of myself. I truly feel that I’m back to being my stupidly energetic self. It’s amazing to have something familiar back in my life, whilst my parents are anything but familiar now. So grateful for my job and the self-preservation it provides.

We had our end of term drinks on Friday. The people I work with are just such a lovely lot …. And many of them, like me, are bonkers! It’s an amazing team. Again, I’m very fortunate to be part of it. I made sure I partied in true Sophster style, I didn’t disappoint myself haha! (I hope!).

With the six weeks ahead, I am concerned that the Mothership will increase her demands… This was certainly apparent today… “Soph, now you’re off, you’ll be able to do more for us!” Truth be told, I feel I do so much already! However, my Mum is no longer in a position to appreciate what my family and I do.

When Bugs, Hats and I arrived at my parents’ home, we were met by an extremely low, unhappy and unsettled Dad. I cannot begin to describe how this made me feel. It completely floors me to see Dad aware of his deterioration. I would argue with anyone that it is far easier to see a loved one unaware of their lack of cognition. Today, Dad was tearful, sad and very vulnerable. I hate these days. It fills me with a complete sense of helplessness and heartache.

I make an effort to take as many photos as I can. People might question why I do this. Honestly, I don’t care what they think. My parents still look like my parents, just with faraway glances. Just because they both have tangled brains, doesn’t mean I should give up the photos. This returns to the idea of living in the moment, and a picture is a frozen image of that precious moment.

When we visit, we try our best to allow my parents to be independent. My Dad will always offer us a cup of tea. It would be a lot easier for us to make our own drinks. However, it’s good to see Dad carry out a habitual routine, regardless of the fact that it often proves difficult. Today was no exception. As he went to pour the milk, he lost balance and poured it all over the worktop. As I rushed to help him, his first reaction was concern that Mum had seen it. He was so anxious of her reaction. I cannot be at my parents’ day and night, but it worries me sick that tempers run high when it’s just the two of them. Again, this leaves my Dad vulnerable as my Mum’s Dementia is far more volatile than Dad’s. Fifty six years of marriage, a beautifully equal partnership, and I’m now worrying what happens when they’re alone. I fuckin hate Dementia and its total disregard for dignity.

As the five of us sat around their dining table, I began to get Dad to discuss what was happening in his head today. He once again said “Soph, this is not the place for me anymore.” Being very much a fight or flight sort of person, I immediately started to brainstorm respite. If I left my parents in this vulnerable situation, I would dread any dangerous ramifications in doing so. My hubby, on the other hand, is far more able to weigh it all up first before reacting. His job allows him this, but he has always had this ability ever since we were children. He’s annoyingly amazing, but I love the bugger! He suggested we leave it until tomorrow before we look into respite. I’ve had my fingers burnt so often; arranging respite for Dad, then at a moment’s notice, my Mum has managed to manipulate him in to staying. This has then left me with the awkward task of ringing the home to cancel Dad’s stay.

When your Dad, your hero, is sat looking so totally lost in a world he’s not happy in, it’s utterly heartbreaking. I was swallowing back tears, determined to not let him see the extent of my sadness. My Mum was completely oblivious to the whole situation. My beautiful daughter was giving me her usual comforting touch. As I sat at that table, I felt the only person whom I could really show my tears to was my hubby. Throughout this journey, I’m constantly aware of the impact this has on Hats and Lou. I don’t want them to see their Mum a broken mess, I want to be a strong example for them. My twenty-three year old was, as always, offering words of wisdom. Just so proud of her generous and selfless heart.

Today, more than any other day, I found myself repeating my Dad’s words he has instilled in me all my life. When he was apologising for not being happy today, I began to quote all the life lessons he has taught me. “Be kinder to yourself” seemed to be the most apt one today. There I was trying to be the grown-up daughter attempting to share my beloved Dad’s wisdom … With my Dad! Trying to be firm with Mum and not allow her to talk over Dad. Trying to be strong in front of my baby girl. Just generally trying!!! All the wisdom our parents impart over the years is then given back to them in their hour of need. It really is a cyclical process.

I’ve allowed my tears today, its healthy. I feel stronger again tonight. Love my hubby so much. He has been there to weather this storm today.

My Lou returns from Greece tonight…… I’m hoping he takes his Muvva to the skatepark before he returns to work later this week. My roller skates need a good, old burnout!

I will upload this blog to my Faceache page. However, I’m not eliciting a response. Just knowing that people take the time to read my blog amazes me. I have such amazing people in my life. I know who you all are. xxxxxxxxxxxx

 

 

 

 

 

 

 

 

 

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Dad xxx

Twenty-eight detentions clocked up in one term,

Too much to say, but eager to learn.

“Soph learns from mistakes,” was said on repeat,

My tolerant Dad, a hard act to beat.

 

School gerbils would stay for a welcome retreat,

Four little ‘females,’ fawn in colour, so sweet.

By the end of the summer, we knew one was male,

Cue 28 babies, and a small, furry ‘tale!’

 

I always wanted to attend Dad’s school,

But he never gave in to this crazy, class fool.

My friends were taught by my ingenious Dad,

I felt envious, but knew I’d make him go mad!

 

My big forehead, my energy, both come from my Dad,

I considered both flaws, in the past, but now glad;

I’m proud of the moles on the right side of my face,

My Dad has them too – exactly same place.

 

Today, as I look at my sweet, scrumptious Dad,

I think of all that he taught me, and to never be sad.

No time for reticence, he stood out from the crowd,

My teacher of life and laughter. So proud. Xxxx