Pressure.

I already feel guilty writing this blog today. Yes, this week has been one from hell, but I know that people are going through worse. Our cousin, Bonnie, in Canada, is going through so much right now. The tumour in her liver is pushing on nerves, causing her the most excruciating pain. Pain I cannot begin to imagine. So, whilst I’m sitting here considering my next move. I’m aware that people face even bigger challenges. Cue the guilt. But I know Bonnie is always the first to say that everyone can have problems which test their own personal strength. She’s an inspiration. I feel so lucky to call her family xxxxx

So, as with my previous blogs, I use this cathartic process to voice my emotions, and hopefully help others going through a similar ordeal with their Parents.

Since Christmas, my Dad has begun to write a book. This has quickly become an obsession. Within the last 8 days, his energy levels have risen drastically. Post stroke fatigue is very much a thing of the past now. My Dad has lost 8 days of sleep, and sadly is now in the throes of mania. This is incredibly dangerous for anyone, especially an elderly person, post acute stroke. He has significant paranoia, paranoid that someone is breaking in to steal his manuscript and various other anxieties. In reality, my Dad is ripping the work up himself.

33 years ago, as I’ve said in an earlier blog, my Dad had a nervous breakdown when he was Headmaster of Bradninch school. The previous Head was forced to retire due to his age, and could not let his former school go. As an 11 year old child, much was kept from me. However, this week, my Dad’s been going over all the events of 33 years ago. It makes my blood boil hearing what my Dad went through. The previous Head just couldn’t let go and played hideous games, resulting in Dad having to take early retirement, following a 27 year career in Teaching. During this time of his breakdown, he had a manic episode, resulting in him being given a diagnosis of Bipolar Disorder. He has not had depression or mania for 33 years… Until now.

I started back at work on Monday. This was a massive deal, after not being at school since the end of the summer term. It was so lovely to see familiar, smiley faces. As I was driving there, I felt like a new kid about to start their first day of school. I work with such lovely people, with big hearts. It was good to be back in my familiar. However, I never imagined the tiredness I’d feel on my return. Probably exacerbated by the fact that I felt so torn. Knowing I needed to try and regain some sense of my own normality, whilst knowing my Parents’ life is anything but normal now. It was so lovely to see the children, I’ve missed many of the characters so much. Leaving my Parents and the fragility of their situation was a huge ask of myself. I can’t praise my Line Manager enough. She has so much empathy for my current situation. I’m so lucky to have such a good support from all the amazing team.

After work on Monday, I visited my Parents and my Dad was argumentative, irrational and erratic. It also transpired that he’d made many calls to people. So I spent the afternoon ringing people, such as Kings school, to apologise for his odd calls. This reached crisis point on Tuesday night. I had to get advice from a GP, who recommended I take Dad to hospital, my Dad refused, so we had to settle for giving him a sedative instead. On Wednesday morning, my boss sent me straight home. I had to get someone from the Mental Health Team to come and assess my Dad. He was really thorough and could see that all was not well. So a plan to alter his meds was put in place. Unfortunately, since then, things have become more erratic with Dad. Yesterday afternoon, I had to get someone from the Mental Health Team to visit again. As I was stood in my Parents’ hallway privately talking to the Practitioner, the tears came. I told him that these last 6 months had taken its toll on me and my own family. The words “Your Dad would have been admitted by now, if it wasn’t for you, Sophie” really got to me. I’m not a Social Worker. I’m not a trained Mental Health Practitioner. I’m just a daughter trying to keep her Parents safe. As he tried to compliment me on all I’ve done, I felt so despondent. The more you do, the more people expect, it just perpetuates the problem. He told me I’d saved a lot of people from tearing their hair out with my Parents’ vulnerable situation. What about me?? They’re the professionals. They’re paid a salary to deal with these situations. In the meantime, my own job had to be put on the back burner, and my Managers have had to be incredibly understanding.

When you’re a Carer, many things are put on the back burner. I feel like the worst friend, I have little time to see people and catch up on their lives. I feel like a crap wife, my Hubby has had to put up with so much during these last 6 months. I’m so consumed by my Parents’ vulnerabilities, that I’m distracted, and not the best Mum to my two amazing children. The last 6 months have had a detrimental effect on all aspects of my life. It’s very easy for people to sit in judgement, and say “let the services take over.” When you experience a situation like this, the reality hits that life just isn’t that simple. I’ve learnt the survival technique of taking one day at a time.

This afternoon, I have my Mum’s CT scan, which will hopefully lead to a formal diagnosis by the end of the week. After the scan, I will have to make a judgement call about my Dad. I know he needs admitting. He walked to town earlier this morning, in odd shoes, and banged on the Police Station door to report a burglary, it’s scary just how vulnerable both my Parents are right now.

If anyone reading this has encountered my Dad this week and heard about burglaries etc. Please know that he’s not a well man and not of sound mind right now.

Due to miscommunication ??? The enabling is down for me to sort. So I’ve got a Care Agency taking my Parents on from next week. But, firstly, I need to get help for my Dad. If any of this resonates with anyone reading it, I’m sending you love and respect. If you’re a Carer, please remember that your wellbeing is really important too xxxxxx

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2018, Off you pop.

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I hope you’ve all had a lovely Christmas and have filled your boots with festive food xxxxx

Christmas, Chez Madhouse, has been banter, to say the least. My Dad has been in a hilarious mood! Saying the funniest things. After 5 months of his mood being very low, post stroke, it’s been lovely to see him happy. A couple of days before Christmas, he had yet another fall in their garden. He couldn’t get up for ages. His revelation, on Christmas Day, “I’m ready to sell our house,” was absolute music to my ears! Within five minutes I had packed them all up, ready for the move. (In my head, of course!). The fact that he hadn’t told my Mum of his plans, until then, made it even more hilarious! The Vickery four and Al all leapt into action with suggestions and property searches. Dad kept asking if there will be “running water” at the new property! Bless him. My Dad has always been the joker of the pack. I have missed his humour so much these last few months. His brain is very muddled and confused, however, this return of his humour has been so funny this Christmas.

Al went on the hard sell, giving Dad information on a supported living complex in Honiton. By the end of the sales pitch, Al had my Mum convinced she’d be able to teach the other Residents the piano… Poor people! Dad was really excited for a move. I thought it was in the bag, until they were leaving and Mum said “I think a stairlift could be a possibility in our house!” … It’s going to be a bloody challenge, but as relentless as that woman is, I will always fight fire with fire. We are going to two viewings next Thursday, watch this space!

Mum has been hard work this Christmas. Dementia is extremely selfish. Clive’s Aunty came here on the 27th for dinner. We lost Uncle Fred on 5th January this year.   Christmas has been really hard for Aunty Win, without her husband. As she sat at the table, after dinner, talking to my Parents, Dad asked how Uncle Fred would have coped if she went first … Not really the question you ask someone!! Unfortunately, post stroke, my Dad has lost his filter for appropriate questions! Aunty Win completely understands that Dad has brain damage, however, it did make her cry. My Dad grabbed her hand and held it, apologising profusely for the question. I was sat beside Aunty Win, hugging her. My Mum just continued to do her crossword, totally oblivious to conversations around her. My old Mum would have had a heart full of empathy.

Aunty Win then played a game of Uno with my Parents. I was busy in the kitchen. Hats says Aunty Win was playing both their hands with them, helping them both. I’m glad I didn’t watch the game, my Dad used to play Uno with the children he privately tutored. It’s sad that he’s now unable to understand the game.

DVLA saga continues … On the Saturday before Christmas, my Mum received yet another letter from them. I kid you not, she only seems to receive correspondence from them on Saturdays! I do feel that someone in the Swansea office is providing me with lots of material for a future book! They continue to reply to her letters, which leads me to believe that they are; a) Too polite to ignore her b) Enjoying her letters c) Not busy enough and have too much time on their hands? This last letter contained photocopies of her latest correspondence with them. At least I now have evidence of what she’s writing to them! (I’m attaching a copy of her letter, hoping it makes you laugh). She’s frustrated that she can no longer drive the Qualcast at great speed, so she’s taking to letter writing at 100 mph.

My Parents have always been big letter writers. Dad’s Occupational Therapist has worked really hard with Dad’s letter formation over the last 5 months. He is now writing short letters to EVERYBODY! He’s even written a letter to my boss, thanking them for letting me take care of Dad this year. I would show my boss the letter, as I know they’d find it funny, but Dad thanks “Harriet Heroic” at the end. Haha! My daughter always comes out on top 😉 Today, he’s written a letter to the surgery, thanking them for everything. It also mentions the car park, “lovely computers” and the patient he sat beside yesterday! It’s a muddle of humour and serious, bless him. Dad took a book they had about illnesses to his GP yesterday. He told him he could have it. When I asked Dad what he’d said to his Doctor, he said “I told him it was a good book, which he might find very useful for his job!”… Suffice to say, his GP thanked him for his kindness, but declined his offer of the A-Z of illnesses …

I’m returning to work next week. I’m looking forward to it, but also apprehensive about leaving my Golden Oldies. I tried to reinvent myself with a haircut last week, but 4 inches is all I could manage. I hide in my hair when I’m having a bad day. Regardless of the fact that I wimped out on a new me, I’m determined to start 2019 as a 5ft 2 Ninja, kicking life’s butt.

2018 has been a huge learning curve for me. Life experiences shape us. I have severed all ties with my sister. This, until now, has made me feel really sad. However, approaching a new year, I’m leaving those feelings behind me. My sister has never been there for me or my family, so I shall not waste any more emotions on her. I have amazing, selfless children and hubby. I also have fantastic friends. So lucky. It really does take life’s challenges to realise who your true people are. I have so much love for my army. Xxxxxx Happy New Year to you all. I hope it brings good health and happiness to you all xxxxxxx (And a Happy New Year to the DVLA from Lewis Hamilton and her family!).

 

Apple Crumble and Guinness.

A few of my friends have asked me why I’ve not blogged for a while. Truth is, the situation had got me a tad low, so I’ve been doing some soul-searching.

My daughter’s opinion of me being my Parents’ Carer, “You’ll lose your identity, Mum.” … I truly do not know where that girl of mine gets her insight and wisdom. I cannot believe she came out of my body! For 5 months, I remained defiant and determined to prove her wrong. However, I’ve had to come to terms with the fact that she is right… Annoyingly, her insight is always spot on! Lately, I really do feel I’ve lost my identity.

My relationship with my Dad is unaffected by the last 5 months, apart from the fact that I’m more protective of him than ever. During the last 4 weeks, he has been making progress. This has been great to see. The best thing is to see him smiling again. There have been very little smiles since July.

My relationship with my Mum has most definitely changed. I love her so much, but she tests my patience, and I don’t like how this makes me feel. I never want to feel anything but love for my Parents. So to feel frustrated with Mum’s behaviour is hard to accept. When you become Carer to your Parents, it’s inevitable that your relationship with them will change. However, I wanted to believe that it wouldn’t.

On my Dad’s birthday, the Kids, Bugsy and I took my Parents out for a meal. It’s become a running joke that Mum always helps herself to Dad’s food. On this occasion, she took it upon herself to mix his Apple crumble and custard!!! With Dad telling her “I don’t want it mixed up, Mary!” The rest of my family found it hilarious. I wanted to find it funny, but I felt too annoyed! The icing on the cake was when she asked him if he wanted some of her coke. Leaving him no time to reply, she poured some into his bloody Guinness!!! You might be reading this and thinking so what, Soph? But my lack of seeing the funny side, told me I needed to take stock. I’ll always try and see the funny in life, however this has definitely been out of service recently.

I’ve lost so much of myself during these last 5 months. I miss my stupid ways, my charging around at high speeds and my positivity.

Last week, I told Social Services that I will be returning to work in January. Enabling services will help my Parents on my return to school. My Mum is not keen on the idea of having to pay for such services, however, I’ve repeatedly told her I’ve been their unpaid Enabler for the past 5 months! Now, they will have to pay for the help.

I feel apprehensive about the whole thing, but know, in my heart, that I need to get my life back to some sort of normal… As normal as a person like me can pull off! I worry that my Mum won’t take to having outside help. Time will tell. But I know I’ve given them my all for 5 months and I need to get back to work.

We’re still yet to have Mum’s CT scan following her memory assessment last month. I’m sick of chasing up people with phone calls. You really do have to keep on, to get results. It’s infuriating, not to mention exhausting! We know my Mum is not the same person any longer, but the diagnosis will confirm this.

I would like to thank everyone in my life. You’re all incredible and I’m so lucky to know each and everyone of you. In testing times, you certainly discover who your army are. Apart from my amazing Kids, Hubby, Marit and my In-Laws, my family have not been there for me. However, I’ve truly found the true measure of friendship in all of you, and I’m so grateful to you. The stupid Sophster will be back. I hope you all have a lovely Christmas and healthy new year. All my love. (And yes, ‘Love’ will forever be my favourite word… Along with ‘Cat’ and ‘Chocolate!’). Xxxxxxxxxxxx

The difficult shift in parental responsibilities.

Please, I do not want any tea and sympathy from today’s blog. I’m simply using it to voice my frustrations. All I’ve ever wanted my blog to do is share my thoughts on the struggles with ageing Parents. We all have Parents who will get old. We have the responsibility to take care of them. Nobody is immune from this. My blog is a cathartic process for me. When I feel crap, writing about it seems to help. I also hope that someone else, on a similar journey, will identify with the complexities of all the mixed emotions you feel.

Our cousin, Bonnie, is a total inspiration to me. She is certainly one person who could allow herself those ‘poor me’ moments, but she doesn’t. Whilst she’s waiting for results from a CT scan, post yet more Chemo, her attitude is as courageous as ever…

“So many things with cancer are out of my control… My hair is mine though, so I didn’t really care what everyone else thought I should do.”

Even Bonnie’s attitude to deciding, for herself, when the right time was to cut her thinning hair, was forthright. She is such a brave example of not letting things beat you. I have nothing but complete love and admiration for this woman. When life throws you a curveball, you just have to keep dusting yourself off and renew your fight. Just like our incredible Bonnie xxxxx

So this isn’t a poor me blog, it’s a frustrated scream, in a hope to kickstart my optimism.

One week on from Mum’s memory tests and I’m still awaiting the results and a date for the CT scan. The Occupational Therapist made noises about enabling services to allow me to get my own life back on track. Again, it’s all just talk right now. Clear diagnosis for Mum is all I bloody need!! I’m not a person who is very good at treading water, I need momentum. Lately, treading water is all I have been able to do, and it’s doing my bloody head in!

My Dad still continues to make progress. Whilst it has been incredible to see this during the last two weeks, I’m ashamed to admit I’m too exhausted to fully appreciate and celebrate this. The last four months have been mentally gruelling, leaving me with very little energy to focus on anything else. It’s amazing to see Dad become more aware, however, it does not solve the problem which lead to him becoming ill in the first place. He had become totally exhausted being Mum’s unofficial Carer, and I have no doubt that this played a huge part in his stroke.

During a conversation with a Practitioner this week, she made me aware of the fact that I might feel overwhelmed once help is in place. She discussed adrenaline being a resource that gets us through tough times, when we finally get chance to take the pressure off, we can often crash and burn. To be honest, I feel I’m already at this crash and burn stage. When you’re constantly told that things will be put in place and they just don’t deliver, you cannot help but feel completely despondent.

You reach an age where your children are becoming independent and self-sufficient. Suddenly the shift goes from being Parent to your children, to being Parent to your Parents. I have a family member who visits my Parents for a few hours every 5-6 weeks. They don’t appear to feel the responsibility to take care of my Parents as I do. I’m unsure how their conscience allows them to be like this, but that’s their issue, not mine.

My Hubby and I were meant to be having a night away in Dartmoor today, courtesy of our amazing kids. Unfortunately, Evie, our dog, has been really unwell this week. Sleep hasn’t been on the agenda and we don’t feel like we can leave her with the kids. Regardless of them insisting we go. It’s possibly a long term kidney problem. So Evie has to be our priority. It would have been lovely to get away, but sadly the timing isn’t right. Dartmoor will always wait for us.

Xxxxxx

DVLA, Digestives and Doldrums.

I’m very grateful to my lovely Mum, she’s kindly put me on an accelerated ageing programme during these last few months. Each time I see a new grey hair, I know I’m winning! I am also in a deep and meaningful relationship with McVities… However, it’s a slightly one-sided partnership, it really does take the biscuit sometimes, but I’m not bitter.

This Saturday began like any other normal Saturday… With not just one, but three letters to Mum from her beloved DVLA!! We absolutely love their close relationship, it’s a truly, beautiful thing. Today’s offerings were; one to say they’d heard from her GP that she was having further tests regarding her health, another to say it will be “some time” before a final decision is made, the last one explaining that the decision was made and she would no longer be in possession of a driving licence… It begs the question as to how long the DVLA consider “some time”, as quite clearly, some time was a few minutes?? It’s fair to say we now have a plethora of correspondence from the lovely folk at the DVLA. Bless them. It’s amazing how the majority of their letters are received on Saturdays. To be honest, it’s all I look forward to each week. I’m totally at a loss if we don’t hear from them. Long story short … (Are you having a laugh, Soph?!), final decision has been made to keep Mum off the road, (after that thoughtful individual’s idea to contest).

Recently, I have felt completely defeated. The last fortnight I’ve felt beaten by the whole situation. There are only so many times that you can say, to the powers that be, that you are struggling, before you begin to just give up on yourself. When you’re fighting professional services for help, it takes all your energy, not to mention your spirit. I have felt so helpless with the fragility of my Parents’ situation. I know my Hubby has probably dreaded walking through the door, to deal with the aftermath of yet another day of frustration. (If I was him, I’d check the bin first to gauge how the land lies.  The empty biscuit packs would be indicative of my current mood… I’d make the right decision, and head for those hills!).

During the last week, there has been a definite shift in Dad’s mood, this is lovely to see. He has also been a lot more aware too. I can see a little bit of my old Dad in his eyes. He’s beginning to write again, and his determination to do so is completely inspiring. Once again, demonstrative that my Dad is small, but mighty. I can’t begin to say how fantastic it is to see Dad practising his writing. I’m still realistic, but I see small steps forward. It has been a long time coming… having monitored him for the past four months, and seeing very little improvement.

Yesterday was Mum’s assessment. I’d been dreading this day for weeks. Slightly bad timing being on my Hubby’s birthday. Hat had a Non-pupil day, so she was off as well. Bugsy and her took my Dad for a walk and coffee by the coast, leaving Mum and I for her assessment. The Mental Health Practitioner was a friendly chap, with a great sense of humour. For the win! He’d obviously been sufficiently briefed regarding the circumstances. When he asked me “Are you a grown up?”, I knew we were in safe hands haha!

He spent an hour and half doing intensive memory tests with Mum. It’s really interesting to watch. Testing all five domains of the brain; Attention, Language and Communication, Memory, Executive functioning, Sensory and Motor function. Mum certainly rose to the occasion, getting high scores. As I was sat there watching my Mum being tested, I felt desperate for answers to explain her change in personality. The high scores were definitely not giving any clarification! However, the last part of the test was the area she struggled with. It was actually heartbreaking to see her struggle to recognise objects, animals etc.

The Practitioner was really thorough. He said the next step would be to fast track Mum’s CT scan. He spoke about a need to gain the big picture to organise a care package tailor-made for my Parents’ situation. Finally I felt I was being heard. During Mum’s test, I had to fill in information as to how my Mum’s condition impacts on my family’s life. Now we wait for the results, wait for the scan and then hopefully have evidence for support. Yesterday wasn’t an easy day, but it gave me a much needed kick to keep fighting. Whilst I’m very much a person who despises labels, a diagnosis of some form of Dementia will get the ball rolling to get some help.

Our amazing kids have treated Bugsy and I to a night away next weekend, in our beloved Dartmoor. They’ll hold the fort here. So thoughtful of them… And very brave! As soon as I heard “Cream tea on arrival,” I was sold. Xxxxxx

Socks.

Yesterday I felt so overwhelmed with my Parents’ situation. I hate those days. I rely on my energy to get me through things in life, but my energy levels were utterly depleted. My Mum was testing my patience.

On Sunday, my Dad was really unwell. As we sat and watched the Remembrance parade on the television, he spent the whole time asleep. His body seemed extra exhausted that day. It’s so good to see him resting, but my Mum has a habit of trying to wake him up. I can’t begin to tell you how frustrating this is! She does not appreciate how unwell he is. On days where my patience is wearing thin, it’s incredibly hard to deal with her.

After spending so much time with Mum, I know her strategies to hide her dementia from people. As we left the surgery on Monday, a lady stopped to talk to my Parents. Dad had no energy to talk, but Mum was her chatty self, explaining to this lady that “Derek had had a minor stroke in July.” The word “minor” bloody infuriates me! Their GP has continuously pulled Mum up on this, explaining that Dad’s acute stroke has left him extremely unwell. As we said bye to this lady, my Mum then asked Dad who she was!!! This happens all the time. She fails to know people, but will continue to talk to them, hiding the fact that she can’t remember them. Mum has always be champion at keeping up appearances, so I shouldn’t be surprised by this.

Dad had another fall in the garden over the weekend. He was sporting a nasty cut on his hand. When I questioned him about it, again, my Mum leapt in. She hadn’t even been aware he was hurt. She then said it was “only a small graze.” … That it certainly wasn’t. My Dad has lost a lot of weight lately, weight he can’t really afford to lose. At times, he is really unsteady on his feet.

My Mum has taken to wearing Dad’s bright, stripy socks. She’s cross that Dad no longer wants to wear them. He has always been an exuberant, larger than life character… I know that he just doesn’t feel the flamboyant socks anymore.

Throughout all this, I have learnt so much. All the philosophy you’ve been brought up on, suddenly comes into practice when you’re parenting your Parents. As the dreaded revocation of Mum’s driving licence reared its ugly head once more, I found myself saying “Count your blessings please Mum!!”… Honestly, I could have said more! It really is cyclical. As a child, we are taught to be grateful for all we have, righty so. Sadly, when dementia steps in and takes control of our loved one’s brain, we often see behaviour that is so profoundly dissimilar to that of their former character. My Mum has never shown any selfish traits whatsoever, but she’s incredibly selfish these days. This leads me to unequivocally say that she has had Dementia for the last three years. With her assessment next week, I’m hoping we have a clear diagnosis. The Social Worker said it’s a given, however, I’ll reserve judgement until next week.

With the emotional roller coaster you find yourself on when looking after poorly Parents, I believe it’s justified to have moments of exasperation. I have all the patience in the world for my lovely Dad. My Mum, on the other hand, exhausts me! The character she presents is so far removed from my old, familiar Mum. I miss my Mum so much.

After a long chat with the Social Worker today, I feel I have a little more vision of where I’m heading, in terms of care for my Parents. It’s still waiting games; waiting for Mum’s diagnosis, waiting for care packages. I just feel that I know things are moving in the right direction… I hope at least! A couple of weeks ago I was discussing with our lovely friend, Pete, the fact that Hats and Bugsy worry that I’m losing my identity by being my Parents’ Carer. Pete reassured me that I will never lose my “Mad Soph” identity. I felt happier to hear that, until I told Hats and she said “I’m sorry, Mum, but it’s happening already, you’re losing your spirit.” I love my daughter’s honesty, even when home truths cut deep.

Blimey, this blog is a tedious read today. Apologies. I’m on it. Kicking my arse, eating the biscuits and looking for the funny side of life. I’ve even considered getting the Qualcast resprayed… Go faster stripes? My Mum’s “lovely, red friend” has to be the worst car I’ve ever driven. Anybody who wants to modify the Viva is very welcome right now. Happy Wednesday you lovely lot xxxxxxxx

 

 

Power cut.

Lights out, food stopped, power cut to the brain,

Pathways broken, processes damaged, lucky ones remain.

With no backup storage to cushion the blow,

Lights are back on, the blood regains flow.

 

The brain is amazing, until it falters,

But when it crashes, everything alters.

Taken for granted when it runs well,

A stroke gives no warning, the brain doesn’t tell.

 

The brain needs rewiring, a tangled mess,

You’re left with confusion, fatigue and distress.

You’re told to be patient, let the brain heal,

You’re allowed to feel anger, the stroke came to steal.

 

You’re my incredible Dad, you made people smile,

Now is your time to rest for a while.

We’re so lucky to have you, the stroke didn’t win,

My mighty Dad, hidden strength from within.