Since losing my dad in May, I have desperately wanted to see Mum’s dementia plateau for a while; to allow me the time to grieve. Her dementia has been a slow-burner for the last ten years and I wish it could remain that way a little longer. This is sadly not the case now.

My GP had warned me that losing Dad would have a detrimental effect on Mum’s dementia, but I do not think I fully prepared myself for just how much. She rarely discusses Dad, but after fifty-nine years of marriage, she must know that her soulmate is missing from her life?

The last year has impacted so greatly on my own mental health. I have always celebrated the fact that I am able to run on empty. Now, I see it as a curse, not a blessing. My body can be absolutely exhausted, yet my mind has many miles to do before it surrenders to rest. I am now seeing the results of this.

With a holiday booked for this August, I thought I had everything in place for Mum whilst my husband and I would be away. However, as it got nearer the time, I knew I needed to keep Mum safe whilst we were out of the equation. I phoned Silverleigh, where my dad had been looked after so beautifully for three and a half years, but unfortunately they had no space for Mum to have two weeks respite. I then resigned myself to the fact that I would get as much support in place to give me peace of mind whilst away.

I am a big believer in fate.

As the holiday was drawing closer, one particular morning I was feeling really low and everything felt too much. I opened a little tube of Dad’s ashes I had for a necklace I am having made. The lid was open. I had my phone in my hand about to ring our social worker and admit we needed more help. The phone went and it was the manager of Silverleigh saying there was a space the following week for Mum to have the fortnight of respite. Luckily, the lovely manager knows I wear my heart on my sleeve and dealt with my meltdown and tears of relief! I do not doubt that Dad had a hand in this. He knew I needed his help.

Whilst my husband and I were recharging our exhausted batteries and letting the sunshine do its thing, it was such a relief to know that Mum was being looked after by all the Silverleigh staff we now consider extended family.

Although I was in holiday mode, I had many questions flying around in my head. Would Mum’s first ever respite see a decline in her cognitive skills? Returning to her bungalow, would she be able to remember basic skills: boiling the kettle, heating food, turning on the television and personal care? Two weeks is a long time apart from her, would I see big changes? And the biggest one – Will she even want to go home?

Our daughter was the point of contact and she visited Mum and fed back to us how she was doing. So we were not completely out of the loop for those two weeks. Hattie told us that Mum had settled really well at Silverleigh. Although she could not remember Dad had been there, there must have been elements of familiarity for her to be so instantly settled. This gave me such comfort to hear and allowed Clive and I to enjoy our holiday. But I knew that the day we would be picking her up would be a tough one to navigate.

Yesterday was the day I was due to pick Mum up and bring her home. I asked one of our lovely Silverleigh family for advice and she delivered. She told me that I needed more time to think about Mum’s future. I cannot think about Mum’s future whilst resuming my role as main carer. So I reached the difficult decision of extending her respite for a further two weeks to buy me some time.

Sitting with her and telling her that she wasn’t coming home yesterday was so hard. She wanted to come home with Clive and I. She wanted to be back in her bungalow. She looked so well cared for and she had made lots of friends. But when she saw Clive and I walk in, she made the connection she was going home. I cried lots last night and downed the wine. Am I doing the right thing? I do not know. Will a further two weeks respite have an even greater impact on her cognitive decline?

I do not feel emotionally ready to see Mum in Silverleigh so soon after losing my dad. I know her situation is changing quite significantly and she needs to be safe, but it would break me to see her go in there so soon. I have no idea what the answer is? Do I give up work to look after her for as long as I can? She cannot live with Clive and I as we have stairs. I have also fought so hard to remain her daughter for as long as possible, not her carer. Our social worker was her usual incredible self today, talking about an interim period of carers coming in three times a day to keep Mum at home that little bit longer? There is so much to consider and explore during the next two weeks. I really hope my dad helps me find the answers. I would prefer to think I can make baby steps towards Mum’s future, but recent events tell me those steps are now giant leaps in her best interest.

Why do I write these blogs? Firstly, it is such a cathartic process and a way of organising my thoughts. Secondly, dementia is the most harrowing journey which needs to be discussed much more than it is. Today, there is still so much ignorance surrounding this disease. People often refer to dementia sufferers as being like ‘children.’ This makes my blood boil! They are individuals who have a devastating disease which leads to a devastating cognitive decline. And no two sufferers are the same. People like to categorise, but every individual is unique on this journey of devastation.

As always, I will end on a happy note. As Clive and I were approaching Bristol Airport, outward bound, Mum phoned and asked if we had enjoyed our holiday? She asked us how it had been and did we have a lovely time? We had not even left the country at that point! I have to say that Bristol is particularly beautiful in August!

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When I visited Dad after work on 11th May, little did I know that I would be receiving that dreaded phone call at 4am the following morning to say that he was seriously ill. I held on to every word the doctor said. She was preparing me for the worst. My heart was breaking and she was the kindest voice on the other end. I kept taking myself back to the night before, where I had watched Dad enjoying his usual can of coke and favourite chocolate. I desperately wanted that time back. I had been witnessing my lovely dad slowly disappear for five years; but I didn’t feel at all ready for final goodbyes just yet. But who is?

As my husband and I arrived in Dad’s room, we saw immediately that things were not good. Despite completing treatment escalation plans on behalf of Dad, the two doctors who visited that day still had to ask me if I wanted to avoid hospital admission. I knew, in my heart, that Dad needed to be kept in the place he had called home for the last three and a half years. The staff at the home reassured me that it was the right decision. Both doctors, separately, agreed that it was the right thing to do.

Regardless of the fact that I had had no contact with my sister over the last five years, I knew I needed the staff at the home to inform her that Dad was very ill. She visited Dad during the afternoon and Clive and I sat in the garden. I was not ready to meet her that day, after all that time, as I was dealing with some really tough emotions. I knew I would have to face that meeting at some point, but just not that day.

Our two children, Hattie and Louis, arrived to see their grandad that evening. I know it was a shock for them both to see their ‘Dandan’ so poorly. Louis sat on the window seat behind Dad’s bed. I know he was holding back tears. Dad suddenly said, “Oh Lou.” It was one of those moments that takes your breath away. He couldn’t see Lou; he was sat behind him, but he knew he was there.

The following day, my sister brought my niece to see Dad. Fortunately, Hattie was there to support me. I lay on the bed, cuddling my dad, as I felt so many raw emotions in that room. I hadn’t seen my sister, or my niece, for five years and there they were. I needed Dad to hear both his daughters’ voices. I had to leave my feelings outside the room. It was a tough morning.

I moved into Dad’s room for the next two weeks. I was offered the guest room at the home, but I knew I needed to be beside Dad in his final moments. So they gave me a mattress on the floor. I quickly became the youngest resident at Silverleigh. I cannot praise the staff at this incredible home enough. The lovely team would come in for regular hugs and chats. The chef fed me. Not that I needed to see it, but those two weeks gave me a beautiful insight into the incredible people they all are. They have become family. They have the biggest hearts and maintain their residents’ dignity so beautifully.

Sleep was not an option, but I did not care. I just needed Dad to know he was not alone. Ordering Mum new clothes became a regular pastime at 3am. I am sure M&S were like, ‘Oh it’s her again!’ Clive would check Mum’s bank account each morning to know how my night had been. Mum thought it was Christmas every day with all her new parcels.

I am so grateful that people at my work were so understanding. I was not fit for purpose. This five year journey was coming to a close and Dad needed to be my priority. One of my colleagues, Shane, walked past Dad’s bedroom window on his way to work each morning. So he would tap on the glass and then I would have a quick conversation with him. Things like that get you through.

One morning, I decided to play some of Dad’s favourite songs. For me as much as for him. As I began to play Dire Straits, The Killers, Fleetwood Mac, The Chicks and many more, my beautiful dad was responding to the music. I began filming for my family. He started to hum to the tunes and sometimes sing the lyrics. These videos are now pure gold dust to my family and I. And I feel so protective of these beautiful moments. It also reaffirms everything I have felt about dementia for these last harrowing five years. People have often asked me how you can visit a loved one when they no longer recognise you? This makes my blood boil, but I have always been polite in my response. Your loved ones recognise you until their last breath, but it might be in the form of touching your hand, a smile or an expression, but they know. I have no doubts that Dad knew I was present.

Those last two weeks of his life were so emotionally gruelling, but I never wanted them to end, as I knew what that would mean. And I knew my heart would never be ready for life without my hero.

Five days before my dad passed away, one of the lovely nurses told me to go to the garden for some fresh air. As I sat talking to one of the lovely residents, I suddenly thought I had to return to Dad’s room. When I walked in, he had stopped breathing. I then went into pure panic. I ran to get the nurse and she told me that it was sadly time. My stupid asthma got the better of me and threw me into an attack. As I was sat on my mattress with a carer cuddling me, my dad regained his breathing. The nurse told me that Dad was worried about me and came back. This is so Dad. He would have gone peacefully on that Monday, had it not been for his pathetic daughter’s breathing! I have read about these experiences where people come back, but to witness it for myself was a different matter. The nurse told me it happens often.

My dad then held on for another five days. It was such a traumatic day and the nurse, Katy, was just amazing. We could not have got through that day without her. I will be grateful to her forever and she is a friend for life.

It was a hard task telling my mum that Dad had passed away. I could not be more proud of Clive, Hattie and Louis. Mum had really missed me whilst I was staying in Silverleigh, so there was a relief that I was home again. This was hard for me to listen to, so I took myself out of the room a few times. As I have said before, I am grateful that Mum’s own dementia masks the pain of losing my dad. But I never considered how her matter-of-fact manner would crush me so deeply. But, again, it is dementia doing the talking.

During my fortnight’s stay in Silverleigh, I built up a great friendship with one of the residents. My dad would have loved him as he has a great sense of humour. Right opposite Dad’s room was a lift. This man would spend ages in the lift, talking to his friend in the mirror! When I needed to boost the tired spirit, I would hunt him down and we’d share some really funny moments. One of my lovely colleagues, Sam, dropped some Haagen-Dazs into Silverleigh for me. On a couple of mornings, I sat in my pyjamas in the beautiful garden, having an ice-cream with him. He loves ice-cream so much! And carries spoons in his pocket just in case! I miss him and I will visit him, once I am strong enough to return to Silverleigh.

On the day of the funeral, I was so proud of Mum. It was difficult for her as she did not recognise family she had not seen for a while. She dealt with the day so brilliantly. As we were leaving Escot House; the venue for the wake, she grabbed my arm and shouted really loudly, “Bye everyone!” I looked at my friend, Pete, and I dissolved into laughter! She was done and needed everyone to go home. Dad would have found this so funny.

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Doing my best to keep some semblance of strength is currently no mean feat. It does not take a lot for me to dissolve into tears. Does this make me sound pathetic? Probably. Do I care? Probably not. The dementia journey takes the wind out of your sails and leaves you struggling to maintain your buoyancy. This is definitely where I find myself today.

My dad’s situation is breaking me. His daily purpose was to make others laugh. He was so gregarious and full of life. Now, he is a fragile, broken man sick of life.

The most gentle person, Dad would never have hurt anyone. As the demon, that is dementia, twists the knife in further, my dad hits his head in a bid to make the pain go away. He hits out at others too.

Before a meeting this week, I sat and read accounts of Dad’s violent outbursts. It was a harrowing read. My dad always had the biggest heart and would go out of his way to help others; but here I was reading how carers were being hurt by my dad. This evil disease of the brain is a monster. It tangles wires and it destroys dignity. This demonic disease devastates lives. I hate it.

After the meeting, my dad was brought in so the mental health practitioner could observe him. Fortunately, she was the same practitioner that had dealt with Dad when he had first been diagnosed with dementia four years ago. I could see she was physically shocked at just how much he had deteriorated. He was seated beside me and I held his hand. He didn’t let go of my hand for the entire time. He has no knowledge of who I am anymore, but I don’t doubt his heart knows. I was then left alone with Dad and I just didn’t want that moment of him holding my hand to end.

As I walked back up to school, I did my best to put on a brave face, but my thoughts were preoccupied… My dad is so fragile and weak; now has little interest in food. He is fading away so quickly, yet has the strength to hurt himself and others. It absolutely breaks my heart.

Whilst I feel bereft every day of my life with Dad’s situation, I have to be grateful that Mum’s dementia is currently kinder. Yes, her needs are changing and her memory is deteriorating, but she remains happy. I cannot wish for more than that. I live in hope that she will be blissfully unaware of her brain’s deterioration. Mum’s smile means the world to me, when my dad is sadly not granted that privilege.

My cherished friend, Jan, passed away last month and I miss her so much. She was full of wisdom. She was such a special soul and I was so lucky to call her a friend for thirty years. I keep re-reading messages that she had sent me. She knew I would do this and I love her so much for it. One thing Jan always taught me was to kick arse in moments of strength and allow tears when that strength was missing in action.

As always, I will end my blog with humour. Regardless of how sad and exhausting challenging times can be, there are always smiles to be found.

As Clive and I arrived at the crematorium for Jan’s funeral, we were both already choking back the tears. My husband has always been really fond of his Hush Puppies. He has had them for twenty-eight years. He bought them for our wedding day. They only see daylight on wedding days or funerals and have never been allowed to be replaced. As he stepped out of the car in his beloved faithfuls, the sole of one of them began to detach itself from the shoe. As he walked, he was doing all he could in a desperate bid to keep it attached. He then began to drag his leg to disguise the gaping sole. I was absolutely mortified, whilst he was telling me to not “make a fuss!” As we were approaching the entrance hall, I could not bear it any longer. The man was dragging one leg! I spoke to one of the funeral director’s team and asked if she had anything to help with the sticky situation. She went into the office and moments later returned explaining that providing glue was against health and safety regulations. My expression was clearly enough – my husband immediately shuffled into the office and assured the man that he would not make a claim if he was overcome by the fumes of a strong adhesive! He was promptly given a can of glue and was directed to spray it discreetly away from the office door.

As we approached Jan’s husband, Mike, and her daughter, Nic, we had to explain and it momentarily made us all laugh. I know this was the work of our beautiful Jan. She would have laughed so much at this! As I was sat beside Clive, overcome with grief and strong adhesive, I knew Jan was laughing at Clive baring his sole that day.

Unfortunately, the Hush Puppies saga did not end there. As both our children came to see us that evening, following an emotional day, Clive showed our babies his beloved shoes. He was so pleased with the free repair. I’m embarrassed to admit that my Hattie and Louis completely let me down, when they both agreed the shoes were now good to go for a few more years! With that, I grabbed the sole and ripped it off completely. Although, I have to say it took some doing as it really was some impressive glue!

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Your heart knows who we are,

Yet, we are strangers to your troubled brain.

Once the life and soul of any room,

Now, you sit – lost, bewildered, broken.

Effervescence replaced with confusion,

Cruelly, fear gathers momentum.

A life dedicated to others, laughter surrounded you,

Today, there is no warmth from old memories.

The fire wreaks havoc inside your head,

But leaves you lost, cold, isolated.

On a good day, you look like my dad,

Olive skin and sparkly eyes of green.

But the good days are sadly lost in the mire,

Fear and confusion consumes you.

Laughter was food for your soul,

Now, the quietest noise creates despair.

Once familiar voices – now exhausting din,

Peace in a turbulent world is all you cling to.

The impressive brain was admired,

Your creativity was endless.

Mischievously, searching for the next smile,

That brain is now the nemesis.

Dementia; the devil of diseases, takes no prisoners,

It torments like the ugliest of storms,

It leaves tears and desperation in its wake.

Dad, you made me strong,

But my shoulders feel weak.

I hold on to the memories cruelly taken from you,

They navigate me through the difficult days.

Your unconditional love kept me grounded,

You celebrated quirks, encouraged them to flourish.

Grateful for the memories, and yet I am broken, bereft,

I miss you, Dad. So much.

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It is World Mental Health Day tomorrow. I have a real problem with all these international days of awareness; they should be respected every day of our lives. Especially mental health. It works in harmony with physical health; if one of them is off balance, then our whole being is a little bit buggered.

I know my own mental health is taking a nosedive right now and is most definitely having a profound effect on my body. I have always been guilty of going above and beyond in every aspect of my life. Now I know it is beginning to catch up on me and take its toll.

Today, my sister is paying my mum a visit. Regardless of the fact that she only lives forty minutes away from her, she has not visited for four months. I wouldn’t normally write about my sister in this blog, but I am sick of holding my emotions back about things that make me so angry. Yes, my brother tragically died from cancer as a child. But, despite this tragedy, my parents gave my sister and I the happiest childhood. I have spent my whole life being loved by my incredible parents. We both have. When my sister said that she couldn’t “cope” following my dad’s stroke three years ago, that was the day I had to give up on her. During these last few years, I have had no choice but to cope! I know it was a pathetic excuse to simply opt out. I can never forgive her for this. Never.

Therefore, today I have one day to sit back and not visit Mum. One day!

The last few weeks have been incredibly traumatic for Mum. She fell down the stairs and broke her wrist. This fall has had a huge impact on her dementia and I am seeing a real acceleration in her memory loss. The doctor says this is very common following a bad fall. Suddenly, it feels that my mum’s needs are changing so rapidly. She also has to have an urgent operation on her bowel next month. My usually strong and robust human Duracell is now showing real vulnerability, and I must admit this has been a real shock to the system.

There are no positives to be drawn from the journey with dementia. The days are heartbreaking and harrowing. The one thing I am currently holding onto is the fact that my mum’s fragility has meant that she is so loving towards me. It is absolutely bizarre, but as I am losing more and more of her, she is showing her old warmth that she had previously lost six years ago when dementia slowly took hold. She tells me she loves me. She tells me that she misses me when I am work. She tells me that she is grateful for eveything that I do. I am relishing these moments of warmth and reminders of my old, familiar mum. So, as I am witnessing more and more decline, I am comforted by the love she is showing me.

During a recent hospital appointment to discuss Mum’s imminent operation, the consultant started telling me about her own parents. As my mum sat there completely oblivious to the conversation, the consultant and I were discussing how looking after our parents is the highest of honours. This woman was my kind of woman! And I know Mum will be in safe hands during surgery next month.

Right now, my insomnia is being an absolute bastard. I wake up in the early hours of the night, making mental notes of all the things I need to do. We’re in the process of buying her a bungalow and I am petrified that an operation and a house move are both going to have a detrimental effect on her mental health. I know new surroundings will be impactive on her dementia. But my GP’s words, “Your mum’s safety and your sanity, Sophie,” will keep reminding me that moving her is the right thing to do. I just bloody wish my gorgeous, but stubborn parents listened a few years ago when I told them they needed a bungalow! I keep telling myself that it will be fine moving an eighty-one-year-old woman with dementia, broken wrist and recovering from a bowel operation….. And then 3am appears, and says ‘Soph, are you fucking mad?!’

This week has broken me. The one thing I need to know is, whilst I am work, my mum is getting the best care. This has not been the case and the last couple of weeks have been a bumpy and exhausting ride. Monthly care bills do not come cheap and incompetence is just not acceptable. I am sick of having to shout to be heard. But shouting is exactly what I have had to do this week.

As I have said in previous blogs, dementia is the cruellest goodbye. It is the devil of diseases. I know, for a fact, that dementia has stolen a part of me, not just my parents. I am lost without them both. Yes, I am lucky they are both still alive, when others have sadly lost their parents, but I lost my mum and dad the minute dementia tightened its grip.

I am hoping that a visit to my dad tomorrow will lift my current mood. I never have any expectations when I go to see him. Expectations only set you up to fail. I always go with an open mind. If he is in a sad place; it is an emotional visit. If he has been trekking around “the north of England,” I indulge myself in his happy bubble of unawareness.

I miss my dad so much. Right now, I could really benefit from his wisdom. I am constantly asking myself what Dad would do in my position. I hope I am making all the right choices? He has always been my effervescent and eccentric teacher of life and I am completely lost without him. But all the decisions I am currently making are in Mum’s best interest, so I have just got to keep moving forward.

Regardless of my flat mood, I cannot end my blog on a low note… Thank goodness for my human Duracell. My mum never swears. She used to keep a swear jar on the piano, and I filled that thing up like nobody’s business!! (Come to think of it, I was probably single-handedly funding our family holidays!) Last week, I was complaining that it was going to be pissing it down on Thursday. Her reply, “Soph, which day will it be pissing it down?” made me howl with laughter!

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There is nothing quite like a pandemic to test our personal strength and indulge in the exploration of coping strategies. My coping mechanism has always been my sense of humour, but this seems to be currently missing in action. I must admit, I am pretty lost without it.

During this pandemic, I keep refraining from writing my blog for fear of it appearing self-absorbed; we are all facing challenging times of emotional turmoil. However, I began this blog three years ago to help myself on the journey with my parents’ dementias. Tonight, as my spirit is low, I need the therapy of my writing. I trust this cathartic process as it allows my tumultuous emotions some order.

Prior to covid, I was afforded the luxury of visiting my dad most days after work. His nursing home being in the same town as the school I work at made this possible. Like so many others, visiting has been completely out of the question due to covid. This isolation from those whose tomorrows are not promised is, at times, unbearable. Whilst we all understand the need to protect our most vulnerable citizens of society, it brings insurmountable heartache.

The Government’s announcement of allowing visitors back into care homes was absolute music to my ears. The thought of seeing Dad again lifted the low spirit. However, last Thursday, I suddenly realised that I had to decide who that one family member would be. I totally understand that the homes need to limit the amount of people entering, but I had failed to realise I would have to choose a designated person. It has to Mum, why wouldn’t it be? I would give anything to see my dad right now, but I know it has to be Mum. I know so many families are in the same boat; it is such a heart-wrenching decision. The last time I saw Dad was in November and I know he has deteriorated significantly since then.

So, after work tomorrow, I will be taking my mum to see Dad and I am hoping to get a window view. The words ‘window view’ just sum up the completely surreal times right now don’t they? We are all missing our favourite people and we will happily grab any opportunity to see their faces through a window. As I say, it is all so surreal.

With a low mood which will not seem to shift, I phoned the home this morning to speak to Dad. He was really sleepy and kept repeating my name in an echolalic fashion. I am now so used to him doing this. It doesn’t matter what he says, I just gain comfort from the sound of his voice. He then muttered something about the IRA, then abandoned the phone! Bless him.

Every day I feel bereft of time with Dad. Every day I feel guilty that I could be doing more for Mum. I know I do all I can to keep my mum safe, but in my eyes it will never be enough. Guilt is such a destructive emotion. My counsellor is really patient with me and I know I am a work in progress. Right now, I feel the journey to self-acceptance is a little bumpy. I have such an unhealthy relationship with myself. I never know when I am at the end of my tether until it is too late. By then, I have ignored all the warning signs and exhaustion. My nervous energy remains wired, whilst my physical energy stores are completely depleted. Hyperactivity is a fucking pain in the arse. I am sick of being the whirlwind, I would happily settle for being a gentle, placid breeze!

I do not know where I would be without my husband right now. He puts up with all my childish outbursts and my tears. He lives a life of sufferance, the poor bugger. He allows me to be the overgrown child when life is just too much and I cannot cope with the pressures of adulthood! I know he often wishes that our adult babies did not fly the nest, as he has to deal with his third and problem child alone now! I wish they had not flown the nest too! I dream of a solitary covid bunker with all my brood.

I am so anxious about going back to school next week. Mum has been so much calmer knowing that I am working from home. Again, the guilt weighs heavily. I know being back with the students will have a positive impact on my mental health, but I also know it will be met with some turbulence from the mothership. Buckle up, Sophster!

A former runner, I used to clock eleven miles daily. Now, due to asthma and the demands of life, my running shoes sit in the garage gathering dust. However, this week I have felt like I’ve been doing daily marathons towards the edge of a precipice.

I knew my dad’s eightieth birthday was going to be tough on the old emotions; distraction was key in getting through that day. I have always rushed through life – my parents blamed this on my forceps delivery! They used to tell me that the “Southampton flying squad” had to make their way to Emsworth to get me out quickly. I’ve certainly been running ever since. On Monday, I spent much of the school day avoiding any adult interaction and throwing myself into the students. Must admit, I think I really champion avoidance tactics! I am so lucky to work with the best team. They all know how the stupid Sophster rolls and they know to not ask me how I am. I love them all for this. I would rather be called a dickhead than be asked how I’m feeling.

Due to a covid outbreak at my dad’s home, I was unable to visit him, so had a Skype call instead. Fortunately, a member of staff phoned me prior to the video call to warn me of Dad’s sharp decline. It was a bitter pill to swallow, but it prepared me for the imminent contact with him. My daughter was on the call from her house and I was sat with my mum, staring at a completely broken man. Dementia is tightening its cruel grip. The two members of staff were incredible and they were doing everything to lift a sad situation. They were opening Dad’s cards and making funny comments. I kept looking at my daughter’s face, trying to gain some strength, but I couldn’t stop my tears. Dad started to hit his head and my heart was broken. My mum was totally unaffected by the whole experience. She was looking through my Christmas cards, rather than looking at the screen. I think I am actually grateful that she is now unable to concentrate, as it would be heartbreaking to see Mum upset by seeing Dad this way.

On Dad’s painful journey with dementia, all I’ve ever hoped for is to see him happy in his own little world. There are residents at his home who are in this bubble of euphoria. My dad is locked in a very troubled world. It absolutely breaks me to see this. I crave that happy bubble of bliss for him. I’ve been told that he’s becoming very sleepy and more confused. I’ve been losing my Dad slowly and painfully since 12th June 2018; the grieving never stops. Dementia really is the longest goodbye. I try my best to not dwell on the fact that covid has put distance between us and has stolen borrowed time. The fact remains that it has done just that, but dwelling on it is so detrimental to my well-being.

My parents’ dementias are poles apart. My mum is not troubled. I have got to be grateful for this. She is exhausting at times, but she is not troubled.

One thing I am becoming increasingly irritated by, is people telling me that Mum is “quite with it” on the phone. She is anything but with it. Before Dad’s stroke, she relied on him so much. He was her prop. He was forever masking her dementia and hiding her forgetfulness. She now has to deal with people on her own and has learnt to pretend that she knows what they’re talking about. If they spent more than ten minutes in her company, they’d soon realise that she asks the same questions on repeat!

I have learnt, along the way, that when someone is given a diagnosis of dementia, it really does show who your true people are. My parents have had such great friends over the years, but the mention of a dementia diagnosis and some of their friendships, that have stood the test of time, have disintegrated. There is such a stigma attached to this disease and some people would sooner turn their backs, than offer support and compassion. I have to say, this makes me so fucking angry! Why is dementia such a taboo subject? It affects so many families and people need to be better educated about this sad and debilitating disease.

As always, I’ll end this blog on a cheerier note. My mum’s Maths has always been phenomenal. (Sadly, this was not passed down to me… the numbers just do not add up!) Her dementia seems to be exacerbating her obsession with numbers. She might not be able to remember people, but you ask her what the pressure on her boiler is and she’ll tell you! Pretty useless information, but impressive nonetheless. Even if it does mean constant calls to me, “Soph, the boiler’s dropping pressure again!”

Happy Christmas to you all and I wish you all a healthy 2021. Xxxxxxxxxxxxx

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I have resisted the urge to write my blog for the last few months as it felt a bit self-absorbed to do so. Especially when the world is gripped with so much worry right now. We are all adjusting to a restricted life at the hands of this destructive virus. However, after talking to a lovely colleague the other day (thank you Tracy xx), I realised my blog is my therapy. Whether people choose to read it is up to them. It has always been a cathartic process for me, so here I am.

Restricted visits to my dad has meant that I have lost precious moments with him. Prior to covid-19, I was able to see Dad almost every day. Now, I am very much at the mercy of this pandemic (as we all are) and I cannot help but feel bereft of time with him. Dementia is tightening its grip on my hero and I am rendered powerless to its devastation. Do I feel broken? Yes, I feel incredibly broken and exhausted right now.

I have spent my life being in awe of Dad’s incredible brain. Both he and Mum were grammar school educated and Dad was even a year above his age, with older children. Today, both these incredible brains are a mess of tangled wires and disconnections. Dementia really is the devil of diseases.

When I had my children, I naively thought that I would know all the answers to their inquisitive enquiries! How wrong was I! My dad always had the answer to my many questions, or if not, he had a book that did. Quickly, with motherhood I realised that ‘Dial-a-Grandad’ would be an invaluable tool in raising my babies. Louis’ questions would always be thought-provoking; Hattie’s would be a little more random.. such as ‘is there any animal in the world which survives entirely on a diet of their own poo?!’ Dial-a-Grandad was always on hand for every line of questioning. Words cannot convey just how much I miss my dad’s presence in my life.

Visiting Dad this week was such an emotional ordeal. I was so excited to see him, but incredibly apprehensive, as I felt sick that he would not recognise me. My fears were realised when he wandered off and said “Goodbye. Who are you again?” Nothing can prepare you for the day that your loved one no longer recognises you. I have felt so low since seeing him and unable to pick myself up. Yes, I am aware that he might recognise me the next time I see him, but the pain from the most recent visit is immense.

Dementia is an unbelievably cruel, relentlessly exhausting disease. Many people say that it is harder for the family than the individual suffering from this debilitation, but I totally disagree. It is heartbreaking for both parties in equal measures. My dad always looks so troubled. The day he had been banging his head against a wall and said to me, “I can’t cope with my brain, Soph” will haunt me forever. Furthermore, my mum is frequently saying things like, “My stupid brain.” Both my parents are aware of their deterioration and I do not think anyone can imagine the sheer magnitude of the anxiety dementia causes until they are suffering from it themselves.

My dad was still private tutoring until the April before his stroke in July 2018. He was seventy-seven but still helping children with their English and Maths. One particular day, he told me that he had been playing football with a pupil after a tuition and he fell over in the goal and did not feel good. That was the day he decided to retire from private tuition. I often think that was his brain warning him that all was not well. He and Mum then had a holiday in Zakynthos and he told me how he was out swimming in the sea and his head suddenly felt odd, so he had to swim back to shore. Two days after their return from Greece, I was sat in a ambulance blue-lighting it to hospital with my dad fighting for his life. I know that his body had been sending him warnings that something was amiss. I will be eternally grateful that he did not have the stroke in Greece, or worse still, on the aeroplane.

My mum continues to test my endurance. However, she does make me smile, All her eccentricities are exacerbated by her dementia, which can really brighten a day! For her recent eightieth birthday, we bought her a sheep cushion. She has always loved animals, but she has developed a real fondness for all things sheep related! Last week, we discovered that she had defaced the cushion with “Lucy Lamb!” She now talks to ‘Lucy’ all the time, it is really quiet sweet.

The war on Mum’s heating has begun again. The beautiful summer we have had has given us a welcome reprieve from ‘mission thermostat!’ Now we are enduring endless phone calls about the heating “doing strange things!” My mum repeatedly goes to the airing cupboard and turns down the temperature of the boiler, then complains that she is cold. The trouble is that she cannot remember that she does this! I have been tempted to put a camera in there to film her doing it, just for the hell of it.

Last week, I bought her two new pairs of trousers. By the time I got home from work, she had cut both the waistbands to make them more comfortable. When I suggested we could have got a bigger size instead of customising the lovely new trousers, she absolutely berated me, “Soph, I will NOT go up a size, no way!”

Recently, Mum was watching an online funeral of a friend of hers. As Clive and I were sat with her, she suddenly said, “Here he is, he’s coming through the door now!” I must admit we both had to look at the screen to make sure he wasn’t walking into his own funeral!

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Lockdown is certainly making us adapt to new ways of existence. Parenting by telephone seems the most obvious topic of my discussion…

“Mum, you are posting way too much on Facebook. Remember less is more!”

Wise words from my daughter. I am so used to Hattie and Louis parenting me in person, now that it has to happen over the telephone is really challenging. I miss them both so much and cannot wait until I can hug them again.

So, whilst I’m coming to terms with this new ‘normal’, I’m also having to adapt to this new process with my mum. Parenting her by telephone is virtually impossible! For the last five years, she has been difficult to parent in person, however, it is even more problematic now I have to do it at a distance. On Friday, she phoned me to say that she had been down to town. Down to town?! During a bloody lockdown? Bloody marvellous! It is fair to say that I lost my rag. (She was clever to tell me after the event). It was definitely a premeditated rebellion because when she phoned to tell me, she started with, “Soph, I know you’ll be cross……” Cross was an understatement! What was so important that she couldn’t wait for my daughter or my husband to run an errand for her? She apparently needed ten stamps, this month’s prescription and some cards for birthdays in May. Now she has done it once, I just know she will do it again. I have my sources, of which I am really grateful, so I know that she went into at least four shops. That bloody woman! I know it wasn’t just stamps she was buying. I can put money on the fact that she came home with some chewing gum and dog biscuits for a dog she does not even have!

Shock tactics are the only way to deal with my mum’s dementia at times. She is so rebellious and determined. After the trip to town revelation, I knew the only way to stop her doing it again was to scare her. Telling Mum that she could die if she got COVID-19 was not an easy discussion. It was met with, “Soph, stop worrying, you’re being ridiculous!” My mum is driving me to alcohol! I quickly changed tack and told her that she could receive a fixed penalty for breaking the rules…”Can you defend me, Soph, if that happens?” Bloody give me strength woman!

My mum used to say that raising me made her unshockable… How the tides have turned! It takes me back to when I got my first tattoo. Hoping that Mum would hate it, she told me it was, “actually rather artistic!” That was not the response I was hoping for! It certainly now feels like I am parenting a seventy-nine year old teenager.

Dad is constantly in my thoughts. I know that I am missing vital time with him. The staff at his nursing home are just incredible. After a Skype call to Dad the other day, a member of staff then asked me how I was and gave time to listen to how difficult it was for me to see him on a screen. The staff are dealing with cases of COVID-19 and their residents’ dementia, yet still ask how a family member is, following a call to a relative. I am in awe of this home and its magic, I feel so grateful to have Dad there. Unbelievably grateful.

Ricky Gervais has always been someone I have admired. His scriptwriting is so unique. Watching the new series of ‘After Life’ has had me crying, laughing and then crying some more. He successfully marries pathos with comedy to create compelling viewing. As I sit and watch it with my hubby, I often wonder if it’s a little too close to home. When he goes to visit his dad, I’m just sat in a state of reflection and tears. However, I continue to watch as I know that Ricky Gervais is helping many of us deal with the inevitable.

Right, need to wrap this blog up. Where there’s life, there’s humour. Mum is constantly talking about her Marmite on crackers and how it helps control her type 2 diabetes! The other day I asked her if she’d had her Marmite on crackers?…

“Soph, what is your obsession with Marmite? You’re always talking about it!”

Am I really, Mum, am I really?!

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Invisible threat reigns terror in our world,

How long it lay dormant? A secret untold.

It builds momentum like a cruel, raging fire,

A monster of terror that just does not tire.

A microscopic, yet deadly, threat to us all,

Insatiable appetite, it does not stall.

 

 

Isolation and boundaries bring troubled hearts,

Devastating families right from the start.

As we live our new ‘normal’ our hearts all break,

We hope it is not real each time we awake.

We cling onto our spirit and live in hope,

Our spirit, a power that helps us to cope.

 

 

Our heroes on the front-line… We are in awe,

Dedication to duty, pride in them all.

Risk their lives to save others – selfless hearts unite,

We give huge gratitude as they keep up their fight.

 

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