A week of self-reflection… Mirror, Mirror…

Slowly, I am learning, on this journey with my parents, that you really do know when you’ve been given the best advice. People will offer their opinion, or life experiences, but it might not always resonate with you. Everybody’s view is different and that’s okay. I’m learning to listen when I feel my heart kick in, as I know this is the advice that is teaching me coping mechanisms.

Last week, my Aunty Livvy told my parents that she and Uncle Brian were travelling down from Surrey to visit them. Although not family, I’ve always called them Aunty and Uncle. Aunty Livvy had met my Dad at Teacher Training College, many moons ago. They’ve been friends ever since. It suddenly occurred to me that Aunty Livvy did not know the real picture, regarding my parents. She was relying on false information, fed to her from my Mum. I thought it best to ring her to explain the situation. She didn’t seem at all surprised. She had guessed something was amiss when my Mum had phoned her, last July, to tell her Dad had fallen down the stairs. (Yes, he did fall down the stairs, but only as a result of a major stroke on the landing). Aunty Livvy said that she’d guessed Mum was being over positive and playing down a serious situation. I will never forget her words to me last week, “Sophie, we are all in our late seventies and have lived good lives. You must not put your life on hold for this. You, Clive and your children matter too.” My close friends will tell you that guilt is an emotion I feel most intensely. Guilt is an ugly and destructive emotion. I never want to feel guilty for thinking I could have done more for my parents. They’ve had to live through the sadness of losing my brother, Sacha, to cancer. But they’d be the first to say they’ve had a good life. I’m a firm believer that when people are dealt cruel cards in life, they make the most positive and generous people, as they know to appreciate the good times. This is so true of my Mum and Dad.

At risk of repeating myself from earlier blogs, I cannot shake the sadness I feel with my Dad’s situation. I’m trying, but I’m struggling with it. My Dad was always life and soul of the party. Constantly making sure people were smiling. My frail Dad, today, makes me feel sad. I really have accepted Mum’s deterioration, as I’ve had a few years to deal with it.

During these last 11 months, I really have had to grow up. My Dad was Mum’s unofficial Carer until that day, last July, when life took a new turn. Dementia has the potential to cause so much devastation to families. But I’m slowly beginning to realise that my Dad, my hero, would only ever want his daughter to be the mad March hare she has always been. I’m desperately trying to hold on to this. My hubby has put up with me for 33 years, and has always referred to me as his “third, and problem child.” I need to get back to being this stupid person. She’s my familiar. I know that my Dad would be the first person to say that his situation should not change me. When he lived through his Mum having Dementia, I never lost my Dad, his humour, his effervescence.

I know I did the right thing returning to work in January. It has given me back my identity. I didn’t realise how much I’d missed the job, until I was back in my role. Work offers me distraction, and I make sure I keep my day as busy and focussed as possible. However, this week of school holiday has allowed me to see just how much my Dad has deteriorated since January. Having spent so much time with him last year, I was able to see changes. Now I’m back at work, I don’t always see the changes, due to busy life and distractions. It’s fair to say, that this week has really opened my eyes to the extent of his deterioration.

On Thursday, my Mum had a hair appointment for a cut and colour. I knew I had at least two and a half hours with my Dad, on my own. These times are so precious to me. I’ve learnt to love cutting his hair. It’s the one moment that nobody can steal from us. Through the Alzheimer’s society, I’d arranged for the fire service to come and do a safety check on their house. When the man arrived, I was still cutting Dad’s hair. I asked him if he minded if I carry on whilst he checked the house. He asked me if I could cut his hair afterwards. No chance!! Haha! The visit just offered me a little more peace of mind, in terms of their surroundings. (Although, I’ll still worry).

Lynsey is my parents’ new cleaner and she has quickly become a treasured visitor to my parents’ house. I’m so grateful for all she does. She was also there that morning. My Dad is so relaxed in her company, it’s lovely to see. Recently, my Dad really wasn’t himself whilst she was there. He’d been crying to her and saying he didn’t feel well. Without Lynsey being there, my Mum would not have contacted me, as she would have been unconcerned. Dad is very vulnerable under Mum’s fragile watch. ┬áDad had asked Lynsey to ring the surgery and “ring Soph, as she’d know what to do.” Lynsey phoned my school, and my lovely boss sent me home. She was right, Dad was really not good. I suspected a TIA. After a visit to the Doctor, they said it could have been a TIA or just complete exhaustion. I’m so grateful for people in my parents’ lives. Lynsey is most definitely one of these people xxx

After the man from the fire service and Lynsey had gone, my Dad began to fret about Mum. He was so anxious. He was putting on his coat and trying to leave the house. Eventually, I had to drive him down to the salon, so he could see where Mum was. On the way down, he opened the car door and tried to get out. These moments are scary, as he cannot see danger. I quickly found a car space, and walked him to the salon. Once he saw Mum, his whole persona changed. He slumped in the chair and just watched, silently, as she had her hair dried. It was this moment that I realised that although it’s so important for Dad to have space from Mum to rest, it’s also important to accept that, after 55 years of marriage, they need to be together. (Regardless of Mum’s energy being detrimental to Dad’s health). My daughter’s words that night… “I think this shows us how important it is that we keep them together, despite it being bad for Dandan’s wellbeing” really did ring true to me. Hopes of day care for Dad may be too optimistic, when they’re bound together so tightly.

A good friend, Grace, sent me a quote saying “If you stress too much about something before it happens, you basically put yourself through it twice.” I’m sure others will identify with this. Why put ourselves through it? Why stress over the future, when the present is here to be appreciated?

Again, as always, I make sure I find humour where I can. Now my Mum is 78, she has decided to become a ‘silver surfer!’ … “Soph, can you order me an iPad?!” … Oh dear! Bugs, Hats, Lou, Al and I are all dreading being asked to teach my Mum how to use the Internet! With all the verbal abuse she gives me, it certainly won’t be yours truly!! If I ever receive a friend request from my Mum, I vow to a life of Faceache abstinence!!

My firstborn suggested I upcycle a mirror in my living room. Within half an hour of her suggestion, I’d dragged my hubby to a shop to choose chalk paint. This mirror has become a running joke Chez Madhouse. I’ve painted it, stripped it, painted it another colour, stripped it. Painted it another colour … From this, it is clear that I’m unable to make life changing decisions! I have, however, developed a close relationship with my electric sander! Rosie, my son’s girlfriend, said I’ve got to pay homage to my mirror in this ramble. Haha!… Mirror, mirror, on the wall, oh how perfect you were before. Bugger off Hats! ­čśë xxx

One of my parents’ Carers left yesterday. She happened to be their favourite. Such a lovely person. She’s going to be a psychiatric nurse. As she took Mum on their last shopping trip together yesterday, I was hoping my Mum would buy her a leaving gift. When they both arrived home to Dad and I, I spotted the red gerberas that Mum had bought. I’d hoped they were for the Carer. As she left, Mum handed her a bag of tangerines! Oh dear! Pour me that gin!

 

 

 

 

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Quandaries, manipulation and fruit squash.

Generally, I remain determined to not let my Parents’ Dementia break me. However, on the occasional day, this determination does not seem prevalent at all, and my mental strength feels defeated. Today is certainly one of those days. This defeatism just isn’t me and I struggle to accept myself when I feel this way. But maybe we’re allowed the odd day where we feel we cannot cope with the situation thrown in our path? It’s one thing to accept circumstances (at least, acceptance to the best of your ability), but remaining positive is not always as easy.

For the last two weeks, I have become increasingly concerned about my Dad. This concern has been exacerbated by the heartfelt conversations that I’ve had with him. During the last fortnight, he has repeatedly said “I’m not sure if home is the best place for me.” As a daughter of a devoted couple, who have been married for 56 years, this is hard to hear. Furthermore, it’s a definite awareness, on Dad’s part, of just how unwell he is. It’s a contradiction of sorts, he is one extremely confused man, however, during these conversations, he has an awareness that his surroundings are no longer suitable for his needs.

All I see in my Dad, is an exhausted man, trying his best to keep his wife happy, by trying to keep up with her. It’s an impossible situation. I understand that Dementia, and all its complexities, means that two cases will never present themselves in the same way. However, my Parents’ illnesses could not be any more dissimilar. My Dad is lethargic, needing regular naps throughout the day. My Mum, on the other hand, needs letting off her lead for regular runs in the park!! Her energy levels put me to shame. Her heightened energy is relentless. I am convinced that she’s powered by Duracell! These different needs just aren’t compatible. Unfortunately, for my Dad, their life fits around Mum’s needs. This is so detrimental to his health, as he’s exhausted and weak. As I said, it’s bloody impossible to meet both their complex needs.

On Sunday, Dad brought up the subject of needing a rest again. Luckily, Hats and Al were there to witness it too. He was saying how he just wanted to go to a place where he wouldn’t need to worry about anything. He finds daily life such an effort now, but still continues to carry out simple tasks to keep the peace. He let slip that if he doesn’t lay the table properly for breakfast, he’ll get “shouted at!” I can’t begin to say how this infuriates me! My Mum has a tangled brain too, yet she shouts at him for forgetting to put the bloody Muesli on the table?!!! The daily pressure for Dad to carry out habitual routines is so wearing for him. I suggested that I ring the home where he had respite last September to see if they could offer daycare for him. Dad was happy with this suggestion. Mum hardly spoke… The calm before the storm! She will not ever verbally attack me in front of Al or Bugsy, for some reason, therefore, as Al was there, she remained quiet!

Yesterday, after work, I managed to contact the home and it was agreed that Dad go this Friday for the day. I felt so relieved, as I know he needs this rest and break from Mum. I was hoping it could gradually be built up to several days a week. This would allow Dad a proper break and reduce the demands from Mum.

Last night, my Mum phoned and was shouting at me. Telling me how Dad won’t be going there on Friday. She had managed to manipulate Dad into thinking it would be a bad idea to go to the home for the day. She was vile, and during a weak moment, I told her that I didn’t like her very much these days. The things she was saying were making me cry. I eventually had to hang up on her, as it was just too painful to listen. This is the most emotionally gruelling part of my Mum’s Dementia. She is so far removed from the person who has been the most amazing, loving, Mum all my life. The old Mum was completely selfless, always putting others before herself. If I ever needed a cry, my Mum would be the person I would run to. Now, she is the reason for my tears. I love my Mum. I hate her Dementia. It makes her cruel and shout at those closest to her. Although her brain is tangled, she is so strong, confident and feisty. Whereas, Dad has no confidence whatsoever. My old Dad was the extrovert and got such a kick out of making people laugh. These days, it breaks my heart to see him broken. The other day he said “I’m so thick.” My son-in-law, Al, said “Derek, you’re the most intelligent person I’ve ever met.” I couldn’t look at Al, his words melted my heart and I had tears in eyes. My Dad had an amazing brain. I was so proud of him. He was a fantastic Dad, Headmaster and role model. I hate that Dementia has stolen his sunshine.

Regardless of this blog being cathartic to my low mood tonight, I’m not leaving it here. Where there’s life, there’s humour….

As Bugs, Hats, Lou, Al, Rosie and I were at my Parents’ last weekend, my Mum was criticising Theresa May… That’s fine, I completely agree with her… However, none of us were ready for her showstopping comment… “She needs to stand down and let a man take over! We need a man back in power!” What an opinion! Especially coming from Mrs Forthright Duracell! I wanted to go home and immediately burn my bras… Not that I have much need for them… I’ll burn Hats’ bras instead!

Bugsy then caught my lovely Dad making himself a drink…. Orange squash, followed by fruit squash, undiluted. Syrup in a glass basically! Cocktail anyone? Hello diabetes!! ┬á­čÖé xxxxxxxx

 

 

 

Significant Seafront.

A few people have asked me why I’ve not blogged recently. Only reason is that I’ve been throwing myself into spending quality time with my family, during the Easter holidays. My Superwoman, Bonnie, said she was missing my rambles… So, Bonnie, this one is for you. (I just have to say how you continue to dazzle me with your tenacity xxxxxxxxx).

This morning, Mum and I had an appointment with the Mental Health Team. It was to discuss Mum’s diagnosis. When I arrived at my Parents’, Mum had got Dad ready to come along too. (Last night, I’d told her that I felt it better that Dad stay at home). Once again, Mum ignored this and insisted Dad tag along. One thing I’m really trying to do throughout this journey, is focus on the funny you can find in a situation. Fortunately for me, my Mum provides humour by the bucket load! As we were sat in the waiting area, Mum proceeded to pick up a leaflet for Dad to read. “I should have brought a newspaper for you to read, Derek, but have a look at some leaflets instead.” This particular leaflet was Devon Domestic Violence Support Service!!!!! Haha! When I pointed this out to her, she just shrugged her shoulders and said “Oh well, it’s only something Dad can look at whilst we wait!” In these situations, I can’t help but store it in my memory bank for future moments, when I can’t see the funny in life, and need a pick-me-up.

Shortly after, we were called called into a room and met a lovely lady from The Dementia Society. She was really patient, and was talking through Mum’s diagnosis. Most of the time, my Mum kept interjecting that she’s great at Crosswords! Marvellous! Think she quickly got the full measure of the Mothership! I really warmed to this woman’s approach. She was informative, yet diplomatic. Often, I’ve come across people who talk to the family members, not the person with Dementia. This is not okay! They’re still here, they still need eye contact and respect, regardless of the fact it may not be reciprocated. This woman was amazing and she’s now our ‘Go-to’ for any advice and help.

She provided a great analogy about our memory being like a bookshelf. From birth onwards, our emotional memories are huge books which sit on the bottom of the bookshelf. The smaller books are functional skills. As we get older, the top shelf of functional skills can be ignored. This can then result in more recent habitual routines being forgotten. People can sometimes take themselves back to a time when routines were very different. For example, when they used to put a kettle on a stove… Therefore, when an┬áelectric kettle is dangerously placed┬áon a hob, they’ve forgotten more recent habitual routines. This analogy really resonates with me, especially with regard to my Dad. He’ll often find the most simple processes so impossible to master. Routines that he has carried out for many years, without having to think about, will often be met with a childlike approach.

She also went on to explain how it’s likely that 1 in 3 people will develop Dementia in their later life. These are certainly high statistics! Stress and anxiety obviously being huge, contributory factors. Sorry, a tad depressing for the Crazy Catlady blog! I’ll lighten the mood…

A week ago, I went to see Linda, Hat and Lou’s very first Teacher at Primary school. We’ve kept in contact, but I felt awful that I’d not been to see her for a few years. So, I dropped my Golden Oldies to Seaton seafront and I went to see her. We walked from her home to the beach, where we saw my Parents. They were sat on a bench with an elderly lady. Linda and I approached them and Mum began to introduce this woman to us … “This is ….. Umm this is …… This is …..This is……” Mum was clearly waiting for Dad to save her, but he didn’t have the foggiest either!! Luckily, the lady took the cue and said “Joan!” Linda and I were doing our utmost to stifle a giggle. We were grateful to ‘Joan’ for the help! I then asked Dad if he wanted an ice-cream (Yes, like Father, like Daughter!). Mum then asked Joan if she’d like one too!!! I’ve never met Joan in my life, yet I’m buying her a 99??!!

I’ve had a few funny memories on the Seaton seafront. I might have mentioned this occasion in an earlier blog, but I’m not apologising for repeating myself! I used to take Russ out once a week when I was an Enabler. I never saw him as work, just two people going out and being crazy together. Next month, it will be three years since we lost him, and I have to say that he’s prevalent in my thoughts daily. This one particular day, we’d decided to head to Seaton for ice-cream (funny that!). I needed a quick wee, so I left Russ on a bench and went into the public toilets. When I came out, Russ was in deep conversation with this elderly lady. As I approached them, he said “Here she is, this is Soph!” I just took it that Russ knew this woman, so I sat with them and we chatted to her for ages. As we left, I asked Russ who she was…. “Not a clue, Soph!” We laughed the whole way to the Ice-cream kiosk! That chance meeting would have made that lady’s day. She absolutely loved talking to him. Everyone always did.

When Hat and Lou were little, Bugs was working on a hot day in August, so I took the kids to Seaton for the day. Lou must have been about two years old, as I was potty training him at the time. I was taking pics of my two little cherubs, paddling and giggling together in the sea. When all of a sudden, Hats shouts “Lou-Lou has just said poo-poo, Mummy! And it’s coming out!!” Suffice to say, I think everyone on that beach knew that my son had dropped a weapon of mass destruction on the East Devon coastline that day!

These past 9 months, since my Dad’s stroke, have certainly opened my eyes. To have both Parents with Dementia is no picnic, but I really have learnt to appreciate the good times. Yes, we all have sadness in our lives, but I think it’s important to choose to sift through the crap to find the moments that bring a smile to your face. Hats and Al moved into a new place last weekend. They’ve now adopted Al’s family’s beautiful, ginger Tomcats, Dougal and Dylan. When Dad met Dyl, he said “what a lovely doggy!” … My Mum then agreed with him and said “He really is isn’t he!” As we were sat in Hats’ new living-room, Dad looked at me and said “Have your Parents been here yet, Soph?!”….

There most definitely is never a dull moment with my Golden Oldies!!

 

The Mothership’s hidden talent…

 

Returning to work full-time has been really good for my own mental well-being. Although, I have found it exhausting, balancing it with Parents etc. Most importantly, it has given me another focus and distraction from the Golden Oldies and their situation. It’s now a question of rebuilding my confidence in my ability, this has definitely taken a nosedive during the last 8 months.

Dad has now been home from hospital for 2 weeks. He has Carers coming in everyday. They are fantastic and the office keeps me in the loop all the time. I cannot praise them enough. We have had a few teething troubles, but that is mainly down to Mum and her difficulty to accept changes.

On the second day, post hospital discharge, Mum told me that she’d had Dad “pruning the shrubs.” I’m totally convinced she enjoys seeing me lose my rag with her! Dad was allowed hospital discharge, after a 5 week stay, on the proviso that care was put in place and that he wouldn’t venture out beyond their patio, due to risk of falls. The Occupational Therapist had made a home visit and ascertained that Dad must stay within the confines of the patio area. Hearing that Mum had encouraged my poor Dad to do some gardening, literally made my blood boil! Must admit, I’ve tried lots of psychology on Mum, most of it to no avail. So I find it easier to just be blunt with her. I told her I was going to ring the OT and get her to come back out to speak to Mum. This was met with a barrage of abuse. Mum’s words “You don’t care about your poor Dad! You’re so mean!” hit me like a ton of bricks. Honestly, I feel I’ve devoted the last 8 months of my life entirely to looking after both my Parents. When a Parent, or Parents, have dementia, you really do have to continue to tell yourself that it’s the confused brain that is talking.

Mum behaves like a spoilt child a lot of the time. If she doesn’t get her own way, she says hurtful things. (Quite surprised she wasn’t at the recent Oscars, for her pretend tears, which quickly change to anger and manipulation). It’s incredibly hard getting to know this new part of her, as it’s so far removed from the person she was. My amazing friend, and confidant, Gini, told me that I wouldn’t have given in to Hats and Lou’s demands when they were children. So why allow my Mum to manipulate me this way? This advice has really helped me. When Mum has me in a corner and I feel compromised, I no longer feel guilty for defending myself and sticking to my guns.

As I’ve probably said in earlier blogs, it’s hard to see your Parents as anything other than your familiar foundations you’ve spent your entire life respecting. Dad needs much more support, they are both vulnerable, however, I’d argue that Dad is more so. The decline in his health has been much more rapid, and far more difficult for me to accept.

I received a text from Mum today, to say she’d cut Dad’s hair… Oh shit! 16 years ago, when Hats was 7 years old, my Mum had decided to cut her fringe, whilst she and Lou were staying at theirs one Saturday night. As they brought our kids back to our house, I couldn’t believe the state of my daughter’s hair!! It transpired that Mum had cut her fringe with nail scissors!!!!!! Why?? I remember being bloody furious that she’d taken it upon herself to hack my daughter’s hair! That haircut was pre Dementia, so the odds weren’t in Dad’s favour!

Hat and Al were not going to miss out, so they accompanied us to see the mullet! Poor Dad looked bloody awful! She had apparently used kitchen scissors and an electric razor… ┬áTo be honest, I’m just relieved she hadn’t severed an artery! I then spent the next half an hour cutting Dad’s hair, with Mum continually lambasting me and calling me “fussy!” She really is the gift that keeps on giving!

Mum has always loved men with long, thick hair… When Bill Roache, from Corrie, was accused of rape, Mum famously said “He’s got lovely, thick hair though!” She may have been Grammar school educated, but Mum has always lacked common sense! I think any Offender, with thick hair, would be ecstatic to have Mum on the jury…

 

 

 

Trousers.

My Hubby has always considered me his third and problem child… I have always hoped that he sees this as a term of endearment? I miss that person so much. I feel so weighed down with everything right now. I want to be that stupid, familiar and eccentric ball of energy, instead of this exhausted mess.

Last Wednesday, a Doctor visited Mum and I at my Parents’ house. She gave us the results of Mum’s CT scan and memory test. The diagnosis of Vascular Dementia was no surprise. However, hearing it from a Professional is a different matter. For the last three years, I’ve learnt to accept that my Mum has changed. Obviously, since my Dad’s stroke last July, I’ve had to battle to get tests and a CT scan for her. Sadly, help is not given without formal diagnosis. As I read the post-diagnosis letter on Saturday, I felt relieved that finally a care package would be provided for Mum. The Doctor had put “I fear Sophie will soon be suffering from Carer burnout.” Truth is, I’ve been feeling this burnout for a few months now.

Today, I was called to a meeting with Dad’s Doctor at the hospital. Again, I was under no illusion that Dad will miraculously improve. The Doctor began by asking me how Dad had been during the last year, prior to his stroke. Apart from Dad giving up private tuition last April, the only difference I had seen in him was exhaustion dealing with Mum. As I was sat there this morning, I knew what was coming next. The Doctor had examined Dad’s most recent CT scan, and confirmed that Dad has Vascular Dementia.

Six days between my Parents’ diagnoses. Must admit, this is a bitter pill to swallow right now. Again, being a realist, I had already told myself that Dad is now in the throes of dementia… But there’s nothing like confirmation to bring it home. The Doctor gave me so much time. This was appreciated, as I had so many questions. He told me that both my Parents’ diagnoses will allow care packages to be put in place.

My Dad has deteriorated so significantly during these last six weeks. When I arrived at the hospital this morning, he was fast asleep in a chair. As I sat on the arm of the chair, and stroked his arm, he woke up. He recognises me, but his conversations are so muddled. Today, he was back to being a Headmaster, he was telling me how the kids took ages to arrive in school this morning. Last week, I must have received over ten calls from the hospital asking me if I could speak to Dad. He was convinced I was a very little Soph, (probably about five years old), and he was anxious that I’d gone missing. The Nurses said that once he had heard my voice on the other end, he relaxed quite quickly, knowing I was safe.

Dementia is a destructive, devastating and damaging disease. It is so impactive on the whole family. I wish I had known that Dad would become so poorly, so quickly. I would have seized the day, when he was well, and told him what an amazing impact he had had on my life. Now, all I can do is be there, hold his hand and try and keep him calm when life is just too muddled. Anyone going through a similar experience with a family member, will know just how heartbreaking and overwhelming this is.

My Mum is a lot stronger than Dad, her deterioration is a gradual process. I should be grateful for this at least. However, she refuses to believe her own diagnosis, let alone her Husband’s. Cowardly, I’m leaving it to the Doctor to explain to her about Dad. Sadly, she’ll listen more if it comes from him.

Again, I’ll try and lighten this heavy blog. Life has been all about the trousers for Dad lately. After my meeting with the Doctor this morning, I went into Dad’s room to find him trying to put his grey joggers over his head. My Mum had been determined to not give in to our demands to buy him some jogging bottoms to make life easier. She was adamant that Dad will only be seen in his familiar cords or jeans! Two weeks ago, a Nurse asked me if we could buy him a couple of pairs… Yippee! Annoyingly, a suggestion from staff carries more clout than our words of advice! Mum has now embraced the joggers, and allowed me to buy him four pairs. She has even bought some other trousers that she saw advertised in the newspaper… So my Dad is now the proud owner of a pair of All-weather biker trousers, suitable for a 6 ft man… Perfect for my little Dad, at 5 ft 5, with no immediate plans to hop on a Harley-Davidson!

Test of strength.

When I was advised to start this blog last summer, I promised myself I would be completely honest about my emotions on this difficult journey with my Parents. I’ve always been a ‘glass is half full’ kind of person, always able to draw positives from situations. However, lately I have felt that this has been chipped away.

On Wednesday, our cousin Bonnie was told, after surgery, that her liver is doing everything to destroy her. The worst news. I felt guilty for being absolutely floored by this, as how the hell must she be feeling? Then Clive and I learnt that a friend from school, Tom, has been told that his cancer is beating his fight. Both Tom and Bonnie have fought their battles with the most inspiring tenacity. Tom, throughout his battle, has been running marathons and raising thousands for Bowel Cancer. Bonnie has shown the same determination in her fight. Never giving in, tirelessly courageous. Both in their forties, and both with young children. This news hits hard.

Although I’m not usually a fan of hers, I stumbled on an interview with Sarah Cox. She said “I’ve hit a sweet spot in my 40’s… My kids are more independent, my parents are in good health and my career’s going great.” It left a real impression on me. It was lovely that she was voicing her gratitude for how life is for her right now. We really should appreciate and cherish the good times, instead of chasing our tails. Life gives no warning when it’s about to be turned on its head.

I was told late last summer that I was grieving for both my parents. I feel this everyday. I miss my old parents so much, they were such loving, generous souls, who ┬ánever took life for granted. On Friday, when Mum and I arrived at the hospital, the Staff Nurse asked if she could talk to us before we saw Dad. As we were taken into a quiet room, I felt sick. I knew it wasn’t going to be good news. As she was telling us how poorly he had been over the last 24 hours, I was sat, frozen to the spot. It’s at times like that when I really miss the reassurance or a warm hug from my parents. They have always been so big on hugs and telling me how much they loved me. As I was sat with Mum, she was struggling to understand the information and I was having to explain it to her… Knowing that I would have to repeat the information again later.

Dad had continued to fall, so was now on 24 hour watch, with a Nurse in his room at all times. His mobility and eating had changed dramatically, leading them to believe he’s likely to have suffered a further stroke. Friday’s visit was an emotionally challenging one. Dad didn’t recognise us, couldn’t do anything for himself and was making no sense. He’s due to have a CT scan this week, to ascertain what has happened.

Since Friday, his mobility has improved, but his confusion has not altered. Yesterday, as I was stood directly in front of Dad, the Nurse said “Derek, Sophie’s here.” He couldn’t actually see me until I was holding him. As Hats, Mum and Bugsy were sat in his room with him, I had a meeting with the staff nurse. She explained that he was ┬ádisplaying more dementia traits now that the mania wasn’t so prevalent. I knew that, in my heart, but clarity can be hard to hear.

My Mum has a Doctor making a home visit to her next Wednesday, with results from her own CT scan. I am fully aware that both my 78 year old parents are unwell, however, I don’t know why I’m so petrified of formal diagnosis. I keep telling myself to wear my big girl pants, but inside I feel like a child desperately trying to cling onto my familiar.

Having Mum at our house everyday is exhausting. But the alternative is too much for me to deal with it… I hate to think of her, at home, alone. It breaks my heart. I miss simple things, like watching a film with my Hubby, eating cookie dough ice-cream. (I know Ben & Jerry have probably noticed a dent in their profit margins as a result!). When you’re looking after a parent with Dementia, it takes its toll on marriage and family life.

Talk about woe is me! Warned you that I had become a miserable bitch! So I’m going to add an anecdote to hopefully lift the mood of this blog…

Last week, at school, I was trying to get my head around El Dino and La Ni├▒a… I got an A in GCSE Geography, not that it’s of any help these days! (Thank you Molly Fricker, you were scary, but an amazing Teacher!). I learnt all about Urbanisation and Tertiary Industries, not El Dino events! Never heard of them!┬áSo, as I’m trying to get my head around this fluctuation in the Earth’s climate system, in order to impart my wisdom (cough cough) to a couple of year 11 students, I’m trying my best to break it down. As the 44 year old’s cogs begin to move and knowledge is sinking in, I speak before I think. (Something I’m infamous for in my family). So, as Mrs V begins to explain that El Dino is the boy, who makes everything dry and causes drought, La Ni├▒a is the girl, who makes everything wet… Cue the two kids stifling laughter, and Mrs V repeating her daughter’s words in her head … “Mum, don’t say anymore, you’ll make it even worse!” Haha! Bring back rural settlements, I say!

 

 

 

 

 

Crisis point… Points!

I already feel like we’ve reached crisis point on several occasions during the last week…

On Monday night, my Mum phoned me in tears. Dad had got out the house. So I drove around looking for him. When I finally found him, he did not recognise me and it was a struggle to get him into the car. He was in a manic state. Completely confused, completely irrational. I had the difficult task of trying to convince him that I was his Daughter. He was a lost man, walking the streets, proving, in no uncertain terms, that he was completely vulnerable and a risk to himself. I then spent time with him and Mum at their house, doing everything to calm the situation. Knowing that the following morning I would need to get help.

After work on Tuesday afternoon, I met the Mental Health Practitioner at my Parents’ home. After an hour’s chat with us, she concluded that Dad was not yet in a state of full blown mania, but hypomania. Bullshit!!!! I don’t have a degree in mental health practises, but what I do have is experience of mental health within the family. Luckily, my Dad has only ever had one episode of mania prior to this. ┬áI might have just been an 11 year old child at the time, but the experience will never be forgotten. This Mental Health Practitioner, in essence, was saying that Dad was not yet poorly enough for admission! … Or the cynical part of me would suggest that she couldn’t afford herself the time to start the ball rolling. My Mum has always been reticent about her life. She has never been a person to ask for help, she’d always be the person to throw herself into others’ difficult times and help them. To hear my Mum say that she couldn’t cope with Dad’s behaviour was totally indicative of the complete exhaustion she has been feeling. Again, my Mum’s own deterioration was really not being considered by our Practitioner.

On Wednesday morning, I’d been at school for half an hour, when I got a hysterical call from Mum. Dad had been in a horrific state, awake most the night, and had got out the house. Hearing Mum crying and knowing I was 20 minutes away from the situation felt unbearable. Once again, my work were really empathetic and I raced home. On the journey back, I rang the Police to start a missing person action plan. I then spent the rest of the journey ranting to the Mental Health Practitioner, telling her I was not prepared to wait for a horrific incident before I was heard. An hour later, my Dad was found and the Police brought him back to the house. The 3 Officers were more use to me than the Mental Health Team had been for the past 2 difficult weeks. They all appreciated my Dad needed hospital admission.

The same Mental Health Practitioner arrived shortly after the Police had left. She could not get any sense out of my Dad and agreed he was manic… But still no hospital admission!! So, my Dad was put on anti-psychotics from that afternoon. Anti-psychotics are extremely risky for a patient who’s suffered a stroke. His 78 years also increased his risks of side effects, including bad spatial awareness and the possibility of falls. ┬áMarvellous! So, as my Dad was still moving at 100 mph, in an elated state, my nerves were completely frazzled.

The anti-psychotic drugs had the paradoxical effect, and simply exacerbated his mania. Sunday morning, at 2am, my Mum phoned us in a horrific state. My Dad was shouting in the background. Bugs and I got straight around there to see my Dad in a very scary state of mania. He was suffering from the worst hallucinations and was convinced that people were in the house. It was terrifying to witness. The house was a mess. Neighbours’ lights were on. I rang the Crisis Team, and an ambulance was an hour away, but making its way to us. At this stage, my poor Dad was talking to people in the room (there were no people, apart from Mum, Bugs and myself). My Dad has always been amazing at speaking French, and he was speaking, in French, to one of the people he saw. He then began to speak German. I didn’t think his German was quite as good, but he proved me otherwise on this occasion. It was the most weird and scary experience to see. He didn’t know who my Mum, my hubby or I were. As he was pacing back and forth across the living room, I was watching thinking what a tremendous strain mania must have on a person’s body and brain. Especially a person, post stroke, who’s body and brain is already damaged. The body and brain, at that point, cannot slow down, everything is working at the most horrific speed. My husband then decided it was too dangerous to wait for the ambulance. So we left Mum to try and sleep, phoned to cancel the ambulance, and drove him into hospital ourselves.

Luckily, we were given a room really quickly, where staff monitored Dad’s blood pressure, took blood etc. My Dad spoke to Clive and I, non-stop, it was exhausting. Eventually, at 8.30am, 2 Mental Health Practitioners arrived at the room. I can’t begin to say how amazing they were. Completely empathetic to the situation, and desperate to get my Dad admitted to a secure unit as soon as was possible. We had to now wait for 2 Psychiatric Doctors and a Social Worker to come and assess him. One of the Practitioners told my hubby and I to go home and try and sleep. Reluctantly, Bugs managed to persuade me to do this. We were assured that Dad would be monitored. No sooner had we got home, we had a phone call from one of Bugsy’s ex-colleagues to say he’d just caught Dad trying to leave the A&E building!! We couldn’t believe how lucky we’d been that Ian just happened to be going into A&E himself. He found out where Dad was meant to be, and escorted him back to his room. Cue Clive and I tearing back to the hospital! The ward were really apologetic that he’d been able to get out and walk towards the exit… I’m not even going to imagine how it could have been without the lovely Ian being in the right place, right time xxxxxx

Finally, at 4.30pm, my Dad was assessed by the team of 3. Again, these people were so proactive and very supportive of Clive and my efforts. My poor Dad was still talking nonsense at great speeds. By this time, he’d been awake for 47 hours. They could not establish capacity, so Dad was sectioned under the Mental Health Act, he’ll now be in a secure unit for the next 28 days. As I sat in the ambulance with him on the way to the hospital in another part of Exeter, I just couldn’t believe what we’d had to go through to get him help.

As I watched my husband helping my Dad into his pyjamas in his new room, I just felt so completely drained. It had been a huge battle to get Dad help, and why? Why does a family need to be at the end of their tether to be heard?

I don’t know how I would have coped without my Bugsy yesterday. 18 hours in hospital with a person suffering from mania is no picnic. I love my Bugsy so much. It was as upsetting for him as it was me. We met when we were 12, so he didn’t see my Dad poorly the previous year.

As we left the hospital, my Dad was walking around asking for “Mary.” It was totally heartbreaking. He looked so lost, so fragile and so vulnerable. I have to admit that I cried the whole way home; Tears I’d kept in the whole, long night/day. Tears of relief that we’d finally got Dad to a place of help. Tears of guilt, that we’d separated him from Mum. Tears of just complete exhaustion.

Our daughter, Hattie, had looked after Mum and taken her for sea air yesterday. We got home at 8.30pm to homemade lasagne, made by Hats. She literally is our angel on Earth xxxxxxx My Mum, in her own fragile state, struggled to make any sense of what had been happening over the last 2 weeks. Poor thing, such an ordeal for her. It was such a relief yesterday that Hats was taking care of her. So grateful for my hubby and children.

Today, my Dad is being assessed by the Dr in the unit. Apart from the fact that he’s still in a manic state, he’s also suffering with total lack of spatial awareness. Yesterday he was stumbling, his left side was weak and his right arm was trembling. It could also be that he’s suffered a second stroke.

Again, I write this blog as a therapy. I’m hoping to look back on this shitty chapter of our life one day and know it made me grow as a person!