Sadness.

I often question whether my blog is too detailed. I know my private husband certainly agrees it is. But I’m trying not to analyse my need to do this and just roll with it. I would like to hope that someone reading this is being comforted by the fact they’re not alone in their difficult stage of life. It’s inevitable our parents will get old. It’s inevitable the roles will be reversed. It’s also inevitable that this will be such an emotionally loaded experience for all concerned.

I’m afraid today’s blog offers no humour, I see the funny in life, there was no funny in life yesterday. So if you need uplifting, it won’t be from my blog, sorry xxx

As I started the day yesterday, I could sense that my parents’ situation was about to escalate. I feel very attuned to my Dad right now. I have this with my husband too. My daughter finds it hilarious when her Dad will say “that man reminds me of someone”….. I’ll then reply that he looks nothing like him (At this point, I’ve named the person that my hubby is talking about). This happens a lot, and I know Hats finds it amusing. I think it just comes from the fact that my hubby and I have been together since we were 12, so we’re bound to have picked up some sort of ESP (extrasensory perception) on our journey through to adulthood…… I’m still very much on this journey, I’ve not reached my destination just yet.

With this feeling of uneasiness, as I walked my Evie around to my parents, I decided to give our Key worker a call. (I cannot stress how important it is to get Adult Services on board, if you find yourself in a situation that is not exactly straightforward. Making the initial call to Social Services is not easy, but when your family are given a designated person to help, it’s a great support). I always start the conversation to our Key worker by apologising to her for the call. She always tells me off for saying sorry and reminds me it’s her job. She’s an Aries and just seems to get me, I’m so grateful for this. I explained my uneasiness about things. I also discussed the fact that I’m feeling so torn between being there for my parents and letting my school colleagues down, not to mention the children. I just needed to hear “family first” for clarity. I’ve never known exhaustion like this, so, right now, I’ve got to channel my limited energy into my parents.

After ending the call and arriving at my parents, I saw a very teary-eyed, exhausted Dad. I knew my uneasiness was justified. The atmosphere was heavy. I’d told my Mum that I would drop her into town to do some shopping, then I’d go back and be with my Dad. As she went upstairs to get herself ready, Dad said to me “Last night was hard, so difficult.” He said that my Mum had begun shouting at him about his confusion. She apparently wouldn’t stop. Watching as my Dad spoke, my heart was breaking before me. I love my Mum so much, but this behaviour I do not like. My Dad asked if he could live with me (he has said this a few times lately). My stomach was churning. I know found myself in a safeguarding situation. My mobile went and it was our Key Worker phoning with some ideas. I took the call upstairs to their spare room and told her that the situation had escalated. She’s very much a sounding board for me, I’ll be on the phone, thrashing my thoughts about. If Dad stays at ours, I then have to balance this with looking after Mum. I can’t leave Dad on his own. How can I be in two places at once? There’s only one me. It feels very much like the fox, chicken and corn scenario, who do you take across the river first?? Our Key worker mentioned Respite…

Respite for a couple who have been inseparable for 55 years of marriage? They’ve been joined at the hip all their married life, and now in their final chapter of life, they need space from each other. This absolutely breaks me. They’re usually a united force to be reckoned with. But now they need separating? This crushes me, it absolutely does.

On our way to town, I asked Mum how their evening had been. She said it had been “fine” and that Dad had managed to enjoy some television. When I questioned her further, she did say that he’d been quite confused at bedtime. When I asked her how his confusion affects her at the end of a long day, she said “This is so hard for me, Dad gets so muddled. I’ve not had an easy couple of months.” My parents have never been the “poor me’s.” My Dad has always said that we should always ask ‘Why not me?’ As opposed to ‘Why me?’ He has always argued that whilst you don’t feel you should be suffering, why should someone else. What makes you so special? Again, this is something I live by, it’s very easy for people to wallow in the ‘why me?’ self-pity, but it doesn’t help them. I think the heartache of losing my brother, Sacha, to cancer, really did make my parents re-evaluate life and appreciate the good times and power through the bad. My Mum’s sudden self-pity was proof that she’s broken. It’s as hard for my Dad too. This double dose of damage to the brain is so sad, my parents have earned the right to a bit of self-pity.

When I got back to my Dad, we sat and chatted and he explained that Mum’s anger towards his muddled mind makes him really upset. I phoned the surgery and told the Receptionist I needed a chat with a GP (my parents’ GP is on annual leave). She said I’d be called sometime over the next hour, or so. I discussed the possibility of Respite to Dad. He seemed open to the idea, again consolidating the fact that he needed space from my Mum. Just in case anyone is ever in a similar position, respite is organised through Social Services. A week in a Residential home can cost between £600 – £800 per week’s stay. (I didn’t know this until yesterday, so I hope this helps someone in a similar position).

Mum phoned me to go and pick her up from town. As I was driving their car down, a GP phoned me. So I had to pull over to speak. I told him about my fears over my parents and my need to establish exactly what is going on in Mum’s head. It’s said she has beginnings of dementia, after 2 years, there is no beginning about it. I explained her aggression vs Dad’s fragility. The GP organised an appointment at 5pm that day to refer Mum for a brain scan and referral to the Mental Health team. Finally, I felt I was getting some clarity. A proper diagnosis will allow us to know how to deal with Mum. As I walked over to pick my Mum up. A lovely lady, Carol, stood there with open arms and said she knew I needed hug. I did not want to let this lovely person go, I was stood outside Boots, crying. I was so grateful for Carol and her generous heart. Talk about being in the right place, right time. Her hug gave me a boost to keep going. Such a lovely person xxx

The 5pm appointment came. As I was sat in the waiting room, I saw another familiar face, Liz. As I was sat with my Mum, I couldn’t really talk too much to Liz. But her expression when I first saw her, was a hug in an understanding smile. The GP asked Mum to explain Dad’s stroke to him. This is always telling, as Mum has never truly understood the extensive damage it caused to Dad’s brain. “Well, physically, Doctor, he’s doing marvellously. He has cleaned our little car today, without any problem.” (She’d asked him, whilst I wasn’t there, to clean bird poo off their car, which he did, but he was exhausted afterwards!). The GP explained that cleaning cars was probably too strenuous for Dad right now. He then explained that he and I had had a conversation earlier that day. He then did a complete U-turn and decided against the brain scan referral!!!! He decided to try her on a tablet to see if this could calm down her levels of anxiety…………… At this point, I wanted to jump off the surgery roof! Talk about frustrations!!! Dad’s best friend, Tony, always tells me that if I’m not heard, shout a little louder…. I’m going to shout today!!!!

Whilst waiting for these ridiculous tablets, I saw another lovely lady, Helen. She too gave me a hug. I know some lovely people and I’m truly grateful for this xxx

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2 thoughts on “Sadness.

  1. So glad you’re writing this out, Soph. It’s the exhausting reality of a truly Catch-22 situation. I was jumping off the surgery roof with you, by the end. I know GPs have a difficult job, but I wish they were taught how to properly seen the bigger picture – to have suggested referring your Mum and then backtracking does not help you and, if he had been properly considering the situation, you are part of the ‘package’ that contains your parents separate issues and needs. Without you, different decisions would have to be made. I’m glad you have a Key worker – she needs to start shouting loudly with you to ensure you are not torn apart by this situation. Clinicians need to know that nothing can be confined neatly in a labelled ‘box’, however much they’d like it to be – the real world is a complicated, messy place where people and emotions and conditions interweave and overlap. The GP yesterday obviously didn’t understand this, otherwise he would have given your Mum meds AND referred her for a scan, knowing that it would help you make difficult decisions down the line. Shout loudly today, Soph – I’m shouting with you and also sending a wraparound hug to propel you through the day. xxxxxxxx G.

    Liked by 1 person

    1. Gini, you are an incredible support to me and I love you for it . Thank you so much xxxx Yes, it was very much a feeling of utter disbelief yesterday evening. I thought, during my earlier conversation with this GP, that he understood. After I’d explained that a family member will see the signs of dementia before anyone. He agreed and said “I couldn’t agree more, it’s the family who see the personality changes first.” My Mum has lost all her warmth and love during these last two years. I don’t need anymore than that to establish the fact she’s further on in this journey of dementia than the initial test suggests. I wish Doctors would listen more to the life experience of the patient and their family, as opposed to referring to textbook practices!!! Love and hugs to you, Graham and the Goddesses xxxxxxxxxxxx

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