I want to be open and honest, so here’s where I’m at ….

It’s good for me to write this as it’s cathartic …it helps me, but I hope that it also helps you to understand me, what I’m experiencing as a carer and why I think like I do.

Annoyingly, I often get upset when I speak because, believe it or not, I’m really exhausted. Most of all though, I don’t feel valued, respected or part of society anymore.

What I need most of all is people who I can talk to (and vent to). Someone who is still willing to support you when you have, for whatever reason, decided to be a full-time carer to the end (if I can, and if that’s what’s best for Mum. I might not always be the best person for her).

Please be positive and congratulate me on what I’m trying to do, not constantly tell me that I won’t be able to do it and I’m going to end up having a break down. Realise that it’s ok for people to not do what you suggest and follow your advice (just because it’s what most people do). Those people still need help, understanding and people they can reach out to. There shouldn’t be a “one size fits all” approach.

Ironically, I do realise that I need to have things in place in case I am unable to see it through to the end. This is why Mum now goes to a day centre a few times a week as I was finding it hard now that her dementia has progressed so much. It’s good for me to have a break but also good for Mum too (both when she’s there and when I pick her up as I’ve had a bit of headspace).

I wish that people would also realise that some carers (like me) do already have pre-existing mental health conditions which affects the decisions that you make for yourself. My intrusive thought OCD means that if I didn’t try and care for Mum, I would think that if something didn’t go according to plan, it was my fault. My GP told me that I needed to be looking after Mum as I wanted to, not because I would feel guilty if I didn’t (and then referred me for counselling). Not very helpful! I’ve had all the therapy going and that’s not how it works. This is who I am, and I must work hard every second of every day to keep on top of my mental health even if it looks as though I don’t. I’m good at putting on an act and a brave face although sometimes I let it slide.

People think that because I’m doing this, Mum and I had an amazing relationship before her dementia was diagnosed and that I don’t think anyone else is good enough to look after her. That’s not how it is. Mum did her best for me as I did for her, but we never lived in each other’s pockets. We hardly ever saw or spoke to each other, and when we did, sometimes we disagreed. I still love her and want the best for her though.

This doesn’t mean that I would wish for her some of the treatment that she has received from other care companies we have tried for her (that are in the Council’s directory). I know there are good people out there and anything is a partnership requiring you to work together. Everyone deserves to be treated as a human being with respect and dignity. As a result of my experiences though, I’m now cautious as well as just not having the strength to go through trying to find people who I trust and can do the jobs they are employed to do. I have found a small group of people who Mum and I are happy with. Unfortunately, people like this seem to be thin on the ground.

Over the last few weeks to get people off my back, I have agreed to follow people’s advice and talk to different professionals. It hasn’t helped to receive conflicting advice about the help that I could receive as a carer.

I know that I am lucky that my Husband has supported me to enable me to give up my career to care for Mum. He is in effect paying for my Mum’s care. We have calculated it would have cost Mum nearly half a million pounds. Why do people living with dementia that have savings have to pay a higher cost than people living with dementia funded by the Council? That’s fundamentally wrong. Over the last 5 years, I have given up earning potential income that far exceeds what I will inherit if I am able to stop Mum from losing her savings so that her Son, Daughter and Grandchildren can inherit part of what she wanted them to. Realistically I’m not stupid enough to think that this is a possibility anymore. She is already paying approx. £12,000 pa for the day care service. Don’t get me wrong, we are very grateful for attendance and carer’s allowance, but unfortunately this  doesn’t come anywhere near covering this cost.

I feel sad when people say that I should be trying to “get rid” of Mum’s savings or that I should be using them to help me. That is Mum’s money to be used for her benefit, not mine. I also feel sad that the Council are not able to fund a session at the day care service where Mum is already settled at and contribute £5 to my wellbeing so that I could go and do a yoga class which I know would help my mental health.

On a positive note, while Mum is at day care, I have been working to help other people and their families living with dementia. I have joined dementia research and have been working with the SUN network to help redesign the dementia pathway. The SUN network are amazing and really value people with lived experience.  I’m just about to help the hospice at Thorpe Hall look at end of life care for people living with dementia and I’ve also tried to play a big part in helping people to realise just how important the Dementia Resource Centre and dementia services in Peterborough are.

I do try and be useful 😊