New to Carers UK

New to Carers Connect
1

Hi, all.

I’m Jools. I’ve been caring for my mum for the last few years. She is currently undergoing tests for dementia, which took a while to organize given her reluctance, denial, and the added bonus of the pandemic! The last few months have been trying, to say the least, and I’ve been close to breaking point a couple of times. We used to travel a lot, and mum’s struggled being housebound so much. Until I get a diagnosis (fingers crossed it’s this week), I can’t move forward with meds, or even a rough timeline, so I have an idea in my head where she’s at with the illness. I’ve a fair idea, though, and it’s heartbreaking to see her in distress. Then I get pissed off because I can’t get through to her that there aren’t any children in the house, the television and bookcases aren’t trying to steal her stuff, and feel guilty for getting irritated.
I’ve never felt so trapped, and that makes me feel guilty, because caring for someone is about them, not me.
I have a brother and a sister, but they are, at best, unreliable.
I bit the bullet a few weeks ago and booked myself a holiday in 2022 to Croatia. By then I think mum won’t be living with me, as she’s regressing fairly steadily now, and I’ll arrange respite care.
I don’t know how to deal with some of her moods. Answering the same question over and over isn’t too bad, but when the aggressive tone starts to kick in, I struggle not to bite back.
Are there any tips for distracting someone who sees people that don’t exist, and gets frustrated when i can’t see those people? I’ve tried various things. Puzzle books. Walks. Documentaries with animals. Sitting and talking to her. But I have to work, too. I work from home, and try to fix a routine that works for both of us. It sometimes works.
She refuses to have another sitter, which puts a lot of pressure on me, but fortunately her sleep patterns have, for the most part, settled, and I manage a few hours each night.
Sorry to rant. I guess I needed to purge.
Thank you to organizations like Carers UK (and Versus Arthritis who’ve helped me work through my ailments). Forums like these are a lifeline to so many. xx Jools xx

2

Hi Julia & welcome

You are carrying to much on your own. Have you and Mum had a needs assessment.
https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/needs-assessment
https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/carers-assessment
If not there needs to be one. It’s not the be and end all but can help in certain circumstances.
Are you linked to a local carers group.
https://www.carersuk.org/help-and-advice/get-support/local-support
If not you may find there are like minded people.
I know you say Mum refuses to have anyone else to help. But in the longer term this will not be practical. The more changes in people in the longer term Mum gets used to is for the better. If Mum were in a care home which as you say might happen. There will be many different carers.

Is Mum in receipt of attendance allowance

3

Hi Jools

I wanted to wish you a warm welcome to the forum and to highlight some of the options for connecting with fellow carers and for getting support from Carers UK.

Carers UK are running online weekly meet ups for carers to take some time for themselves and chat to other carers. Feel free to join if you’d like to and there’s no pressure to share anything you don’t want to.

You can find information on how to register to our online meetups at the following pages:

Care for a Cuppa: https://www.carersuk.org/help-and-advice/get-support/online-meetups- the next online meet up is this Wednesday (9 June, 17.00-18.00). This social is a great way to have a little break if you are able to and spend some quality time talking to people who understand what you are going through right now.

Share and Learn: https://www.carersuk.org/help-and-advice/get-support/share-and-learn-online-sessions- these sessions range from creative writing activities to beginners Latin dance sessions.

There is also Carers UK’s helpline should you need advice or support - Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org)

Carers UK also provide information and guidance to unpaid carers. This covers a range of subjects including:

Benefits and financial support
Your rights as a carer in the workplace
Carers’ assessments and how to get support in your caring role
Services available to carers and the people you care for
How to complain effectively and challenge decisions.

4

It is NOT up to mum to choose whether or not to have a sitter!
It’s YOUR choice when you are or are not going to care for her!
She doesn’t control anything, she has now lost the capacity to make valid decisions.

5

Hi Jools,

I wonder how you’re getting on now as it’s a few months since you posted? I’m George (new around here) and my mum was diagnosed with Alzheimers at the begining of the pandemic - which has definately led to some of your challenges that I’m sure I can resonate with.

I hope you have a diagnosis now - it sounds as though it may dementia with lewys bodies or Lewys body dementia. One of my colleagues’ mothers was diagnosed with it.

Anyway, I wanted to let you know that alot of what you wrote really struck a chord with me -

I get pissed off too because I can’t get through to my mum (although she’s not having hallucinations - just very poor reasoning skills) I feel guilty for getting irritated as the rational part of my brain knows it’s not her fault. I also find it really hard that when I phone to check in to see how she is I’m usually greated with ’ what do you want’ or ‘will you be on the phone long?’ There’s rarely any questions about me or my life - I’m effectively losing my mum.

I’ve never felt so useless as I live about 120 miles away from her, am CEV and her partner will not isolate, so seeing her (without her isolating for 5 days 1st) is too much of a personal risk to me. She’s not wiulling or able to carry out a lateral flow test, so visiting feels like Covid roulette!

I’ve also never felt so trapped as my plans for a better life (immigrating etc are indefinately on ice), and that makes me more angry about this situation as I’ve spent the last 20 years thinking about, planning for & setting myself up for being able to be foot loose and fancy free in the next 5 years - not anymore.

I have a sister, who is in Australia and yes, like yours is at best, unreliable (mum is often asking me to get her to call and is dissapointed by the fact she’s not calling often - once a month max). I find the thankless task of helping my mum draining and all the barriers + red tape faced while doing so - although mum has moments of lucidity where she can’t thank me enough for all I am doing. Which then makes me feel really guilty - as she doesn’t need to thank me - although there isn’t anyone else to help, so I have become the defacto adult / parent in the relationship - something I never wanted for myself.

I find answering the same questions or having the same conversations / discussions over and over really tough sometimes and not biting can be hard. I just tend to try & agree with her about things or try and have a little joke now - no point in pointing out that she’s wrong / we’ve discussed this before etc ect, but with medical stuff I have to keep reminding her so she doesn’t keep asking for the same tests from the doctors again. Her GP’s are not involving me in her care (formal complaint now raised) and it all feels like a massive uphill struggle which is in addition to my own health issues, working and now getting ready to pack up and move closer as I can’t live this far away for too much longer. My relationship with my partner is also now breaking down as a result of the stress and pressure I feel under and I’m not sleeping well, which is turn is impacting on work! Arrrrrrrrrrrgh.

I think it’s obvious from my rant that I’m struggling and so have taken the first step in getting some support by joining in here, and I hope you are getting some support from here - or wherever you can get it from!

Anyway, it was nice to hear your thoughts and I hope you are ok?

Take care,

George