Hello. I’m Tommy from Yorkshire. I’m 57, single and have been a carer for about the last 10 years. First for both my parents, just looking out for them. Then as time went by, my mum developed dementia and my dad had a developed a number of of health issues along with vascular dementia. I’d say for the last 7 years or things have been pretty difficult. Looking after both parents with very little help was hard and things with my dad got more and more challenging and demanding. My dad passed just over 3 years ago and I guess the anniversary has contributed to me struggling more than normal and joining this forum. For the past 3 years it’s just been me looking after my mum as she slowly fades. She’s 92 now and very frail and her dementia is quite advanced.
I’ve always found the stress and isolation and lonliness of caring hard. Sometimes very hard. This last week, although nothing has changed materially, I’m finding it overwhelming. Without coming over as melodramatic, I think I’ve had some kind of mental breakdown. That’s my reason for joining this community and posting here. I can’t afford to feel like this, I need to keep things together. But this last week I’ve not been sleeping, not been able to eat properly. Feel sick and my mind is racing all the time trying to get a sense of equilibrium back. Physically my mum is still easy for me to look after, touch wood. But it’s the mental side of things where I need to try and change something. The feeling of being so alone and trapped with my own thoughts. I was wondering whether anyone here know of anything like an online penpal scheme (showing my age) or places where you can just share a few messages with people in similar circumstances. Anything along those lines. I’d be very grateful for any suggestions.
Best wishes to everyone here caring for a loved one.
Hi Tommy, welcome to the forum. You have done too much for too long without enough practical help. I’ve met my breaking point after years and years of caring. Brain damaged son, disabled mum, all four parents living locally, then I had major cancer surgery, husband died suddenly, then I was disabled in a car accident. It’s time for you to stop being Superman and start yelling for Help! When did you last see your G P? When did Social Services write mum’s last Needs Assessment, and your last Carers Assessment? When did you last have a two week holiday? How are things financially? Did you know that people claiming Attendance Allowance with dementia can be exempt from Council Tax?
@Tombola welcome aboard! I absolutely agree with bowlingbun. We carers generally just keep our heads down and deal with our situation, carrying on without help because we don’t really expect it.
It’s no wonder that carers are exhausted, depressed, or struggling - and any combination of those you can think of. And it’s no wonder that you’re feeling the way you do. If your Mum is getting any support from social services, she probably needs more. If she isn’t getting any, she definitely needs some - and so do you. You need to contact social services and tell them you need help.
Welcome from me too. You do sound at breaking point and no wonder.
I agree asking SS for help. Do you have a local Carers group? They can sometimes help and may be able to provide a ‘befriender’ who can offer telephone support. Can your mother be left alone for a while or do you have to be there 24.7.? If you can get out alone, it may be worth while seeing if the Carers group have any meetings locally that you could get to? I totally agree that the isolation is very hard to cope with.
Please let us know how things go. Also if you are really feeling depressed and worried about sinking into clinical depression, could you get an appointment with your GP? They may be able to expedite SS involvement and help. YOU deserve a life too.
I wholeheartedly concur with @bowlingbun@Charlesh47 & @selinakylie that you need to reach out to your GP for yourself…I would say, before anything else you do. Personally I don’t think a penpal service will be enough to a positive difference to the situation, however if this one mini-step helps you to a larger step then use us here on the forum as you pen pals!!
When I was looking after Dad who had Vascular dementia - he had bladder cancer which destabilised his congestive heart failure and that in turn aggravated his dementia, …we were in a VERY VERY long hypervigilant state, listening out, no/limited sleep and many frequent paramedic calls…it was a extremely long endurance test and marathon with no light at the end of the tunnel…there were moments I had to stop myself in the day and do meditation or box breathing: Breathing exercises for stress - NHS
Literally we need to breathe - BUT I also arranged overnight care with the local hospice.
The worst thing for our brain is no sleep - thoughts, images and weird stuff happens
even if its only for 3-4 of the 6hours I got some sleep (even if not deep restorative sleep)
Bottom line hard fact here (sorry!) - Your Mum at the very ripe age of 92 has enjoyed 10+years of you caring for her & your Dad, please enable her most precious legacy which is YOU to continue on after her…you owe her that too! Here’s the hospice care finder: https://www.hospiceuk.org/hospice-care-finder
I would be surprised if the local charity-hospice who offer care, do NOT help you both at this point in your caring journey and considering her health status. This may be a faster route than via social services
I understand the dark days…and it’s worse as we enter literal wintery dark days…Be Brave and reach out to the hospice.
Hi @Tombola Tommy, and yes - Welcome! I feel like a late-comer to the party as everyone who has welcomed you so far has said about all I can think of right now, so I won’t repeat.
Just know that this place is a great source of support, advice and generally ‘nice friendship’. Take it from one who knows - the regular posters can empathise and we all know the sort of things you are going through and feel the isolation and loneliness.
Have you made sure you have registered with your GP as a Carer? If not, I suggest you do it - you’ve nothing to lose and everything to gain because they should then help to address some of YOUR needs and ensure you get the right support. I recently had a call from a newly appointed Care Co-ordinator at my GP surgery. There was no pressure or telling me what to do - offering some advice and making sure I know where to turn if I need help. I was surprised how positive I felt about the discussion (and I can by a right cynic!)
Yesterday, I felt quite low but after a few exchanges on here my mood lifted. If you have a nosey around you’ll find “Roll Call” thread where we have general chit-chats and are sometimes a bit silly to raise smiles. Always welcoming and supportive. As @Victoria_1806 said, use the Forum as a ‘pen-pal’ service, who’ll get faster replies - and more supportive ones!
Thank you to everyone for the kind words, the welcome and the advice. I think my introductory post was probably a bit overdramatic. My mum is easy to look after. Long may that continue. I’ve just been struggling with loneliness and was mainly looking for ways to be more sociable, albeit in an online format.
To address some of the points and questions raised. I never see my gp. I had a well man checkup when I was 50. I think that’s the last time I saw anyone. I’ve never been in contact with Social Services, mum has never had a Needs Assessment and I’ve never had a Carers one. My mum and dad were put on Attendance Allowance and me onto Carers Allowance about 5 years ago. That was arranged by a lady from Carers Resource. I’ve never had a two week holiday. I got my sister in law to look after my mum for an hour in April when I went for an optician’s appointment. And that took 3 months to arrange. That was the last time I was apart from her. I’m going to a wargames show on Sunday though. Financially we are coping. I knew something about the council tax exemption but never taken it anywhere because I was trying to sort out LPA and wasn’t sure if one would make the other harder. That hasn’t been resolved yet either.
Everybody is being very kind and making very helpful suggestions. But I don’t feel ready for something like overnight care in a hospice. That would destroy my mum. As far as she’s concerned she’s doing fine, she’s just old. We have a bed alarm and mum only gets up once at most and a good amount of nights not at all. My dad used to get up up to 12-15 times a night. That took a toll. But I sleep fine mostly. The alarm didn’t trigger one morning this week when I was getting mum up so I phoned up and it was replaced the next day.
I don’t want to appear to be dismissing all the helpful advice. But the main problem I’m having is feeling lonely and not having a tiny social circle. That’s why I joined really. I’ve looked around the forum a little but I’ve not found the Roll Call thread or anything like that.
@Tombola Morning!
Thanks for sharing more about you and your Mum.
You may have re-interpreted your intro-post as overdramatic, I interpreted it like a BIG shout out, over… ummmm…let’s seee… the Grand Canyon of what looked like dark and empty space!
You just received a HUGE resonance of echoes from our lovely friendly-forum, wanting to make sure you’re ok & so you know you’re not alone I can see how THAT response esp. mine with all that advice may’ve been a tad overwhelming and difficult to respond to! So I hear you!
Totally understand.
It sounds like you and your Mum have a calm, steady routine - yay and phew! I TOTALLY get that. Similarly, I look after my Mum and she’s doing ok, too.
You’ll figure out when you’ve time and space to figure out the council tax thing - fyi it gets backdated and recalibrated moving forward, at least when I did ours that’s what happened. Yes, having LPA makes things a LOT easier in my experience.
SO glad you’re able to get sleep. We had the same thing with my Dad before he passed too.
Good thing that @Charlesh47’s signposted the way over to Rollcall! See you over there!
Hi Tommy im down the same path as you, we are all in this together as one! I broke down in tears yesterday infront of professionals at a meeting, and i just so determined to have a better day today
Welcome to Carers Connect. It sounds like this has been a difficult time for you.
Glad to see many words of support from others in the forum about your caring situation. You would also be very welcome to join one of our weekly Care for a Cuppa online meet-ups, held on Zoom, where you can take a break from your caring duties to connect with other carers who will understand some of the challenges you are facing. www.carersuk.org/cuppa
We also run regular free well being sessions: Share and Learn | Carers UK
Thank you again to everyone for being so welcoming and supportive. Now that I have the link to the roll call I will try and pop my head in there now and then.
I can see how THAT response esp. mine with all that advice may’ve been a tad overwhelming and difficult to respond to! So I hear you!