Hi everyone. I’m 53 and care for my mum, who is 83 and has dementia / a brain tumour and has been going downhill rapidly since September. We’re currently waiting for scan results and a verdict from specialists as to how to move forward with treatment. I love my mum to bits but since I’ve had to stop working, and because she sleeps a lot during the day, I’m feeling terribly lonely. The weather isn’t helping me keep my spirits up either! Long-term I’m not sure how we will cope, mentally or financially and this is playing on my mind a lot too. Basically just having a meh moment and wanted to share / offload. I know there are people in far worse situations, sending strength to you all x
1 Like
Hi @Losingsigi
Great to have you aboard our lovely forum of friends!
Hop over to Roll Call https://forum.carersuk.org/t/roll-call-march-2024/124620?u=victoria_1806
We have a general chit chat like neighbours over the fence - anything, everything - vent, giggle, complain, shout, hug, cry - whatever feels comfortable for you go ahead
Oh and lots of memes, emojis and a expletives because 
is accepted but not S**T but we do have to talk a lot about sometimes - literally and figuratively 
Also, text anytime, there are some night-owls who can’t sleep so we tend to run almost 24/7 in catching up with each other.
If you click on the profile circle of a person you’ll see their ‘profile’ section.
I’m near age to you I’ll be 52 this year, and I helped my Mum care for my dad who had dementia, bladder cancer, congestive heart failure rheumatoid arthritis and thus, poor mobility, fractious episodes, and we cared for him until he passed jan 2020, a few months prior Mum was diagnosed with 2 different cancers, so e pivoted hard into her surgeries chemo & radiotherapy in 2020…I care for her now. I left work in Belgium and came back to the UK…I saw all that rapidly but we all know what this means between the lines…
We each have a unique rollercoaster - no comparative scale here! we’re each challenged mentally, and all fronts…too long to list… We’re each equally and ALL in difficult situtations Yours is just as important and to be discussed as everyone elses!!
The Carers UK helpline may offer some ideas Helpline and other support | Carers UK
Sending some hugs - you’re definitely not alone now!!!
If you need some giggles one of my fave threads is the Bumper stickers we all came up with - thanks to @Ula suggestion: https://forum.carersuk.org/t/bumper-stickers-for-carers/123563
take care
3 Likes
Hi Losingsigi, welcome to the forum. If you are worried about finances, Carers UK has a brilliant helpline, they can go things with you to make sure you and mum are claiming everything you are both entitled to. At very least, if you have given up work you can claim Carers Allowance and mum should be getting Attendance Allowance and exemption from Council Tax. Has mum had a Needs Assessment from Social Services? Has anyone talked to you honestly about future care options, or NHS Continuing Healthcare? Ask us on the forum you like, if we don’t know the answer, we can point you in the right direction. Some of us are even awake when we should be asleep, me included as arthritis in my hands can disturb my sleep. We seem to have become a Night Owls Club. If something is bugging you in the middle of the night, just share your thoughts. I’ve now lost all four parents, husband, brother and sister in law. Sometimes doctors think they are being kind keeping information from us, but I found it was better to know, then I could plan and prepare.
2 Likes
@Losingsigi Hello. I can understand your feelings. Your love for your mother shines through but YOU deserve a life too. I guess you need to wait for the test results. I am sad that you had to give up work. I echo Victoria - Roll Call is a good way to share the ups and downs of caring and for me it has been a life saver at times.
I am in a similar situation. My husband is nearly 85 but medically non compliant and he too sleeps a lot but not always easy to predict when or for how long.
Financially are you sure you are getting all the benefits you are entitled to? I think Council Tax is reduced by 25% for your mother if she has had a dementia diagnosis.
Please do not feel alone.
1 Like
HI @Losingsigi Welcome to the Forum. 
(if that doesn’t seem too forward!) Lovely photo - presume it is you and Mum!
Others have said most of the things I would thing by way of a quick introduction to this place. BB’s advice on benefits is valuable, if Mum isn’t claiming Attendance, then get a claim in straight away, it opens up Carers Allowance for you and without being personal, check if she can get Pension Credit. The CarersUK main site has a whole section on Financial Support, so click on the link and it’ll open for you.
Have you been in touch with the local Council about a Carer’s Assessment? This is FOR YOU, not Mum and focusses on YOUR needs and what they might be able to do to support you.
I’m caring for my husband, Graham, who is 68 and I am 63. He suffered a stroke at New Year 2 years ago and it resulted in us having to close our business and I was suddenly - with no warning, training, or even having to apply for the role - Full Time Carer for him. It was a fairly mild stroke (if there is ever such a thing) but this led to a cascade of other medical problems over the last two years which have left him pretty dependent on me. He keeps apologising for (as he puts it) “ruining my life” but he has done nothing to cause the problems. There ARE days when I am fed up and feel lost, but I just remind myself - and sometimes him - that when I stood taking my Vows, I couldn’t look him in the eye because I felt they meant so much for me and I was afraid I would not be able to finish saying them if I looked into his eyes. I didn’t take them lightly and they still mean so much to me. (OK enough I am getting soppy now!) I know your situaion is slightly different, but LOVE over-rules so much in these circumstances.
@Victoria_1806 has commented we will talk about EVERY aspect of caring and she mentioned our chats! Fortunately G only has bladder continence problems, but I have turned changing the bed into an art form or sport (Olympic Gold Medal standard!). So you’ll find there is almost nothing which can shock most of us on here.
We tell it as it is and it DOES make it easier to share how we each feel… There is not one person who hasn’t felt at a low ebb - and shared those feelings - and you’ll see that when that happens the love and support which ‘gushes’ from everyone else is AMAZING and boosts you as you realise you are not alone.
Hope you see you posting - when you feel comfortable doing so - you are not alone and support is ALWAYS available here.
I meant to mention - do you have Power of Attorney for Mum? If not it’s definitely something worth sorting out as it can save a lot of problems when helping her deal with things.
1 Like
Thank you for the replies. Mum is now on AA and I am on CA. I have literally just posted the LPA H&W form yesterday. Doing both LPAs was too much for mum to grasp so we are leaving the P&F one. I have online access to her banking so that helps. Financially my main worry is due to my own poor choices in life - I had an abusive marriage and my (eventual) divorce left me with nothing. Having lived abroad for 24 years I also have no real state pension to look forward to. Mum and I live in a bungalow which we own jointly and, other than mine and her meagre savings, that’s it. So if full time care (I have promised I will never put mum in a home) is required in the future (which is almost inevitable) I/we will be quickly sunk.
Again, I’m aware that there are lots of people worse off. I’m just really low atm, waiting for the multi-disciplinary team’s verdict, unable to sleep due to worries and basically feeling terribly sorry for myself. It’s rather pathetic x
1 Like
Stop being so hard on yourself, long term caring is tough, you cannot do it all by yourself. Asking for help isn’t an admission of failure. Definitely contact our helpline for benefits advice. It’s really good the house is jointly owned.
1 Like
I’d say what you’re feeling is about par for the course. We all have times like that. And as for the “lots of people worse off” thing,there’s no point in comparing because we all cope differently with the same thing, or for that matter with different things. It’s like comparing apples and tomatoes. They’re both fruit, as we’re all carers - but we’re so different…and just as you wouldn’t find tomatoes in a fruit salad, you would find me struggling with giving intimate personal care for my wife, whereas I’m perfectly happy pushing her wheelchair all over the place. Well, perhaps not up hills so much. I tend to sound like an underpowered steam train up hills. All puff and no go…
Yeah. Probably best not to compare. I’m going to have that image in my head all day now…
Anyway, welcome aboard!
2 Likes
@bowlingbun is so right. You cannot take on everything yourself - here’s the kettle calling the pot !!! - you are entitled to help and clearly need it, don’t be afraid to ask. Many years ago my Dad applied for AA for Mum who had MS and a doctor came to assess her. It turned out to be an ex-neighbour who said she was shocked as Mum should have been getting that and much more help for years. It’s just no-one pushes you to claim or seek the assistance which is available. Whatever else - don’t be afraid to ask and PUSH it is an entitlement.
Hopefully Mum’s and your GP is aware you are her full time Carer. If not, make sure you tell them. It can open up other help for you and they will also offer you vaccinations and the like to help keep you healthy.
If you can, I would suggest trying to sort out the P&F POA as well as my experience is that some financial institutions can be really fussy sometimes and it also means that dealing with benefits is covered as well. All correspondence concerning G’s State Pension and AA come to me automatically now and I can phone to discuss without going through a whole palaver of getting him on phone to say “speak to Chris”.
Sorry if I am preaching a bit!
Worrying is NOT pathetic. I do it all the time and I bet everyone else on here and practically every carer does. It comes with the territory because of the LOVE we have for our Caree. If you didn’t love Mum, you might not worry. It’s a double edged sword which we all find you about.
Ah @Charlesh47 has posted - he has a lot of experience of Caring (oh no that makes it sound like I am saying he is old…) and as for apples and tomatoes… Aren’t tomatoes also known as “love apples”? I digress in my usual silliness.
You have now found a new broad family and we “help our own” so never feel alone.
2 Likes
Thanks all for saving my sanity this morning. I just had a little teary tantrum because I couldn’t assemble mum’s shower chair (she is a heavy lady and her balance is getting increasingly worse) - damn you, missing screws - then came back here to your words of encouragement x
2 Likes
Sending cyber hugs. We all have days like this I promise. For me, the Forum especially Roll Call has pulled me through.
1 Like
Sometimes crying can be a very good thing. When did you last have a holiday? After my son was born, I didn’t have one child free day for 16 years, and my once robust health was ruined forever. You need to look after yourself too, and however much mum wants you there 24/7, you must have some time off.
1 Like
Keeping one ear out for ‘calls for help’ or unexpected sounds is very tiring. I dashed upstairs a short time ago after hearing a ‘double bang’ - I was worried after G had an issue in the shower a few days ago. Turned out he had dropped the loo seat which downstairs sounded very loud. It’s things like that which are wearing on the nerves.
Had to help him dress as he is so dizzy and light headed - BP is OK and Glucose levels too… GP next Tuesday and he is aware of these symptoms for will carry out more checks as well as stabbing him for his cancer injection.
You’ve found out this morning how helpful it can be to “unload” on here and the amazing support which is forthcoming when you don’t even ask for it. We’re all in the same or very similar boat.
2 Likes
It’s so easy to spiral downwards.
I used to say exactly the same, that there’s others worse off. But this is happening to YOU!
Mindfulness helps and I always go for a walk every day, even if it’s just round the garden.
I also reached out to Carers Uk. They have lots of advice and support available.
Above all else, be kind to yourself (easier said than done). x
3 Likes