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Hi everyone - Carers UK Forum

Hi everyone

Tell us a bit about yourself here.
I am a carer for my 87 year old mother who is blind, has severe short term memory loss (maybe precursor to full dementia in the future), is very deaf, has severe osteoarthritis which limits her mobility, and very poor appetite. Consequently, I do most things for my mum. I had no choice but to become a carer as my mum's health (both physically and mentally) has deteriorated in the past few years, and she has fallen twice in the past 2 years and also had swallowing difficulties. She used to live with a friend in her flat, but the lady was finding it difficult coping with mum, and she herself was in poor health and had 2 hospital admissions last year (and 2 this year!).

So now I live with mum. I had my own rented flat but gave it up to become full time carer. Luckily, I took early retirement from the NHS in 2016, otherwise I would have had to give up work anyway. Being a carer is a lonely life, as I have lost nearly all my friends, and even some facebook "friends" have become totally unsympathetic and patronising when I posted about this situation-and that's coming from some ex nursing staff I knew-enough said! Sometimes facebook is the worst place to ever want to be! My mum's church goers have abandoned her-never any visits or offers of help-from 400 members-disgusting! It is hard for mum as she can't understand why nobody visits. We have NO family whatsoever-all dead, or due to one childhood event, we have never seen the ones left alive in 40 years (not appropriate to discuss here why). So no support from anyone. In fact if my mum and I died today we would not be missed by anyone! Yes-almost complete abandonment. My only friends are two girls in the Philippines who have shown more understanding than anyone in the UK, a lady from Russia I chat with and friends from Romania who now live in UK and to be honest are more friendly, warm and caring than anyone I have ever known. So they keep my spirits up. And my Romanian friends have visited us both at home. My mum loved it. And this is another important issue-loneliness. I despair when I see my mum lonely, nobody caring or visiting her. I see her getting more and more depressed and lifeless.

I only get 4 or 5 hours sleep as my mum wakes up in the night sometimes twice for the toilet and forgets where she is or where to go. So very very tiring. I often resent being here, but know it is what I must do. It was hard giving everything up to do this-though if I ever mention it I feel guilty. I loved photography but gave it up and never go out anywhere, unless it's to shop. No chance of any holidays ever again as it's too difficult coping with mum if she goes out even for short spells.

I did spend weeks just drinking night after night to cope, but ended up with a beer belly! Now I have given up alcohol for a month, gone on diet, lost 3kg and got treadmill-at least I can walk or run miles without going anywhere! I eat healthily and try and try to get mum to do it too, but it's hard work! In fact exercise is the only thing that keeps me sane. My health has suffered also because of high blood pressure, though I am controlling it myself through diet and beetroot juice (!) as I have NO time to visit a GP. I also have no dentist now as I cannot give up time to see one. Neither can I get an eye test or proper glasses. I cannot leave mum for more than 30-60 minutes! Finally, I can't even get my car serviced because I can't go out for long enough. I have even lost interest in Red wine which I loved 2-3 times a week-hmmmm!!

So that's it. But despite all this, I know I must do the right thing for mum as best I can. I do not matter any more-that's fair enough, but my mum DOES matter to me. I admire every single carer here-I know I am lucky compared to others, because it is a hard life when you don't get any support-either physically or emotionally.

I would just say to conclude that Social Services are pretty useless, and as for having a 2 hour break each week, well they can stuff it. That "allowance", as they put it in such a patronising manner, is no use whatsoever! I would get more free time in Prison!!
Mark - hi, just in brief as I really must log off and get on with things!

But what's the money situation like? In the end, it boils down to that. Could your mum/you afford say a £20 an hour private carer from an agency to come in and sit with her once in a while so you can get some 'time off' and get out of the house, while your mum has some company??? Sorry if that's too obvious and impossible.

Can you phone your mum's church minister and actually ASK for a 'ministerial visit' - eg, to take a mini service for her? I don't see why he shouldn't. It might 'shame' him into rounding up some visits from other congregants.

Wishing you as well as can be in an inherently difficult situation. Yours is a very touching relationship with your mum, and I think you are doing her proud. :)

Kind regards, Jenny
Hi Mark, welcome to the forum.
It doesn't have to be like this. Of course you need time off for visits to doctor, dentist, getting your car sorted etc. etc. Life must go on.
Have you spoken to the GP about mum forgetting where the toilet is, etc? Certainly sounds like she is going downhill, not surprising given her age.
Have you asked Social Services for a Needs Assessment for mum, and a Carers Assessment for yourself? It's a real shame you gave up your flat, because that would have given you somewhere to escape.
Does mum own her house, so that in due course you will inherit it? Are you claiming Attendance Allowance for mum?
Forgive me but if you have given up all the things you used to enjoy doing, are you not at risk of sliding into depression?

I admire you for willingly taking care of your mother but you do have your own life. Please make time to see your GP. I am in a similar situation, but the surgery knows I am a carer so I try to get an appointment early on so there is less likely to be a delay - ditto blood tests. Who else is going to take care of your mother if your health fails? It may be worth at least telling your GP how you are strugglign to cope and get it on file.

Could a carer befriender be an option? Ideally someone from a local group who could offer telephone support.

I too am sad you have given up your flat. The 24/7 caring is emotionally and physically very very hard. Well done on cutting down on the wine - I too was getting a bit too reliant on the good old 'wine o clock' so had to cut back a few months ago.

Keep posting we do understand here....
Hello :)

Thank you so much for reading and listening, and thank you for the very useful advice. I appreciate you all taking time to reply. My mum used to have a visit occasionally from the Minister of the Church, but I found out that was mainly a visit to play on the goodwill of my mum and get offertory money from her. He's since retired-good I say lol! I will look at the possibility of private care-mum is not wealthy but she could pay for someone to visit and sit with her occasionally. The problem is when anyone has come to see her and asks if she needs help, she is still able to say "I'm fine, and I've got Mark if I need anything!" :)) But they don't see her when she is alone with me-sad that her only comfort now is a teddy bear in bed with her every night :(

I might just get to see my GP and confide about difficulty coping, but I know my mum does feel sorry for me being with her day after day, and I would feel so guilty if I wasn't with her. I owe her so much as she looked after me so well when my Dad died when I was 11 and through my teens. So when I think of this, I am simply saying thanks to her by looking after her in her twilight years. But I accept I must take care of myself too. Thanks again for all your advice and being so kind. God bless you all.
Mark, if mum has a Carers Assessment and doesn't have much money, she won't have to pay much for a "sitting service" and it might be nice for her to have a chat with another woman. Is she in receipt of Attendance Allowance?
Well, the minister sounds like a waste of space (and that's being generous to him - disgraceful behaviour for anyone, let alone a man of the cloth!) Let's hope the new one is better....

You say your mum is blind (how dreadful, poor soul), but would that mean that maybe something like the RNIB, or Action for the Blind, could provide a sitting service for her sometimes? (Even if it needed a donation in exchange!)

I agree with BB that she might actually enjoy some female company. And if she were 'contented' when she had someone with her, that would mean you could take some 'time out' with a clear conscience.

Mark, I say this as a widowed mum myself (and your words about how she looked after you after the tragically early death of your dad are really touching), but as a mum, EVEN IF I needed a lot of care in the years ahead, and EVEN IF that came primarily from my son (which I hope, obviously, it would not need to)( even if he wanted to!), I can tell you from my heart that I would REJOICE that he was able to take some 'time out' for his own interests....

Look at it this way. Your mother now, due to her age and ill health, cannot do much for you any more, but all mothers WANT to be able to do things for their children. Letting you have 'time out' is something she CAN do for you, that you would really value. So please, let her do that for you. It would make her feel good about herself, good that she can still be a 'mum' as well as your caree.

You have a very special relationship with her, and that is wonderful. But sometimes that means allowing someone else to make a 'sacrifice' of sorts for you, even when you don't actually want them to, but you have to let them for THEIR sake, not yours. She will not want to feel she is a 'burden' to you, and giving her that 'gift' of letting her feel that there is something she CAN do, will be invaluable to her.

I hope my argument persuades you - remember, it's a mum making it, and I know how mums tick!
Hi Mark, I don't know you and my situation is different to yours but I hope I can empathise.
And as a fellow photographer I can, particularly regarding not being able to get out, that is driving me up the wall!!
Loneliness can be a killer so please, do be wary and don't for one minute think that you will never be able to do things again. It may feel like that to you sometimes but be logical and recognise that you will be able to resume some activities, sometime.
You list the things you cannot do but ask yourself what you can do, even if it means looking at situations from an unconventional perspective.
Others have suggested having full assessments done and contacting any charities that may be relevant.
Have you done that?
Are you claiming Carer's Allowance? (Takes a long time to come through but is back dated.)
On a practical level Specsavers do home visit eye testing and it may be that you can find a dentist that will also examine you at home. You will have to research to see if you qualify.
My garage also collects my car and returns it for servicing and MOT, free.
Maybe you can find one that will do the same for you?
I can't help otherwise but I hope others can and you find some company.
Good luck! :)
Mick's mention of a 'visiting dentist' reminded me that I seem to recall someone else on the forum managed to get a dentist out to check up on her husband's teeth, when he had difficulties/was reluctant to actually go and see a dentist.

I guess phoning round dental clinics nearby would be a start. Alas, though, I suspect it would need to be a private appointment these days????
I may have missed it but Mark, where do you live? You say you cannot get to a dentist and you may qualify as the definition includes 'housebound'.
To find out more about the community dental care available in your area, contact NHS England on 0300 311 2233.
If you qualify then NHS charges apply otherwise and for one area (Luton & Bedfordhire) it will cost £100.
This is just one example: https://communitydentalservices.co.uk/o ... me-visits/