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Hi everybody - Carers UK Forum

Hi everybody

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141 posts
My name is Chris and I am a carer for my 83 year old mum who has Lewy Body dementia. She has lived with me for some years due to mobility problems but was diagnosed with the dementia early last year and it is quite advanced. I started reading the posts on this forum and was almost relieved to know that I am not as alone as I feel right now. I normally work full-time but may need to reduce my hours soon due to the nature of my mums illness. I have until recently been coping alone, not wanting anyone to see that I am struggling, but following a hospital admission for my mum with a UTI (and we all know how UTIs cause terrible confusion in the elderly even without dementia), I finally accepted that I can't do it on my own any more. I'm normally such a strong person, but feel weak and hopeless at the moment.

It will be great to be part of this forum, just knowing that someone else feels the same as I do, and being able to talk (albeit with a keyboard) to others, knowing that they understand.

And..... will it ever stop snowing? It's getting irritating now.

Hi Christine

I just read your post, and really do relate to you, as I am going through the same feelings as you!! I look after my grandmother, whos suffers with COPD, and I have two young daughters and a husband to look after!!
I chose to terminate my employment of 7 years last april, specifically to look after gran full time. I knew it would be hard going, but I didnt realise it would get rapidly much harder!!
I am my grans sole carer, and what makes it a constant juggle for me is that she dont reside with me, due to my home not being suitable for her needs. I am visiting her up to 5 times a day and tending to all her needs!! I have no help whatsoever, no home care, no respite, as my gran really dont want either of these, and up until recently I have, thought it didnt matter, as I thought I could do it all alone.I really feel ive tried my hardest, and more than what I have been able to cope with!! But her recent deterioration and myself being mentally and physically drained, I find myself thinking about suggesting home help to my gran, and i know she wont be happy about it, but I really feel I cant carry on the way I am! I am constantly exhausted, and my family suffer for it, I love my gran dearly and am disappointed in myself for feeling this way, but I think reality is starting to hit home, and I dont think I can do it much longer on my own! So I know what your going through, its real tough, but I think we need to remind ourselves, we can only do our best, and we are not super human! Its going to break my heart having help when she is against it, but im sure if she knew how I really feel, she may understand, its so hard I find to bring the subject up with her!! Dont think your alone christine Image bekky
Hello and welcome Image
Hi Bekky,
Thank you so much for your reply - everything you say is so true, so accurate. You have it harder than I do, because you have your hubby and children to look after as well! And this is what I mean about the posts on here - there is always someone who is suffering more than yourself. In a way, its easier for me because my mum is here with me, I know I'm normally at work during the day, but at least during the night, I am around for her - I have a baby monitor so that I can hear her when she calls out. Usually she doesn't even realise she's called me and thinks its someone else calling! Thats typical of this type of dementia apparently, she's convinced there are loads of people around the house - I wish! I realised too late that I was being daft not accepting help - but, again as you say, you like to think you can do it.

I really do think you should try and get some help with your grandmother - even if it just takes a little bit of the pressure off you. As stubborn as they are about not wanting someone in to help them, I think once you initiate it, she may well discover that it is nice to see someone else. My mum didn't want the carers to come in at first, so for the first couple of days, I stayed around when they turned up until she got used to them. Now, she's lovely with them, better than she is with me actually. Strange when I think of the tantrums and tears when I told her she would be having someone coming in.

It was lovely to hear from you and I really hope you find the tiny bit of courage you need to get some help yourself. You obviously have enormous courage to do what you are doing, but its the little things, like having to tell her that is so difficult. I'm sure she won't think any less of you for needing help.

Take care.

I'm thoroughly enjoying this already and have stopped feeling sorry for myself! Result.
I think being a carer is never easy, and I wouldnt say that I have it easier than you, as I think with your mum living with you it must be 24/7!
Im currently waiting for an assessment for my and grans situation, and its not coming quick enough....they have finally agreed to assess wether we can get help to odify my home for gran to come and live with us!!
I dont for 1 minute think this will make my role as a carer easier, but at least It wont be so physically demanding as it is right now, which then will mean maybe I will be less tired all the time, and also I will be able to be a better, mum, wife and a better carer....all in one Image
And yes, we do tend to think we can do it all, and like you said earlier, I thought I was a strong, energetic person who was prepared for anything, and up for my caring role, but this isnt just a recent thought, when i look back over the last year, theres been a pattern, I plod on ok for a few months, then I get worn out and run down, then depressed, then Ive bounced back....until the whole cycle starts again! and what I think is when im getting worn out then I do not feel im caring for her properly, which has a knock on effect then as I end up feeling guilty because I feel im not doing my job properly!! Its so tough being a only carer!
take care chris, been nice to chat to you Image
Hi Chris,

Adding my welcome too.

x x
What a lovely welcoming site this is.
It may be that having your gran with you 24/7 seems a lot, but as you said in an earlier post, having to go to her house 5 times a day, must be exhausting. I think I've only coped because my mum is here, and sometimes it can be a bit of a tie, especially when you have no other family to help out by sitting with them, but I think you feel safer somehow, having them close to you. I really hope you get the grant - it could make a huge difference to your lifestyle.

Oh God, yeh, the depression - what can I say that you don't already know! I have been off work for a month with severe depression and was referred by work (a hospital) for CBT to find out why I was depressed! Its pretty obvious I would have thought - classic depression - not eating, tired to the point of exhaustion, no interest in anything and in my mind, I hardly need someone to tell me its because I am a carer who works and feels guilty because I work. I do understand that with depression you need to keep active - but it is a vicious circle - I'm too physically tired with not eating anyway, to do any flaming exercise and I simply don't have the time to start doing press ups when I get home! I don't know whether to go ahead with the sessions because it's annoying me now.

So, your feeling guilty is part of the depression, it really is very common with depression. Don't ever feel like you are not doing a good job - you are doing amazingly well, though I know that you probably don't feel you are. You can't possibly do anything more - your gran is really lucky to have you - without you, she would be well and truly stuck wouldn't she?

We need some therapy to boost ourselves, even if it is just someone to say "well done" every now and then.

Better go now and attempt some housework - not a lot of chance of actually doing it, but I am thinking of it...

Hi Chris and welcome Image
Our snow has all gone, washed away in the rain Image
141 posts