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just tell me its ok

(39 Posts)
Canarygirl1 Sat 26-Mar-22 15:40:33

my dhusband is working along the dementia line after a severe brain bleed and many tia's . This makes me sound awful and horrid but I am so tired of making all the decisions, having to think how to tell him things and just never going anywhere at all now. There is just no help to be had and it is very difficult to get him to talk to people if they come, he just goes to sleep!
Our children are coping with a terminal ill child on one side and the other is bipolar so not able to ask for help there.
Life seems completely pointless and I am so very tired and need to lose weight which isnt happening. Sorry very self pitying but needed to say it all thanks for looking

Ali23 Sun 27-Mar-22 22:27:09

I’m so sorry that things are so difficult for you OP. I would say reach out as much as you can even if it is online.
The forum on Carers UK was a great source of info and comfort to me when my mum first started to be more needy.

Luckygirl3 Sun 27-Mar-22 21:56:32

I know what it is to have an OH with a condition that is causing mental and physical deterioration. And I understand how hard it is to have to be the one making all the decisions. Please look at the links that have been posted and also seek help to find a local carers' group.

If you are struggling, emotionally, physically or financially then social services is there to help - your OH is entitled to an assessment of his needs - unfortunately I found that the carer's assessment was just that - it carried no assistance of any kind with it.

Canarygirl1 Sun 27-Mar-22 21:29:31

thank you so much for all kind advice which i will follow up. Best wishes to everyone else who has the same type of problems

LauraNorderr Sun 27-Mar-22 12:33:30

Oh Canarygirl my heart goes out to you. There is so much good advice on here that I have nothing to add but a huge virtual hug.
Please follow up on all the great suggestions for practical support and keep posting on gn for emotional support.
Try to look after yourself and make the most of moments of respite.

sodapop Sun 27-Mar-22 12:28:22

You are dealing well with such difficult problems Canarygirl I can't add any more to what has been said, Admiral Nurses, Age UK,support groups, short periods of respite care for your husband.
Take all the help that is offered for you and your family, I wish you well.

humptydumpty Sun 27-Mar-22 12:22:32

Very, very hard for you canarygirl. Can your DH go into a care home for respite care to give you a (much-needed) break?

Iam64 Sun 27-Mar-22 11:25:08

Just seen your post Canarygirl and wanted to add my voice to the advice and support you have received. I hope you have a positive response to any request for help.
Being a carer for your husband is enough without the added difficulties and sadness in your family
Try to look after yourself and keep in touch here x

Esmay Sun 27-Mar-22 10:30:00

Hi Canarygirl
You have my every sympathy .
I know exactly how you feel and what you are going through :

My father has always been difficult now he's shouting abuse at me all day long . He doesn't have dementia ,but signs of paranoid schizophrenia .
I'm trying everything to alleviate my situation .
I also need to lose weight .I live on snatched ready meals and sandwiches .
I maximise my shop with a short trip to the park and enjoy the garden .

Saying a prayer for you .

Pepper59 Sun 27-Mar-22 09:55:26

Sorry your husband is so unwell and that you are having a difficult time. Glad you felt able to post on here for support. I know nothing about dementia, so I don't feel in a position to offer any advice, but I have been a carer. A very lonely and isolating role. There are some good people here with what looks like good advice, so perhaps it may help. Go easy on yourself, you are doing a fantastic job under very difficult circumstances. Take care.

Teacheranne Sat 26-Mar-22 23:42:52

There is an excellent forum/ chat room called Talking Point which is on the Alzheimer’s Society website. I have found it very helpful to get advice and support with my Mums needs, there is usually someone who has experienced the same issues and can offer ideas. It’s also a place to rant and talk about problems with others going through the same.

Redhead56 Sat 26-Mar-22 23:34:24

My heart goes out to you at this most difficult time. You have been given some good advice here. I hope you get the necessary help and support you clearly need. Until you do get the support take care of yourself too.

LOUISA1523 Sat 26-Mar-22 20:45:22

Ask for a referral to the Admiral nurses ( specialise in dementia)....carers assessment....does he get get attendance allowance? Do you get carers allowance? Have you got a blue badge? I know its not about the money...but it can help greatly with support ...really hard times for you OP ?

Canarygirl1 Sat 26-Mar-22 20:06:15

thank you for all the kind replies. I notice forgot to mention that he is housebound and very dizzy and unsteady, if we go in a car he is violently sick. I will speak to age concern and my gp and see what options there are for us

lixy Sat 26-Mar-22 19:44:54

Can't add to the great advice here; hope it is helpful to you.
Please talk to your GP; they do have time to listen despite the apparent difficulty in getting appointments etc, and are anxious to look after their patients.
Please look after yourself and I hope you get some practical help soon.

Serendipity22 Sat 26-Mar-22 19:24:55

Canarygirl I read your post and I want to say that I am so very sorry you are in this difficult, frustrating and exhausting situation x

If anything, you must let things out, post on here, talk to your friends, whatever and however you must get it off your chest, its paramount x.

Yes, contact social service, Age UK and lots of other extremely helpful organisations, they know all the people that will help you help is out there ....*YOU ARE NOT ALONE*.

The befriending service is a Godsend for a lot of people, it just gives them time to detach themselves, breathing space.

Remember you are not alone.... x

flowers

Libman Sat 26-Mar-22 18:18:42

The last thing you should do is feel guilty and the first thing you should do is look after yourself, physically and mentally. But please don’t stress about your weight at the moment, now is not the time. If you could sort some out of your other problems first you would probably feel more able to look at your diet. Lots of good advice here. Talk to Age UK and the Alzheimer’s Society and keep talking. ?

Mapleleaf Sat 26-Mar-22 17:58:12

Canarygirl, you are not being self pitying , you’re asking for help. You are going through a very difficult time which is impacting you physically and emotionally. I’m so pleased you posted - there are so many lovely people on this site with valuable suggestions. I can’t really add to what has already been said, my suggestions have already been offered by others. What I will say to you though, is please keep posting here, about anything that troubles you, as there will always be someone who has personal knowledge of the issues or can advise you where to go to seek support. ?

Ilovecheese Sat 26-Mar-22 17:52:52

You sound remarkable calm and balanced with all you have to cope with.

crazyH Sat 26-Mar-22 17:52:21

Good advice here Canarygirl. There’s nothing I can add or say that will be of any use. But I am thinking of you ….you are so brave. Just be strong. You and your family are in our thoughts
flowers

dogsmother Sat 26-Mar-22 17:44:56

?? from me. I say to you what I always say, you must remember this…you have to be your own best friend and advise yourself the way you would advise another. Read all the above and go with it some good advice. It’s very important that yo7 care for yourself xxx

Allsorts Sat 26-Mar-22 17:37:17

You sound like a woman with too much on her plate. Is there anyway you can get respite or have you the money to pay for help? To be a carer is hard you need time just for you, reach out for help, it’s important you remain healthy but you can’t be superwoman.?

Maggiemaybe Sat 26-Mar-22 17:34:03

Me too. I hope you manage to get the support you need and that things improve for you. thanks

Jane43 Sat 26-Mar-22 17:23:30

I can’t add to all the great advice on here but would just like to send my best wishes to you.

ExDancer Sat 26-Mar-22 17:13:39

AgeUK are absolutely brilliant - just pick up the phone and ring them. Tell them exactly what you've written in your post, they can organise things like a volunteer to "husband sit" and give you an afternoon off - to go to a slimming club or anything else you fancy.
They will also check that you are receiving all the benefits that are available to you.
Do it NOW (well on Monday).
Its OK to feel that way, ((hugs))

PECS Sat 26-Mar-22 17:02:51

Sorry life is so hard at this point canarygirl It is not surprising you feel so overwhelmed. I endorse those other posts saying you should seek more support. I have a a niece by marriage who has early onset dementia. Our nephew cared for her for as long as he could but then moved to at home carers for 2/3 days a week so he could go out & do things. She is now in residential care. I know locally there are day centres for people with dementia so that family carers get some respite. Maybe that would be a start?