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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

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

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 ?

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.

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.

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.

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 .

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

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?

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.

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.

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

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.

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.