• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

How do you cope

Grin

Registered User
May 22, 2016
1
My husband has not been diagnosed, but during last two,years I have lost my mum and dad,to this,so,I,am fully aware.
I have seen his doctor and mine, both say they will test him, but don't.
How,do you cope, I am going crazy
He is so demanding, wants me to,take him out every day and demands everything
Today I had hospital when I got home he had coat and shoes,on and got very nasty when I said I needed lunch.
He just sits on sofa, I have to do everything, it's difficult to find time to take him out every day.
I,work two morning each week, my lifeline, but feel I have to stop as his demands are great.
Am I selfish to want a life
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,540
Yorkshire
hello @Grin
welcome to posting

no way are you selfish, having something for yourself is so important

I do agree, though, that you need to become a pest with the GP ... I don't understand how a GP can agree there's a need to check your husband over but then not do any tests
write a list of all your concerns, all the things your husband cannot do for homself now, how you have to support him and the effect this is having and give specific examples of issues over the last week ... send this to the GP, ask for a referral to the local memory clinic and say you will make an appointment at the surgery for your husband in a week (tell your husband it's for the yearly check up/flu jab ... any excuse)
 

Bunpoots

Volunteer Host
Apr 1, 2016
3,824
Nottinghamshire
Hello from me too @Grin

No, not at all selfish...everyone needs time to themselves.

Is there any chance you could persuade him to go to daycare or men in sheds or something like that? That way he could go out and you could have time off.
 

Larker

Registered User
Mar 1, 2019
39
East Yorkshire
No not selfish just human. I'm in the same situation. I love my OH but no longer able to leave him on his own. It makes me feel sad seeing the dependent person he is now. I cry a lot which is not good for either if us. I need time away to feel normal again. Best wishes x
 

leslyz

Registered User
Oct 24, 2015
278
You are not selfish in the slightest, you are exhausted and stressed and deserve some support. This is so awful for you. The hardest thing is getting other people to recognise the problem. It doesn't make sense that the doctors haven't tested him. I agree with Shedrech about making a list and giving it to the gp. when I was struggling to get a diagnosis for mum I actually wrote a letter to the gp and requested an appointment. When it's in writing they have to respond. I really hope you get somewhere with this soon it must be so hard. Meanwhile maybe consider contacting local carers organisation or the alzheimers support group in your area for help. And keep posting, at least you can sound off here and share your frustrations. It's such a cruel illness and it sounds like you've already had more than your fair share of dealing with this in your family. Take care.
 

GMRB

New member
Oct 24, 2019
1
My husband has not been diagnosed, but during last two,years I have lost my mum and dad,to this,so,I,am fully aware.
I have seen his doctor and mine, both say they will test him, but don't.
How,do you cope, I am going crazy
He is so demanding, wants me to,take him out every day and demands everything
Today I had hospital when I got home he had coat and shoes,on and got very nasty when I said I needed lunch.
He just sits on sofa, I have to do everything, it's difficult to find time to take him out every day.
I,work two morning each week, my lifeline, but feel I have to stop as his demands are great.
Am I selfish to want a life
I have same problem - always wants to go out - can't get jobs done in the home and no escape - he's like my shadow. I fluctuate between sad and angry. Communication very difficult - low volume speech, forgotten or incorrect words; when I ask him to start his sentence again, it's usually "I can't remember". a frustrating life for both of us.
 

Dimpsy

Registered User
Sep 2, 2019
1,045
Don't give up your job, it might seem like the easy solution but it gives you your independence (for a few hours), income and the opportunity to mix with other people and converse in everything but dementia.

As others have said, it is important to get a medical diagnosis for your husband; that should open up the different avenues of benefits you both may be entitled to and the types of care and support that is available in your area.

Do you have family who can step in and help you? Don't be afraid to ask for support, from within the family and outside organisations, you may be pleasantly surprised.
 

Kentish lady

New member
Oct 25, 2019
2
My husband has not been diagnosed, but during last two,years I have lost my mum and dad,to this,so,I,am fully aware.
I have seen his doctor and mine, both say they will test him, but don't.
How,do you cope, I am going crazy
He is so demanding, wants me to,take him out every day and demands everything
Today I had hospital when I got home he had coat and shoes,on and got very nasty when I said I needed lunch.
He just sits on sofa, I have to do everything, it's difficult to find time to take him out every day.
I,work two morning each week, my lifeline, but feel I have to stop as his demands are great.
Am I selfish to want a life
MY husband first went to his doctor for something else and I told him we were worried about his memory. The doctor gave him a 10 minute memory test that is on their computer, and when he got a bad result he said he could be referred to the local memory clinic. They did more tests and after a while my husband has a care co Ordinator and I have had loads of information and a home visit and lots of support. There is help out there get help by taking your husband to the doctors or go on your own if he wont go!!!! Good luck. It all takes time so get started now!!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
My husband has not been diagnosed, but during last two,years I have lost my mum and dad,to this,so,I,am fully aware.
I have seen his doctor and mine, both say they will test him, but don't.
How,do you cope, I am going crazy
He is so demanding, wants me to,take him out every day and demands everything
Today I had hospital when I got home he had coat and shoes,on and got very nasty when I said I needed lunch.
He just sits on sofa, I have to do everything, it's difficult to find time to take him out every day.
I,work two morning each week, my lifeline, but feel I have to stop as his demands are great.
Am I selfish to want a life
I found out yesterday that you can self refer to your local clinal mental health team. Have a look on the internet & ring!
Glad my newfound knowledge might help someone!
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