When the person with dementia is a carer.

[Asthoreen]

I have been disabled for many years,mainly due to very poor eyesight.I am registered blind and a guide dog owner.My husband has been my carer for about 10 years,although I am pretty independent.18 months ago he was diagnosed with dementia and I am gradually having to do more and more around thee house( he is still able to go out alone and take care of himself as regards washing etc)
To make matters worse he is becoming increasingly picky and demanding ,for instance today it was cucumbers apparently the ones I buy are too thin,yesterday it was the mushrooms which were too small,everything I do is wrong.He also tells anyone who will listen that he spends all his time looking after me and never has a minute to himself.


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[truth24]

Sorry to read your post, Asthoreen. I think you need to talk to type GP or a social worker and explain the situation so that help can be organised for you both. Hopefully someone will be along soon with a better suggestion. Life most be very dIfficult for you both. With best wishes.

 

[esmeralda]

I'm so sorry you find yourselves in this very difficult situation Asthoreen. I can only echo what Verity has said. you really need professional involvement to ensure you are getting the help and advice you need. Hope this goes as well as possible for you. Es
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[Chuggalug]

Back in the late 80s, when I had very bad cataracts, I was able to see someone to help with various needs I had, as I lived alone. It was a desperate need of mine to have everything to hand with me knowing exactly where things were. Especially in the kitchen.

I wonder if they still do the cup alarms? Two prongs that hang over the cup which sound an alarm (powered by battery) when you pour boiled water from a kettle into it. If you have any of those little gadgets around to help you with your own needs, they may be things that inevitably get hidden away, due to your husband's dementia.

That makes the both of you vulnerable.

Get stuck in and make a carers assessment request for yourself if you haven't already, and make sure that GP and Social Workers are on your side to help with your husbands needs as well. Things are going to get harder, Asthoreen, and you need the backup to cope with it.

Please seek help, and come here often for any advice you might need.

 

[Asthoreen]

We had a carers assessment,nothing came of it unless you count a referral to some place that got me better lighting in the kitchen,OH just convinces everyone he is doing a brilliant job .He would certainly be capable of doing a bit of housework but as he seems to believe he does everything it is hard to know how to persuade him to do it.I have tried asking for a social worker but again nothing,the only contact we have is a memory nurse who just comes to do the memory test twice a year and an Alzheimer's worker who is very nice but I am not sure what her role actually is.


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[Chuggalug]

We had a carers assessment,nothing came of it unless you count a referral to some place that got me better lighting in the kitchen,OH just convinces everyone he is doing a brilliant job .He would certainly be capable of doing a bit of housework but as he seems to believe he does everything it is hard to know how to persuade him to do it.I have tried asking for a social worker but again nothing,the only contact we have is a memory nurse who just comes to do the memory test twice a year and an Alzheimer's worker who is very nice but I am not sure what her role actually is.


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Oh crumbs. You too? It's a similar picture to what I had for years on end. But you guys are vulnerable. You really do need to point that out. Request an interview with a Social Worker attended by yourself only, and then give them all your own details/fears for the future/whatever.

You can't just be left like I was. At least I had my eyesight. You haven't. That has to come into the care situation as an emergency.

I'd contact CAB (Citizens Advice Bureau) if I were you and get some proper, helpful advice. You need support. Don't settle for less!

 

[bemused1]

I would recommend writing to your Dr if your husband is resistant. If you can write? Not sure how bad your eyesight is.
The situation is obviously not as simple as one of you being the carer now. So start again with your gp because you are both now at risk. Also contact adult social services and ask for a review of carers assessment and for your husband.
The difficult thing is getting round your husband and that's the tricky bit. If you can write or email people before you meet them and stress that you need to put forward the true situation. I went through all this with my husband and you learn the tricks. If I can help any more, pm me.

 

[henfenywfach]

I have been disabled for many years,mainly due to very poor eyesight.I am registered blind and a guide dog owner.My husband has been my carer for about 10 years,although I am pretty independent.18 months ago he was diagnosed with dementia and I am gradually having to do more and more around thee house( he is still able to go out alone and take care of himself as regards washing etc)
To make matters worse he is becoming increasingly picky and demanding ,for instance today it was cucumbers apparently the ones I buy are too thin,yesterday it was the mushrooms which were too small,everything I do is wrong.He also tells anyone who will listen that he spends all his time looking after me and never has a minute to himself.


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Hi!
My father has been my mums carer for many years..now he has dementia. My mums not at all independant like you.
I basically care for them both!
Sounds like the sensory team have been out not the proper care assessment of needs social worker. Doesnt suprise me theres not much help!!
Id ring your local carers project and speak to them..the reality is your husbands personality and behaviour has changed already..and there should be someone to help you.

The nurse from memory clinic should be offering you a support worker from the healrh board. Doesnt suprise me if they dont!

The local alz society officer can advise you on where to go who to speak to..sounds like the primary agencies havent been much help.

Try the national dementia helpline if you havent got the local alzheimers society officers number!..

Things will change as dementia is progressive..maybe talking might help you too. Ring the carers project they have counsellors too!

People with dementia dont always accept help...carers dont always accept help...help isnt always easy to find!..the alzheimers society can help you!

Might be worth asking rnib if they have an extra needs officer?..im sure they are aware of dementia too!

You should have by law a dedicated social worker a propper care assessment for you as a carer and yours and your husbands needs..if theyre not giving it theyre breaking the law...

Might be worth trying an advocate from the alzheimer society they can give you a voice..in times when you feel no ones listening!

Best wishes

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