Stages - How do we know?

[jay6]

I think if you call your doctor and say you can't cope any more, that you will leave if you don't get help, the system kicks in, it becomes an emergency and the help speeds up. That's what I did and thankfully the Older Adult Mental health team got involved. The SW was wonderful, but I've just been signed off now and feeling a bit lost and 'abandoned'!!

I did all that made no difference. G.P. referred me to social who spoke to him and he pretended everything was fine and he could manage on his own. Total rubbish. They told me if I left he would need to find his own help as he was self-funding. I was given number of Admiral nurse who just made one call to tell me if I need help to call them. So when I'd had enough I text to say, I didn't want to be his carer anymore they just text back saying. If you leave tell social! I don't know where you are but here it's very unsupportive. Before the dementia, I had 10 years trying to get support after he'd suffered a very bad stroke. (Bleed) Was like hitting my head constantly against the wall.

 

[Violet Jane]

@jay6, the support (I hesitate to use that word) you're getting is completely unacceptable. The elderly friend who I supported had quite a lot of input from SS and she was a self-funder.

I would write an email to the GP (or hand in a letter if there's no public email) listing the problems in bullet points and make it clear that without help you will be leaving and your husband will not be able to cope on his own. Give them a date. Make it clear that your husband will deny that he has any problems because he lacks insight.

Ring SS and ask for an email address to send a similar email to.

You may need to write to the head of SS or enlist the help of your councillor or MP.

In my experience, things can happen very quickly if the particular service (NHS, SS etc) wants it to.

If all else fails you will have to wait for a hospital admission when a social worker will have to speak to you and you can tell him/her that you won't provide any more care and will be away from home when he's discharged.

 

[jay6]

@jay6, the support (I hesitate to use that word) you're getting is completely unacceptable. The elderly friend who I supported had quite a lot of input from SS and she was a self-funder.

I would write an email to the GP (or hand in a letter if there's no public email) listing the problems in bullet points and make it clear that without help you will be leaving and your husband will not be able to cope on his own. Give them a date. Make it clear that your husband will deny that he has any problems because he lacks insight.

Ring SS and ask for an email address to send a similar email to.

You may need to write to the head of SS or enlist the help of your councillor or MP.

In my experience, things can happen very quickly if the particular service (NHS, SS etc) wants it to.

If all else fails you will have to wait for a hospital admission when a social worker will have to speak to you and you can tell him/her that you won't provide any more care and will be away from home when he's discharged.

I emailed the dementia consultant last Monday. As no one has listened to me. I thought he too had just ignored me so I just phoned his office and to my surprise, I am down for a telephone consultation tomorrow morning re. my email. It's discussing here. The G.P. always refers me to social when I complain who in turn phone and talk to me. I explain but then they ask to speak to OH who gives load of lies about coping fine and not needing help. I just wish they wpuld listen to us carers. After all surely we know better than anyone what's going on? Why don't they see a PWD will lie and do what ever they can to present themselves as not having a problem?

 

[JaxG]

@jay6 that's absolutely disgusting, but it can be down to individual SW. 18 months ago my husband assaulted me twice, I had to call the police. The older adult mental health team got involved and they were useless. I was told to sell the flat and leave him, when I pointed out I could not afford to buy somewhere to live the SW shrugged her shoulders.
This time we had an amazing SW. He took time to talk to my husband, and then fact check with me. The SW asked questions that revealed my husband's lack of capacity - my husband told them he would be fine on his own but could not say HOW he would look after himself. Both the psychiatrist and SW assessed my husband to no longer have capacity and were supportive of both of us. Having said that, because my OH is not ready for a care home, if the meds didn't work I was told I would have to sell our home and split the proceeds.
I think @Violet Jane is right. Write to your GP and list how dementia impacts your OH in terms of his functioning or lack of (I think you said he is now incontinent? Surely that is enough to get help?) Then list how it is impacting your mental health and ability to cope. Of course your husband denies there is a problem - that is part of his condition, how do they not know this? I really hope you get some help soon, it is a nightmare for you.

 

[jay6]

@jay6 that's absolutely disgusting, but it can be down to individual SW. 18 months ago my husband assaulted me twice, I had to call the police. The older adult mental health team got involved and they were useless. I was told to sell the flat and leave him, when I pointed out I could not afford to buy somewhere to live the SW shrugged her shoulders.
This time we had an amazing SW. He took time to talk to my husband, and then fact check with me. The SW asked questions that revealed my husband's lack of capacity - my husband told them he would be fine on his own but could not say HOW he would look after himself. Both the psychiatrist and SW assessed my husband to no longer have capacity and were supportive of both of us. Having said that, because my OH is not ready for a care home, if the meds didn't work I was told I would have to sell our home and split the proceeds.
I think @Violet Jane is right. Write to your GP and list how dementia impacts your OH in terms of his functioning or lack of (I think you said he is now incontinent? Surely that is enough to get help?) Then list how it is impacting your mental health and ability to cope. Of course your husband denies there is a problem - that is part of his condition, how do they not know this? I really hope you get some help soon, it is a nightmare for you.

The Dementia consultant seemed really nice when he visited to do the tests, back in April. He listened to me which is why OH was put on mediation. Unfortunately it didn't work so prescription wasn't repeated. Not sure why no other meds were tried but I'll ask tomorrow. DC did say it was going to be a long road. I mentioned the abuse in front of OH which he didn't deny. DC did say abuse could escalate due to the frontal affected from stroke and to consider care homes for the future. (Obviously away from OH's ears) So hopefully I can get some real help now.

 

[JaxG]

It is a surprise that some SW, who deal with people with dementia, don't understand how dementia works!! It sounds like the DC might be supportive, good luck tomorrow. xx

 

[jay6]

It is a surprise that some SW, who deal with people with dementia, don't understand how dementia works!! It sounds like the DC might be supportive, good luck tomorrow. xx

Thanks Jax xx