Advice please

[sah]

Ok -I'll try to simplify this!

I have cared for OH for the last seven plus years-Early Onset diagnosed when he was 59. Have LPA for finances but not for Health

Recently-new carer's assessment. The social worker felt it was time for me to start a managed move into care for OH -before we hit crisis point. So-I have spent the last few weeks looking at homes and have finally found one locally with spaces which would really suit him.

All going Ok until I rang his CPN this afternoon. ( I presumed she had been kept in the loop by social worker -found out she hasn't) This has been a very hard and emotional process....we've only been married for 9 years so it's been a bit of a rollercoaster to say the least!

I've had to resign from my job this month as could no longer cope with stresses of both ( was HoD in Senior School.) This means I've had to take pension 7 years early and my income is now 25% of what it was. I'm still teaching one day a week but will have to do more to survive. CPN just said that's what a lot of people have to do.

CPN is very anti. Says I can't just put him into care and is insisting on capacity test. That OH has rights. I tried to explain that I knew that - but haven't we also? That if I broke down, what wuold happen? She began talking about care packages coming in to home etc-but that would not take the stress away. I suffered from cancer four years ago - which my kids are sure was linked to stress-and am concerned about long term effects on my health.The fact that I am very close to breakdown doesn't seem to come into it. I've also reassured my son-who has been my rock through all this- that I am starting to look at care for OH. He still lives with me and his life has suffered as well.

I love OH very much - this seemed a good solution in that I could go and take him out/spend time etc with him but have a life of my own as well. CPN is insisting that he be told what I'm planning-rather than my telling him I had to go away for a couple of weeks and see how he settles.

Brain spinning-don't know what to do now. It was hard enough - and I feel I know him best - but it's not looking even harder than ever. Don't quite know what advice I need - but would appreciate any from those who have more knowledge!
Thanks!

 

[Beate]

Can you get another CPN? This one clearly hasnt got a clue or any sympathy. So sorry she spoke to you that way. You are doing the right thing, and it will be in both your interests, never forget that.

 

[sah]

This is what I don't know. She's looked after OH right from start and has-up until now-been fine. She's insisting OH is told what we're planning even though I told her he would be really upset and react-what I was trying to avoid.

Do we have to have a capacity test? Anyone know?

 

[Chuggalug]

Sah - my hubby had a capacity test, but that came after he went into care. It was, by then, obvious that he was ill. I could have told the pro's he'd lost 'capacity' four years before he was tested.

You very, very need someone who knows what they are talking about. Doesn't sound like this person who has 'advised' you knows what dealing with dementia involves. The endless worry. The constant dealing with endless repeated questioning. Loss of mobility; personal hygiene; what to, and what NOT to, throw in the various bins. Whether the gas has been left on or not, not forgetting the taps!

Safety issues that arise that were previously taken for granted, or not knowingly needed. I'll bet we could all each write a book on what we've often been forced to live through, without support. That doesn't only concern carers, but those we care for, and care about. How dare anyone cast aspersions on your care? Honestly. How dare they.

If you think your loved one needs more care/help than you can now manage to give; you must say so. Social workers are there to at least point you in the right direction. It may be that you simply must put your foot down. The CPN risks having a complaint made about how you were dealt with. Complain if you are not satisfied with what was said.

 

[sah]

Sah - my hubby had a capacity test, but that came after he went into care. It was, by then, obvious that he was ill. I could have told the pro's he'd lost 'capacity' four years before he was tested.

You very, very need someone who knows what they are talking about. Doesn't sound like this person who has 'advised' you knows what dealing with dementia involves. The endless worry. The constant dealing with endless repeated questioning. Loss of mobility; personal hygiene; what to, and what NOT to, throw in the various bins. Whether the gas has been left on or not, not forgetting the taps!

Safety issues that arise that were previously taken for granted, or not knowingly needed. I'll bet we could all each write a book on what we've often been forced to live through, without support. That doesn't only concern carers, but those we care for, and care about. How dare anyone cast aspersions on your care? Honestly. How dare they.

If you think your loved one needs more care/help than you can now manage to give; you must say so. Social workers are there to at least point you in the right direction. It may be that you simply must put your foot down. The CPN risks having a complaint made about how you were dealt with. Complain if you are not satisfied with what was said.

Thank you -it's such a relief to have someone who gets it! It's the first time anyone has made me feel like this-she's previously been very supportive. I tried to explain that -what happens if I simply can't do this any more-and I just got told there were loads of things I haven't tried such as day care ( he's always refused) respite( I think coming and going will confuse him more) -oh, and a care package at home !( How would that help me? It would still be in my home!)

I was thunderstruck and made to feel that I was being totally selfish which is so hard when this is such an awful move to contemplate. Yes-he would cope at home with support-if he was on his own-but that ignores the impact on the family's well being. I know he's not quite 'there yet' -but the advice to move him before we had a crisis seemed to me to make sense. Now I feel pressured-an awful person- and very down. I had no support even when I was having chemo four years ago-kept going-to get this.

Poop

 

[Chuggalug]

Thank you -it's such a relief to have someone who gets it! It's the first time anyone has made me feel like this-she's previously been very supportive. I tried to explain that -what happens if I simply can't do this any more-and I just got told there were loads of things I haven't tried such as day care ( he's always refused) respite( I think coming and going will confuse him more) -oh, and a care package at home !( How would that help me? It would still be in my home!)

I was thunderstruck and made to feel that I was being totally selfish which is so hard when this is such an awful move to contemplate. Yes-he would cope at home with support-if he was on his own-but that ignores the impact on the family's well being. I know he's not quite 'there yet' -but the advice to move him before we had a crisis seemed to me to make sense. Now I feel pressured-an awful person- and very down. I had no support even when I was having chemo four years ago-kept going-to get this.

Poop

Oh, I've lived through the empty promises of help. I was once threatened by someone I'll not mention. Virtually called a liar in my own home by another. I had a terrible tantrum with someone else because I was sick of having been abandoned for 6.5 years with a man who had a brain sickness. He's completely transformed now under full time care, and it did take a crisis for him to get that care. He had to break his blardy hip before anyone started taking notice. And from that point on, we were both carried by some very special people from my local hospital. So yeah, I've lived the nightmare, somewhat. To the point where I was feeling so dreadfully useless, friends here had to give me a virtual kick up the...yeah - to get my head back in line with proper thinking. I upset some good friends by my responses on my own thread, but they never left me. Got righteously and lovingly fed up with me, but never left me. God bless them all.

Don't allow the pressured thing to continue if you can help it, sah. Very easy to say from behind a screen, my friend - especially as I know there's so little help even when we do ask. I hope they don't dare put you through the hell I was put through, although by now, it seems you've already had your unfair share of it. Sadly, sah, yup. I do 'get it' all too well. Get ahold of the Alz Society's team if you have a local one. Some lovely bright and caring person is gonna come on here and pop a link on for us!

Don't stop pushing for care, sah. It's not a self pity thing, it's to get things on an even keel for a loved one who is sick with a brain disease. Ever need a shoulder, you know where I am.

 

[canary]

Would you be self-funded? My guess from your post is that you would not.
If you are not self-funded then basically you have to prove to SS that a CH is what is needed - and this can be very hard as it will cost SS. Therefore they will almost always insist that you go for carers 4 x a day first and will only consider CH when this actually fails.

 

[Jinx]

Sah, before my husband went into respite our social worker insisted on doing a capacity test and discussing with him whether he wanted to go. Fortunately it was very quickly evident that OH hadn't got capacity and all was well. What I don't understand is why when we were told two years ago that there was no capacity, they insist on doing the test every time I need OH to go into respite. It's hardly likely he is going to regain capacity bless him!


Sent from my iPad using Talking Point

 

[Chuggalug]

Sah, before my husband went into respite our social worker insisted on doing a capacity test and discussing with him whether he wanted to go. Fortunately it was very quickly evident that OH hadn't got capacity and all was well. What I don't understand is why when we were told two years ago that there was no capacity, they insist on doing the test every time I need OH to go into respite. It's hardly likely he is going to regain capacity bless him!


Sent from my iPad using Talking Point

Makes me wonder if that test is a legal necessity, Jinx? It might well be. It's a pain to have to do it every time though. I do understand that. I wonder if a social workers notes also get put on the medical record at surgery or hospital? Never did know whether that happened, or not.

 

[sah]

Thanks all for replies...must admit this place is a godsend. I didn't sleep last night and felt wrecked...so fed up with feeling like that.

We will be self funding for around two years...which helps. I spoke to my social worker-spot on 8 this morning -who was wonderful -she's very much on my side. I told her that I felt harangued and was amazed at the way I was spoken to ( didn't add the expletives I had been muttering under my breath....)

Saw the care home manager this morning and we're starting going there for day care every Friday and then see how things progress...hopefully book in some respite soon and see where that leads.

I got an email tonight saying CPN will visit next week and do capacity test. I have just replied to say that the time she suggested is not possible. Quite truthfully- my sister is having a hip replacement that day so I'm not going to faff about when that's happening. I also said that OH is starting day care that Friday.

In the meantime-any more advice is welcome. Thank you all so much.

Sah.

 

[sah]

Oh, I've lived through the empty promises of help. I was once threatened by someone I'll not mention. Virtually called a liar in my own home by another. I had a terrible tantrum with someone else because I was sick of having been abandoned for 6.5 years with a man who had a brain sickness. He's completely transformed now under full time care, and it did take a crisis for him to get that care. He had to break his blardy hip before anyone started taking notice. And from that point on, we were both carried by some very special people from my local hospital. So yeah, I've lived the nightmare, somewhat. To the point where I was feeling so dreadfully useless, friends here had to give me a virtual kick up the...yeah - to get my head back in line with proper thinking. I upset some good friends by my responses on my own thread, but they never left me. Got righteously and lovingly fed up with me, but never left me. God bless them all.

Don't allow the pressured thing to continue if you can help it, sah. Very easy to say from behind a screen, my friend - especially as I know there's so little help even when we do ask. I hope they don't dare put you through the hell I was put through, although by now, it seems you've already had your unfair share of it. Sadly, sah, yup. I do 'get it' all too well. Get ahold of the Alz Society's team if you have a local one. Some lovely bright and caring person is gonna come on here and pop a link on for us!

Don't stop pushing for care, sah. It's not a self pity thing, it's to get things on an even keel for a loved one who is sick with a brain disease. Ever need a shoulder, you know where I am.

Thank you so much - shoulders are very necessary in all this! xx

 

[Chuggalug]

Thank you so much - shoulders are very necessary in all this! xx

I know it. Just bung me a PM if you fancy a chat at any time You're more than welcome, sah.