I am back again

[SoAlone]

Hi all, I haven't posted for a while, we have been jumping through the hoops of getting a diagnosis. OH has been diagnosed as having Late Onset Alzheimers and as it appears quite early in the journey he has been prescribed Donepezil which seems to be tolerated OK. I have a few questions the wonderful people on here will probably have an answer too, so here goes.
1. He receives Lower Rate Attendance Allowance which he has had since COPD means he needs care. My GP said I shouldn't now consider leaving him alone overnight although I do still work 3 days a week. Would I qualify for Higher Rate now, I have been frightened to ask in case we lose what we have.
2. OH is fixated on fact that he has lost his driving licence. DVLA revoked in July. But OH blames his GP and refuses to have anything to do with him threatening to get him struck off for taking his licence away. I have supplied DVLA with copies of all diagnosis letters and asked them to consider an Assessment but they haven't replied and when OH rings, they blame the doctor, saying he must say OH has recovered, which he can't and doctor blames them. No-one visits any more because it is all OH talks about. I have tried everything but he won't let it go. Any ideas?
3. He is very angry and spiteful towards me, everything up to and including world peace is my fault.He is not violent, beyond banging on tables and slamming doors but I find it hard to tolerate day in and day out . I am seeing my own GP to tell her I am struggling because when memory Clinic staff call he is on his best behaviour and instructs me not to tell them anything. Again any coping ideas?

Sorry to go on but this is the first opportunity I have had to post for months, I am either at work or he constantly wants to know what I am doing. I find it difficult to find time to myself to pee, never mind shower.

Feel better for just letting it all out. I know my situations is minor to what some of you deal with daily, so thank you for listening

 

[cuppatea]

Oh my goodness poor you! How on earth do you manage to work? Sending hugs, I am dealing with 2 and 3 above and have got 1. Hope someone else with more experience can offer help just sending sympathy

 

[sah]

It appears that you are moving into the time when no one person can cope alone: please don't punish yourself for that-I did-and tried to carry on until I had a complete breakdown. That's no good for you or him.

1)Memory clinic: Keep a note of everything that happens -send this to them before a meeting. Explain that he tells you not to tell them things. This avoids you having to say anything in front of him-and will save you the conflict. Be honest -you're not doing him or you any good by keeping things back!

2) Contact social services and ask for an updated carer's assessment. They have a duty top support you as carer. It may be they can finace/help with day care to start with -or carers to come in. My OH wouldn't -initially-have carers in the house-so we told him they were cleaners to help me.

3) See someone for financial advice - I can't imagine that you would lose your allowance but it sounds as if you should be getting the higher rate. You'd also get advice about how the financial side of care -how to make sure you are still secure.

I am sure others will add more advice - keep posting but do look after yourself!

Good luck!

 

[Casbow]

Oh dear I am so sorry. What a difficult time. I don't know about Attendance allowance. I believe most carers can apply. Not sure why we get it. I get the lower rate as I am a full time carer. I cannot have the higher rate as my husband sleeps ok at night. (Touch wood and whistle.!!) When it comes to the doctor taking his driving license would your husband be able to see a different doctor. If that might help. Please do not let him think that he can get his licence back. Be firm. Tell him it isn't going to happen. That you are really sorry as you miss him taking you out, but he is no longer fit to drive. You have to let him see that wearing you down will not work. I had my husband moaning about it and saying he hated the doctor but I never once let him think it might be changed. In the end he just stopped saying anything. I used to tell him that I was the last person to want him unable to drive,as I am not keen on driving but we both had to get on with it.The other thing is maybe you could write to the doctor and the other people at the memory clinic to tell whats he is like (just as you have on here) and then they will know when they see him. Could you lock yourself in the loo and write the letters.? Hope this has helped a bit. Wish you well with everything.x

 

[Beate]

I can only really deal with point 1, but no, he won't lose his entitlement to AA if you ask for the higher rate for him. As far as I'm aware, once you've got it, you've got it for life (our letters from the DWP always contain the word "indefinitely"). The higher rate is for night-time, you ring the DWP and they should supply you with the form, which is much shorter than the first one, seeing as he gets the lower rate already. All you've got to do is tell them what he needs help with at night, how often and how long, with toileting etc, whether he needs watching over him etc. They give you room to add info away from the tick boxes as well. Remember, it's about help he needs, not help he already gets.

P.S. AA is for the person with dementia. Can people please stop saying it's for the carer? That would be Carers Allowance, an entirely different benefit.

 

[Casbow]

Sorry. I know the AA is for the PWD but as I deal with everything including getting him the AA I tend to say 'me' about everything. There is no 'we' anymore. I stand corrected.x

 

[Spamar]

OK, there's no 'we', but his money is for his things, like carers, special things he needs like inco pads and care while you have respite, and eventually, full time care if it is needed. You, your money, should not be paying for these things. It seems to be a common mistake, especially when a spouse is involved.

 

[SoAlone]

Thank you all

Hi all, just wanted to say thank you for your replies. OH hijacked doctors appointment so no progress really made there but will use info to find a way forward. thanks again

 

[Casbow]

Sorry. Don't understand. All our money has always been in a joint account. So therefore He gets everything he needs and wants but I don't write down the cost to see if his attendance allowance has been spent of if there is some left. I never go anywhere or buy myself anything that is not needed. I have spent loads of money in the last few months on incontinence care his money/my money. Should I keep accounts for his AA. I feel like I am being accused of something.

 

[Beate]

I certainly haven't accused anyone of anything, I just wanted people to get the terminology right as there are probably other carers reading these threads who don't know much about those allowances, and I don't want to confuse them about in whose name they should be applied for. I don't think anyone would ask you to keep accounts for his AA. Joint accounts are common with couples though I always advise people to separate their money to make it clear to any authority which money they can assess. In a joint account automatically 50% is yours and 50% is his regardless of who put in more, which could come back to bite one of you when it comes to assessing finances for care. Let's for instance say he has less incoming than you but you pool it all and use your money to spend on his needs, then the LA will think he has more than he actually does and assess him accordingly.

 

[Casbow]

OK I will take my punishment. But i will not make a comment again on anything I do not know enough about apparently. I just used the wrong words. Didn't know it would cause a fuss. If I had to rely on AA for my husbands needs he wouldn't get anything like as much as I try to give him. And it barely covers a weeks respite. So hey If you have a weeks respite I will not be able to buy your inco. supplies. The attendance allowance is not enough for respite and all the bedding I have had to buy and the inco. stuff because the incontinence service cannot supply what we need.

 

[Spamar]

I'm sorry Casbow, I did not mean to criticise you. But when OH went into care, even though he was self funding, I felt it necessary to separate our money. In time he says would have had to rely on LA.
In our case, OH had a regular income and mine was sporadic. So DDs came out of his funds and occasional things, car, holidays, repairs etc came out of my income. Not easy to sort and I doubt if many have that arrangement.
Anyway, it's only by making a fool of myself on here that I learnt what was right, or what I could get away with, in the nicest possible way of course!

 

[Beate]

No one's punishing you, Casbow. I just tried to clear up some wordings and you weren't the only one using it. If I'd known it would cause such a stir, I would not have said it, but at the time I felt it needed pointing out. In a way, it's just additional money to be used on the caree. Where it ends up or what it's spent on its not something anyone is policing.

 

[Rosnpton]

Hi
We had Lowe rate a for mum. When her conditioned worsen,we applied for higher rate. Was backdated to the day they received the paperwork,and took about 6weeks in total from date paperwork received,to date got first payment. Mum now in a care home self funding. I rang the benefits office to let them know, not wanting to be accused of claiming something incorrectly. I was told she would still get the higher rate up to the point her money has run out and the council take over. Only then can she no longer receive it.
Good luck.
Ros

Hi all, just wanted to say thank you for your replies. OH hijacked doctors appointment so no progress really made there but will use info to find a way forward. thanks again

 

[Diannie]

Just a little note re applying for the higher rate Attendance Allowance. My husband receives the lower rate and was advised to apply for higher rate as his needs are now greater. I sent off forms in January and heard nothing since. So telephoned to ask if forms had been received. I was told yes they had but processing claims are now taking 20 weeks.


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[Gnasher]

Just 18 months ago I divided up my money into three separate accounts. Mine, joint and his. Originally it had been mine but to try and get mote interest I did divided it as mentioned. Should I/can I now put the money back into my name without it being questioned later down the line?


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[Diannie]

Gnasher. We had a financial assessment a couple of weeks ago. They wanted to see all bank statements, pension slips and savings etc going back for the last 12 months.


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[Caz60]

OK I will take my punishment. But i will not make a comment again on anything I do not know enough about apparently. I just used the wrong words. Didn't know it would cause a fuss. If I had to rely on AA for my husbands needs he wouldn't get anything like as much as I try to give him. And it barely covers a weeks respite. So hey If you have a weeks respite I will not be able to buy your inco. supplies. The attendance allowance is not enough for respite and all the bedding I have had to buy and the inco. stuff because the incontinence service cannot supply what we need.

Hi Casbow ,
Please don't stop joining in anything you feel you can contribute to, everything becomes clear because we all talk .I think I use the wrong terminology sometimes but so what we all mean well and yes it's important to give correct advice but we all speak up and people in general understand .
Hugs xx

 

[suzabell]

Hi all, I haven't posted for a while, we have been jumping through the hoops of getting a diagnosis. OH has been diagnosed as having Late Onset Alzheimers and as it appears quite early in the journey he has been prescribed Donepezil which seems to be tolerated OK. I have a few questions the wonderful people on here will probably have an answer too, so here goes.
1. He receives Lower Rate Attendance Allowance which he has had since COPD means he needs care. My GP said I shouldn't now consider leaving him alone overnight although I do still work 3 days a week. Would I qualify for Higher Rate now, I have been frightened to ask in case we lose what we have.
2. OH is fixated on fact that he has lost his driving licence. DVLA revoked in July. But OH blames his GP and refuses to have anything to do with him threatening to get him struck off for taking his licence away. I have supplied DVLA with copies of all diagnosis letters and asked them to consider an Assessment but they haven't replied and when OH rings, they blame the doctor, saying he must say OH has recovered, which he can't and doctor blames them. No-one visits any more because it is all OH talks about. I have tried everything but he won't let it go. Any ideas?

3. He is very angry and spiteful towards me, everything up to and including world peace is my fault.He is not violent, beyond banging on tables and slamming doors but I find it hard to tolerate day in and day out . I am seeing my own GP to tell her I am struggling because when memory Clinic staff call he is on his best behaviour and instructs me not to tell them anything. Again any coping ideas?

Sorry to go on but this is the first opportunity I have had to post for months, I am either at work or he constantly wants to know what I am doing. I find it difficult to find time to myself to pee, never mind shower.

Feel better for just letting it all out. I know my situations is minor to what some of you deal with daily, so thank you for listening

Hi Soalone, you are not that. My husband was 57, 3 years ago, when he was told he could no longer drive; it was awful. He went walk about for 3 days only coming back at night. Once he got lost so I had to go and find him. He cut me off so I couldn't reach him atall to talk or reason with himl. He is still angry but it has subsided a bit. He blamed me because I took him to the test. He still gets frustrated in the car that he can't drive but even at that point he was muddled with routes & I wouldn't let he drive alone.
I sympathize with you. I stopped work around that period of time. I try diversion tactics where possible and put music on or the news. In the car I point things out like 'look at that cloud' and look at that bird' or can you put the radio on. Fine for short distances but we have now been advised not to drive long distances as he gets too tired& frustrated & I get tired & less able to cope. I am going to try a bus trip onto a cruise because at least he isn't reminded the whole time about me driving or worried that I am having to do it all.
Did he go for a driving safety test or just had his driving license removed? We went for the test. Atleast he could blame the test people , not the GP.
If my husband is angry I also get a bin out and start throwing paper , screwed up , or balls into it so he can vent his anger in another way, or those velcro hats and balls attached to something. it normally ends in laughter & he forgets what he was angry about. Not easy . We are beginning to have anger about other things now so I have new challenges as well as him being totally confused.
Today we started the day off early and walked with our binoculars. Whenever he started saying how he is getting so much worse I would say 'lets just concentrate on enjoying the birds' Well it worked for most of the day.
Try & refocus on something he enjoys & get it in early before he starts up.
Lots of hugs & know you are not alone.
Suzabell

 

[Trisha4]

Hi all, I haven't posted for a while, we have been jumping through the hoops of getting a diagnosis. OH has been diagnosed as having Late Onset Alzheimers and as it appears quite early in the journey he has been prescribed Donepezil which seems to be tolerated OK. I have a few questions the wonderful people on here will probably have an answer too, so here goes.
1. He receives Lower Rate Attendance Allowance which he has had since COPD means he needs care. My GP said I shouldn't now consider leaving him alone overnight although I do still work 3 days a week. Would I qualify for Higher Rate now, I have been frightened to ask in case we lose what we have.
2. OH is fixated on fact that he has lost his driving licence. DVLA revoked in July. But OH blames his GP and refuses to have anything to do with him threatening to get him struck off for taking his licence away. I have supplied DVLA with copies of all diagnosis letters and asked them to consider an Assessment but they haven't replied and when OH rings, they blame the doctor, saying he must say OH has recovered, which he can't and doctor blames them. No-one visits any more because it is all OH talks about. I have tried everything but he won't let it go. Any ideas?
3. He is very angry and spiteful towards me, everything up to and including world peace is my fault.He is not violent, beyond banging on tables and slamming doors but I find it hard to tolerate day in and day out . I am seeing my own GP to tell her I am struggling because when memory Clinic staff call he is on his best behaviour and instructs me not to tell them anything. Again any coping ideas?

Sorry to go on but this is the first opportunity I have had to post for months, I am either at work or he constantly wants to know what I am doing. I find it difficult to find time to myself to pee, never mind shower.

Feel better for just letting it all out. I know my situations is minor to what some of you deal with daily, so thank you for listening

Hi SoAlone
I know you've had lots of responses so I apologise if I repeat what others have said.
1. When my husband became more demanding at night, getting up and wandering about, I wrote and said so asking if that meant he should get the higher level AA. it was immediately raised to the higher level.
2. Can't help on that one. Husband stopped driving because of cataracts and then decided not to go back to it so it passed much more easily than I had anticipated as it was the on thing he had dreadful losing.
3. My husband has become increasingly agitated and aggressive. The consultant psychiatrist prescribed lorazepam to be given as and when he begins to become agitated, up to 3 times a day. It does seem to calm him a little.
I understand your feeling when he wants to know what you are doing. My husband does not let me out of his sight and there are times I could scream. I have recently employed a carer to take him out 3 times a week just to give me a break.
Keep posting, people on here understand and care.


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