First my mother, now my brother

[carolebeech]

Thankyou so much for all the suggestions. I have had the advice of our Solicitor over funding and we definately will not get any help due to our savings. We did not qualify for carers allowance for my Mum though she gets Attendance Allowance. Mum has financial help via direct payments and we have a carer in every morning to shower and dress her. They are a godsend but cost twice as much more than Social Services pay per hour so we can’t afford any more than an hour a day. I find dealing with Mums other needs is fine and she is doing well and to some extent is a relief from the growing upsets with my brother’s state. I don’t think my brother will accept anyone coming in to help him as currently he is able to take care of himself and is not recognising how poorly he is.

The main problem is trying to get medical help for my brother as at times (morning & evening are worse) as he is highly agitated and dillusional about taking medication. His memory is virtually non exsistant and he can forget something from 5 mins before plus mixing his past experiences with the ‘now’. The memory issues and more will probably be with us forever but he also has is a physical symptom that I am sure not normal even in dementia. I can only call them ‘wobbles’ were he seems to lose himself even more, his eyes roll or dart everywhere, he is unable to control his limbs and if he does speak he talks nonsense. These episodes last between 30 seconds and a couple of minutes and are always forwatrned by a sharp in take of breath. When he talks about them he says it’s like he is trying to make connections in his head but it just moves out of reach. He can have 5 - 10 of these episodes in an hour then non for a while.
Is this normal with dementia? I spoke to the Doctor about them and he is having more blood tests next week. He has had a blood & urine test every week but nothing seems evident. I hope these episodes are not mini strokes but don’t know how to get them medically checked other than keep asking the Doctor.
Any thoughts anyone.
Thanks

 

[canary]

I must say that this does sounds like a small seizure. People with dementia are more likely to develop seizures, especially once they get to the more advanced stages. I think the idea of trying to film them on your phone is a good one.


BTW, as there has been a fair amount of discussion about self-funding, I thought I would explain the rules.
In your case the house will be disregarded, so it will only go savings. Only the saving of the person receiving care count - anything in anybody elses name should not even be looked at. If that person has savings in their name (or 50% of joint accounts) that are more than £25,000 then they are self-funding.Below this level then the Local Authority will start to contribute. Once the savings get down to £14,000 then the Local Authority will be contributing their maximum amount.

I am assuming that you are eligible for carers allowance as you are now receiving state pension. If that is not the case then I think you should get Carers Allowance. Savings and receiving a private/occupational pension dont count. I am below the state pension age and although I receive an occupational pension I am still eligible for Carers Allowance.

The rules confuse quite a lot of people even solicitors and Social Workers, who you would think would know.

I thought I would tell you the rules because of this

The main problem is trying to get medical help for my brother as at times (morning & evening are worse) as he is highly agitated and dillusional about taking medication.

I think it very likely that soon you will need to get carers in to help with medication and I dont want you to be using your own funding.

 

[carolebeech]

I must say that this does sounds like a small seizure. People with dementia are more likely to develop seizures, especially once they get to the more advanced stages. I think the idea of trying to film them on your phone is a good one.


BTW, as there has been a fair amount of discussion about self-funding, I thought I would explain the rules.
In your case the house will be disregarded, so it will only go savings. Only the saving of the person receiving care count - anything in anybody elses name should not even be looked at. If that person has savings in their name (or 50% of joint accounts) that are more than £25,000 then they are self-funding.Below this level then the Local Authority will start to contribute. Once the savings get down to £14,000 then the Local Authority will be contributing their maximum amount.

I am assuming that you are eligible for carers allowance as you are now receiving state pension. If that is not the case then I think you should get Carers Allowance. Savings and receiving a private/occupational pension dont count. I am below the state pension age and although I receive an occupational pension I am still eligible for Carers Allowance.

The rules confuse quite a lot of people even solicitors and Social Workers, who you would think would know.

I thought I would tell you the rules because of this

I think it very likely that soon you will need to get carers in to help with medication and I dont want you to be using your own funding.

Hi Canary thanks for the info. I am only 62 and 5 years away from State Pension and have just applied for Carers Credit so that my National Insurance gets paid. (3rd Class) for looking after my Mum full-time. When Mum first came out of hospital 2 years ago I tried for Carer’s Allowance but did not qualify. No one told me about Carer’s Credit so I have missed out on a years contribution as you can only back date for 1 Year. With my Brother because he has not had any diagnosis of his condition plus he probably won’t be deemed unable to look after himself. Currently he can dress, wash and cook for himself though gets very confused about where things are I don’t think we would qualify for Attendance Allowance. It would rely on on Doctors evidence which is just not happening.
I do think there must be many other people out there who miss out on help not just financial but advisory of how to deal with things because of the so called system rules. Humanity has disappeared from the system. I know there has to be cut off points and fixed limits but it seems like we are being penalised for working hard all our lives, saving hard for our Future and not asking for anything from the State. Up until recently we have not even seen our Doctor above maybe once every few years. And as my brother proudly said he has never been in hospital since the day he was born 67 years ago. And all we want now is guidance of how to access treatment & care.
Thank goodness for this Forum and the care and kindness of people like you.
Thanks

 

[canary]

You would be surprised what counts for Attendance Allowence. Even watching over them to make sure they are OK will count towards it. Its a horrible form to fill in and its very easy to underestimate their needs. I got Citizens Advice to give me a hand with filling it in and was amazed at what counted. You could try getting CAB or someone like Age UK to help you fill it in for your brother. You dont need doctors evidence (at least, I didnt).

I do think there must be many other people out there who miss out on help not just financial but advisory of how to deal with things because of the so called system rules.

I totally agree. Its all so confusing and people are often told wrong information - especially when it comes to benefits and funding. I have found more help and support on this forum than anywhere else. People here know things that even experts dont know.

 

[Rosettastone57]

You would be surprised what counts for Attendance Allowence. Even watching over them to make sure they are OK will count towards it. Its a horrible form to fill in and its very easy to underestimate their needs. I got Citizens Advice to give me a hand with filling it in and was amazed at what counted. You could try getting CAB or someone like Age UK to help you fill it in for your brother. You dont need doctors evidence (at least, I didnt).


I totally agree. Its all so confusing and people are often told wrong information - especially when it comes to benefits and funding. I have found more help and support on this forum than anywhere else. People here know things that even experts dont know.

I applied for AA for mother in law and I'm sure I didn't need a doctor input. Perhaps the rules have changed

 

[Susan11]

Try Age UK or CAB to help you. I think there are certain "trigger" words or phrases that it's good to use . I didn't use a solicitor for Mum and Dad's . Best wishes Susan

 

[canary]

By the way - is your mum receiving Attendance Allowance? Im sure she should be.

 

[carolebeech]

H

By the way - is your mum receiving Attendance Allowance? Im sure she should be.

thanks yes we got that sorted a year ago.
It certainly helps with carer fees and I would have to say with the cost of incontinence knickers.
Could start another rant about the so called ‘incontinence clinic’ we have in our area. The phone contact is an automated line. You leave your address and they sent pads. I can’t believe the miss naming of such a dire service.
Think I will start another thread as of all areas in this minefield of dementia and incontinence as I feel I am becoming such an expert in incontinence support and care. When we first started I was so nieve.
Again thanks everyone for the support. It is so good to ‘Talk’
CaroleBeech

 

[canary]

Im glad your mum is getting Attendance Allowance
Are you not eligible for Carers Allowance because you are receiving state pension, or because you are working?

At least with our incontinence clinic there is an actual person on the other end of the phone when I phone up for more supplies.

 

[marionq]

H

thanks yes we got that sorted a year ago.
It certainly helps with carer fees and I would have to say with the cost of incontinence knickers.
Could start another rant about the so called ‘incontinence clinic’ we have in our area. The phone contact is an automated line. You leave your address and they sent pads. I can’t believe the miss naming of such a dire service.
Think I will start another thread as of all areas in this minefield of dementia and incontinence as I feel I am becoming such an expert in incontinence support and care. When we first started I was so nieve.
Again thanks everyone for the support. It is so good to ‘Talk’
CaroleBeech

Didn’t your mother have an initial meeting with the incontinence nurse to discuss her needs? We did and when Johns needs changed I was able to phone her and discuss. She changed the order there and then for me.

 

[carolebeech]

Didn’t your mother have an initial meeting with the incontinence nurse to discuss her needs? We did and when Johns needs changed I was able to phone her and discuss. She changed the order there and then for me.

Hi my Mum was 91when she had a really bad fall hitting the back of her head. She had 2 major bleeds on her head along with this and within a day in hospital she fell out of her hospital Bed and this was not observed for nearly 2 hours. ( it was a Sat night and the staff had drawn the curtains round her bed) following this fall she had to have several sttches in her skull and it accelerated the bleeds. The consultant gave us no hope and said she would be permantly brain damaged and would never walk or have much body movement. The ward staff started to use inconvenience pads from this point onwards for her 9 week stay in hospital. My brother and myself were determined to try and revive her and we spent 7 hours a day at the hospital encouraging her recovery. We kept hitting very negative ageism ( they just saw the 91age and really rote her off). We took photos of all stages of her life, took card games and dominoes ( she loved them) and best of all song sheets of 30’s & 40’s songs. Her recovery has been amazing and though she needs assistance she can walk shor5 distances with just a stick and could enter zimmer Grand Prix. She does pottery once a week and has taken part in a few exhibitions. BUT the incontanance nurse/community sister who came to advise us for over an hour just described her problems with the job, the fact she had been off work for 8 weeks with stress and Sid that once incontinence was established in the over 90’s there was no going back.
I researched everything I could on bladder and toileting control and we have made great progress in that when she came out of hospital she hadn’t double incontinence but now recognises when she needs the toilet to pass motions. I use pull up pads and a separate liner that I change frequently so that she is not sitting with damp pads on. This has virtually stopped her getting UTI’s which she had continually in hospital and when she first came home. We did go to meet the incontinence team last summer it seemed they were changing supplier and it was an information event. I got told off about using pull up pants and a separate liner, was informed that they could not supply the same level of pull up pads I was buying. Apparently I was doing everything wrong even though we had made progress over my Mum’s toilet habits and her not developing UTI infections. The phone number given for future contact as I said is totally automated and though I have tried going through other channels you cannot get to speak to anyone in the Clinic.
Sorry about above but this rant is so near to my biggest frustration with NHS lack of old fashioned care and must lead other uses equally distraught and open to infection.
Thanks

 

[canary]

I feel your frustration. Unfortunately, there is very little support for dementia and their carers and what little there is is mostly seen as "social care" and is seriously strapped for cash. You have done very well with your mum.

Im sorry if you see me as banging on about benefits and allowances, but the system is so confusing and most of the things available have to be paid for (or at least topped up) by either you or the Local Authority, so that it is really important to know what you are eligible for. I am really concerned for you because I have a feeling that you could be getting more support, but either through misunderstanding, or poor advice, you feel that you are not eligible for things that Im pretty sure you would be.

The normal advice on here is to ask Social Services for a needs assessment (both for your mother and also for your husband) and find out what they can offer. From the way you have described your husband I think he would do very well with day care which would stimulate him and give you a bit of space. Most day care places have to be arranged by Social Services. Once things have been identified (and only then) there would be a financial assessment by someone from the Local Authority who really understands the rules. The person who did my OHs assessment was actually very nice and filled us in on things I did not know about (all to our advantage). After this you would be told how much (if anything) your husband or mother would need to contribute. Please dont go on what other people say you will have to contribute - even Social Workers often get it wrong.

There are other things that can help like a befriending or sitting service, but you usually have to pay for this (which is why you need to make sure you are getting your full allowances)

OK, Ive said my two penn'eth, so Ill shut up now.

 

[marionq]

Carole I have had another thought about your incontinence nurse. Ours is often out of the office seeing clients in their own home and so like you I have to leave a message on her answerphone. If I do then I ask her to phone me back and she does the same day sometimes in her lunch hour. The ordering service for pads is automated but that's the supplier and not the Clinic. The nurse of course can only work with those products which have been agreed with the supplier. I know you're under pressure with your mother and brother but the service is invaluable and best of all it is free.

 

[MaNaAk]

Thanks so much Susan. Great someone is listening. I just love my mum to bits her lovely smile keeps me going. Even though she has been diagnosed with dementia she still loves her son... who now seems to have same condition. She is 92 and as she will tell you has all her own teeth. My so big worry is getting medical help for my brother. It’s as if no one is listening. Even A&E discharged him. Tonight he has had 11 episodes were he is not aware for at least 1.39 mins. What do I do ! To get anyone to listen.
Thanks again for replies
Carolebeech

Dear Carol,

I'm sorry your in this situation but like Pete, I suggest you contact your GP and ask them to give you details of your local carers hub. They can suggest care companies to you and respite care.

Hugs

MaNaAk

 

[MaNaAk]

You would be surprised what counts for Attendance Allowence. Even watching over them to make sure they are OK will count towards it. Its a horrible form to fill in and its very easy to underestimate their needs. I got Citizens Advice to give me a hand with filling it in and was amazed at what counted. You could try getting CAB or someone like Age UK to help you fill it in for your brother. You dont need doctors evidence (at least, I didnt).


I totally agree. Its all so confusing and people are often told wrong information - especially when it comes to benefits and funding. I have found more help and support on this forum than anywhere else. People here know things that even experts dont know.

I filled in this form wrongly and ended up getting dad the lower rate so if you have to get up for either your mum or your brother in the night make sure you get the higher rate!

MaNaAk

 

[Auckland]

Hello I am new to this forum and though I have been watching for a while, I joined last night. I use an iPad and have found some difficulties navigating how to post threads etc. I am sure I will get the hang. But any tips will be greatfully recieved.

Like everyone I can’t quite believe I am in this situation and mostly, I am making it up on how to deal with it. Firstly my 92 year old mum has vascular dementia and needs 24/7 attention. She lives with my brother and myself (we are in our 60’s)and we all share a lovely home. Neither my brother nor myself are married or have family to call upon. We have a couple of good friends and that’s about all I can call on for emergency help. On New Year’s Day my brother (aged 66) woke up lost.


It seems he also has developed Vascular Dementia but at an alarming rate. (The Doctor cannot officially diagnose this and is somewhat shocked at the speed of decline) Trying to get emergency appointment at the Memory Clinic is just not happening and they have just confirmed the 28th March. A life time away with the rate he is deteriorating everyday. He has totally lost any present awareness can’t really retain anything said or experienced. The last 10years of his life seemed to have been wiped and he just continually mixes days and events from the past with the now. We are self funding so I can’t nor do I trust any help from Social Services after their involvement with my mum. They have abandoned Mum since we went for Direct Payments no health checks or social service contact about her welfare.

Any tips on how to deal with my brothers decline would be gratefully received. He is very hyper-active, continually asking questions or talking mostly about things that did not happen (maybe they are from the past) as if they are current. It is not just one memory but as if his whole past life is cascading through in mind, all jumbled with the present. Mostly I deflect or try to re-direct him but this does not always work. He also engages with my Mum into this surreal world and confuses her more. Sometimes she joins in with the fantasy and I am left feeling the one who has a problem with reality. I am exhausted with his energy and as he seems to have lost directing himself follows me around constantly.

The worst moments are at bed-time when my Brother starts hunting for tablets he must have taken in the past. He gets obsessed with trying to find them, turning all lights in the house on and search cupboards and drawers getting more frustrated and annoyed as I can’t help. It can take over 2 hrs before I can get him upstairs to bed and even then he continues throughout the night hunting for these non-existent tablets. I have tried lots diversions but to no avail. I don’t think a placebo would work as he does take some prescribed tablets in the evening already. I also have a letter from the Doctor listing his medication plus telling him not to take any other tablets. This still does not satisfy him. Mornings are also a problem with the same search but I am able to deflect him more with going for a walk or sorting breakfast out.


At the moment I am exhausted both through the situation, lack of sleep and the seeming lack of support from the NHS.

Any tips or suggestions I would welcome.

Thanks