• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Hi, I'm new here and feeling very down

Helped

Registered User
Jul 9, 2019
34
hello @Helped
a warm welcome from me too
a few things have been mentioned by others, so here are some links that may pick up on their suggestions

contact your Local Authority Adult Services to arrange an assessment of your husband's care needs and a carer's assessment for yourself as you both have a right to these (don't discuss your husband's financial situation at this point) ... a care package may then be suggested eg home care visits, day care, respite (this is as much to give you a break as to support your husband, so maybe try ways to 'persuade' your husband to attend day care eg 'I need to have a day to get chores done so it will help me' or he will be a volunteer helper, rather than a 'customer')
a financial assessment will then be organised on your husband's finances only plus half of any joint savings (your home is not taken into account nor are your finances)
https://www.alzheimers.org.uk/get-support/legal-financial/who-pays-care

https://www.gov.uk/attendance-allowance/how-to-claim
when you fill in the forms have in mind your husband's worst days and you may feel as though you are repeating points, but mention everything and be brutally honest (I found it hard to read back after I'd completed for my dad, but it brought home how much support he needed and how much he deserved the AA) .. your local AgeUK may be able to help you complete the forms
https://www.ageuk.org.uk

once AA is in place, contact your Council to apply for a Council Tax disregard in respect of your husband, so effectively you will be charged at single occupant's rate ... and ask if there is a further reduction as you are a fulltime carer

access the Directory of local services on the main AS site
https://www.alzheimers.org.uk/get-support/your-support-services

think of arranging Lasting Powers of Aattorney, for you and your husband, so someone has legal authority to help you both .. of course you can be Attorney for your husband ... worth having 2 to act jointly and severally and a named replacement
https://www.gov.uk/power-of-attorney
 

Helped

Registered User
Jul 9, 2019
34
Thank you so much for this info, I will look into it all. Your help is so appreciated
 

maryjoan

Registered User
Mar 25, 2017
1,420
South of the Border
Thank you, its great to find a 'home' - I always feel guilty if I 'vent' to others
Never, ever, feel guilty - we have to be here for each other - and I am glad you have found us - get the AA sorted - Age Concern or Citizen's advice will help you - then with that and a short letter from the doctor you ought to be able to get a reduction in council tax - we did.
Get on to Social Services as your husband is a vulnerable adult and see how they can assist you.
My OH will not go to groups, so I go out alone and arrange for a carer to come in and be with him
Other people will have lots of ideas ... so stay with us....
 

Olliebeak

Registered User
Sep 13, 2014
138
Buckinghamshire
Welcome Helped. Your feelings reflect so many of us on TP. When life gets tough it’s amazing how you log into the forum and there is someone with very similar issues.

Bit of a tip for claiming Attendance Allowance. Working for Citizens Advice I was taught the key buttons to press are
1. your husband needs help to manage his medication (I has to be reminded to take it or not take it twice)
2. he could not prepare a meal for himself if on his own. And that’s not just heating in the microwave - it’s being unable to make a mail from scratch

Take care of you
 

Helped

Registered User
Jul 9, 2019
34
Never, ever, feel guilty - we have to be here for each other - and I am glad you have found us - get the AA sorted - Age Concern or Citizen's advice will help you - then with that and a short letter from the doctor you ought to be able to get a reduction in council tax - we did.
Get on to Social Services as your husband is a vulnerable adult and see how they can assist you.
My OH will not go to groups, so I go out alone and arrange for a carer to come in and be with him
Other people will have lots of ideas ... so stay with us....
 

Helped

Registered User
Jul 9, 2019
34
Thank you for being so welcoming, I have been overwhelmed with the help and support I have received. I wish I had found this site months ago.
 

Florencefennel

Registered User
Jun 11, 2018
37
Hello Helped, my partner, who has fronto temporal dementia, has also never been a joiner or one for small talk and I am finding it a real problem to persuade him to join any of the groups that Alzheimers Support have in our area. He just doesn’t accept that he needs any help but he does nothing all day, sleeps a lot and gets more confused as the day goes on! I have been reading the posts on here for a while but this the first time I have posted. I haven’t applied for AA or council tax reduction yet, I can’t tell whether he fits the criteria and I think he wouldn’t agree to it.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,166
Yorkshire
hello @Florencefennel
welcome to posting on DTP
I'd really encourage you to look at the application form for Attendance Allowance, you may be surprised, and AgeUK or CAB can help fill them in... I know when I read the forms I realised I could have applied for dad quite a time before I did .. after all, the benefit isn't means tested it is awarded on the basis of need, so everyone who qualifies has a right to receive it
and there is provision for you to apply on your husband's behalf explaining why he isn't making the application himself, especially if you have LPA in place (if not, it would be wise to organise these to make things easier for you in the future)
 

Florencefennel

Registered User
Jun 11, 2018
37
Thank you Shedrech, I will look at the form online, I am trying, with the help of Alzheimer’s support, to arrange for Geoff to have a male companion to go out together, to give us both a break. However, although I do fully understand the need to charge for this service to get the right people, it will be £36 a week for 2 hours and this wouldn’t be easy when we would hopefully be looking at a long term social need for both of us. The Attendance Allowance would certainly help with this.
I find it hard to feel that we have to apply for monetary help as we both have always been independent, what a strange life this has become!
 

Sirena

Registered User
Feb 27, 2018
2,240
I wished I had applied for Attendance Allowance earlier, but I was put off by the copious form-filling. When I applied a year ago my mother got the higher rate, which is now £87.65 a week. You get the higher rate if you need help at night - and 'help' can simply mean supervision or prompting for a visit to the loo. It isn't means tested and it's really worth the pain of any form filling!
 

Helped

Registered User
Jul 9, 2019
34
Hello Helped, my partner, who has fronto temporal dementia, has also never been a joiner or one for small talk and I am finding it a real problem to persuade him to join any of the groups that Alzheimers Support have in our area. He just doesn’t accept that he needs any help but he does nothing all day, sleeps a lot and gets more confused as the day goes on! I have been reading the posts on here for a while but this the first time I have posted. I haven’t applied for AA or council tax reduction yet, I can’t tell whether he fits the criteria and I think he wouldn’t agree to it.
 

Helped

Registered User
Jul 9, 2019
34
Hi, I sympathise with your situation and it is very similar to mine. Jim has never been a joiner either and, whilst he admits that he can't remember much and he knows that he gets confused, he will not accept that there is anything wrong with him that isn't just down to 'old age'. I have no idea whether he is missing out on any medication available because he refuses to talk to his doctor about any of his problems. If I don't take him out in the car every day he will just sit around doing nothing or falling asleep. He does have a bus pass (he used to drive but doesn't anymore and he is quite happy with this) and he is fine going out on his own. I am also waiting for the right time to bring up AA etc - I am not sure how he will react but I am definitely going to raise the matter soon - he knows I am listed as his carer at our surgery and didn't seem to mind so I will discuss it with him soon. I am sure that you are eligible as you have a doctors diagnosis, don't be put off by the form
 

Susan11

Registered User
Nov 18, 2018
2,319
My Dad didn't want to apply for Attendance allowance either but I spent some time explaining that he had paid taxes all his working life and this was one of the things those taxes paid for.
Best wishes Susan
 

tattytwee

Registered User
Jun 10, 2019
22
Hi, I'm new to this forum and have found it a great help and such lovely caring people ,its been a real comfort to me as I try a navigate my way through trying to get the right help and advice for aging parents one with dementia and one that insists he doesn't need any help!
 

Gladys1946

Registered User
Feb 17, 2019
29
Hi all. My husband has also never been a joiner but we now go to two groups in our area. One is Singing for the Brain. Sounds weird but he loves it and I so enjoy the interaction with other wives! Shorthand for joint rants! Today we go to a Men's Cafe based around our local football club. Now dear husband hates football but again when I take him, he then says how much he's enjoyed it. The young apprentice footballers play darts, table tennis and other stuff with the chaps and the leader. We wives go into a separate room to again have a group hug! We laugh and cry in equal measures. So do try to find groups in your area and ignore their grumps when they says they don't want to go. Just take them! I've learned such a lot from my fellow carers. It has really helped.
 

Trekker

Registered User
Jun 18, 2019
206
London
My husband Jim (74) was diagnosed with brain atrophy a couple of years ago. We have no children and no relatives, it is just us. Jim was a mathematician, extremely intelligent and very active hobby sailor but since being diagnosed with Type II Diabetes nearly 20 years ago and a successful operation for bowel cancer 16 years ago, his health has been in decline. He is developing cataracts and will eventually have them removed. He has developed a slow shuffling walk and is a bit unsteady on his feet. He refuses to admit he has any problems at all (although he does admit he cannot remember anything) and will not use any sort of walking aid.

He has become very picky about food and doesn't eat well, it is difficult to eat out like we used to because he leaves so much and it is a bit embarrassing, not to say a waste of money. He tries very hard to do things but looses concentration easily, he mostly sits in a chair either watching TV or sleeping. He does still have a sense of humour though , because he said that at least all the repeats on TV don't affect him has he can't remember how many times he may have seen a program. I do everything around the house, care for him and look after a huge garden. I would love to move to a house without a garden but the thought of the stress of moving and the stress of moving Jim puts me off at present

At the moment I am managing to cope, but I can see the writing on the wall. He has good days but today wasn't one of them! I am sorry that my first post was such a depressed one, but I badly needed to talk to someone and I know I am far from alone in my troubles.
Dear Helped I am so glad you have found TP. We are all here for you. I found TP a short while ago and it has been a life or rather mind saver for me. So many kind people who really understand and care. One of the hardest things, for me at least, is the constant anxiety. It’s like our minds are working overtime trying to anticipate and mitigate against all the things that could at any moment go wrong. Some things we can plan for, others may never happen, mostly we just have to take one day at a time- so much easier said than done. I now come onto TP at least twice a day, it helps me breathe. I hope it can do the same for you x
 

Morganlefay

Registered User
May 20, 2014
78
Buckinghamshire
Hello Helped ! Your OH sounds like mine: having had a senior job at the BBC diagnosed with AD 6 years ago, and not too badly ill then, but resolutely refusing to admit there was anything wrong, or talk about it, even to the doctor. Now he's getting iller more quickly, and the doctor and I have managed to - very tactfully - occasionally discuss his 'memory problem'. He isn't a joiner AT ALL so I can't suggest any sort of a group or meeting. I'm not really a joiner either but I went to our local Alzheimer's Carers monthly meeting a couple of months ago and found it really really helpful, some really nice people there, and all of us at a different stage in our grappling with these dreadful illnesses - is there one of those you could go to ? I have to invent a small lie to go because he likes to know what I am up to all the time - hard for me as we have both always been quite busy and independent..
I'm glad that people on here have given good practical advice (as a result of which I'm now going to look at AA - so thank you everyone) but the harder part I think is the exhaustion of feeling chained to this ill person who is taking over my husband, and having endlessly to predict what he will need. Above all there's overcoming the guilt when I get irritated with him, even tho I know he can't help it. He is having trouble finishing sentences because he loses the words to use though the thought may still be in his head - so agonisingly frustrating for him, but I also find sitting patiently trying to work out what he's saying very difficult; I spend much of the day hovering, waiting, waiting for him to finish what he's saying and although it doesn't sound too bad it is driving me mad. So I have to try very hard not to feel cross, or guilty because I really am doing my very best for him. A day at a time is the only way, and I send you all good wishes in finding a way through all this both for your husband and for you.xxx
 

Reman

Registered User
Jan 21, 2018
27
It is so nice to know that there is someone out there! That makes me feel a lot better.

Beyond the initial diagnosis and some dementia nurses (specialists??) coming to the house to do some sort of assessment, we have had nothing. This may have a lot to do with the fact that the nurses were not very impressive and Jim got irritated, became very uncooperative and sent them away. with a flea in their ear! Quite frankly, I couldn't really blame him, they were totally lacking in tact, diplomacy and talked down to BOTH of us.

He has tablets for his diabetes but that is all.

He can do some things , he has just made himself a cup of tea. OK he missed putting it on the table and it went all over the floor but at least he made it himself! I have never heard of Attendance Allowance so I will look into this.

I doubt he would like day care centres, he has never been one for joining groups and that sort of thing makes him grumpy. He does like me to think of days out for him, and he like me to drive him round in the car most days.

Thank yu so much for being there, I really appreciate it
 

ka7e

Registered User
Nov 10, 2014
4
Somerset
My Council (Somerset) gives 100% CT exemption for my husband as he claims Pension Credit and AA and has a "severe mental impairment" - in the form of mixed dementia.
Regarding the prospect of moving house, have recently moved after 35 years in the same house, and my fear of how he would cope in unfamiliar surroundings caused me huge amounts of stress. I had to do all the house clearance (downsizing), packing and cleaning myself as well as dealing with estate agents, surveyors and solicitors.
Every morning it was a surprise to him to see the "For Sale" sign and then later the "Sold" one outside the house! He took to his bed whenever the move was mentioned and fretted about how much he loved our house.
I put pictures up of the new property and a countdown to the move. Although he visited the new property once and liked it at the time, he couldn't recall it. Several times a day I would run through the pictures and assured him he would have his bed, chair and TV set up in a familiar way.
The day of the move, he was dropped off at my Mother's and the whole move went on without him really being aware he would be returning to a new house.
The first 24 hours were difficult as he had to be shown where the loo was and got confused during the night as the "ceiling was different". But from then on he began to think we had always lived here and has difficulty recalling the old house! The only times he has had confusion is when we return after an outing and he thinks we're at the wrong house - he doesn't recognise it externally but is fine once we get indoors.
I thought he would wake every morning not knowing where he was, but it seems his brain has overwritten 35 years of memories of the old house. It's a relief for me knowing he's just as happy here, but still a sad indictment of the effects of this disease.
 

Staff online

Forum statistics

Threads
115,447
Messages
1,688,953
Members
66,367
Latest member
Uni of Notts iGEM team