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husband very ill and i am sad /scared

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aprilanne Sat 13-Dec-14 11:12:07

hi i realise this may be in wrong place 47 year old husband was diagnosed with bi polar /manic depression at the start of the year after a very long time of being ill then some recovery .well i thought we will cope as best we can .he lost his job everything after 30 in same firm .the only job he ever had .he now gets sickness money from government ..the poor man has been getting worse no memory /aggression .getting lost on simple journeys /terrible shaking .well on wednesday he was diagnosed with early onset DEMENTIA.i am shattered i just feel terrified for the children not babies thankfully .late teens .but i feel he is a young ish man how the hell are we going to live with this .he told me just to leave him .not that i would after 25 year but no point kidding .i don,t feel angry at what my life will probably become .i think i am sad because my mum died just last year so my life seems to just collapsing about me .my inn laws are just trying to ignore the fact .they just make a joke of it all .i know there is nothing i can do to change the situation but i am so scared .any advice from anyone would be greatfully recieved thanks .

FedUpWithOcado Sat 13-Dec-14 11:19:32

You must be absolutely terrified, my heart goes out to you.
There's nothing I can say to make it better, but they are making immense strides in Dementia research and treatment at the moment.
Please contact the Alzheimers Society, I have found them to be very supportive.

ArchangelGallic Sat 13-Dec-14 11:20:55

Hi april

I can't really offer any advice but I really sympathise with your situation.
Moneywise, you may be able to get a disregard on your council tax assuming you and your husband are only 2 adults in property (SMI discount 25%).

I'm going to report this and ask HQ to move it to a more appropriate section where people will give better advice. AIBU - am i being unreasonable- can be a bit of a bunfight sometimes!

Hatespiders Sat 13-Dec-14 11:22:14

Couldn't pass by without offering you a big hug and my prayers, Aprilanne. You poor poor lady. This is an enormous load for you to bear.
I'm wondering if there are any early onset dementia support groups where you live? Others in a similar position will be of immense help to you in the coming months. A lady I know has a husband (aged 52) suffering from the same illness. She has support like this and her dh goes into a daycare centre one full day a week, where he has company, stimulation with games, songs etc and is looked after very well. His dw can go out, see her friends, go shopping and so on.
Your in-laws' reaction is terrible. Maybe they just can't accept what's happening? Try to put them to one side in your head for now, you have enough to cope with.
I'm also so sorry about your mum. You must feel life is chucking things at you like a coconut shy.
Hope others will be along in a minute with better advice, but I just wanted you to know I care. x

ArchangelGallic Sat 13-Dec-14 11:22:24

Oh, and if he hasn't already done so, make a claim for DLA and consider a power of attorney for you.

allypally999 Sat 13-Dec-14 11:22:55

I am so sorry to hear your news flowers. You are bound to feel scared and sad as this is a hellish hand you have been dealt. Do you have friends you can rely on? GP? If not I'm sure there are charities you can call for help. If its Alzheimers the Alz Society are really nice and will give lots of advice and support (we used them loads with my Dad and they were great). Take all the help you are offered - people will really want to feel useful to you.

I hope the in-laws come round and support you. Sorry about your Mum too - its all too much at once for one person.

The only "glass half-full" thing I can say is at least the children are older and hopefully you will help each other through this. My heart goes out to you but that's no help.

There are a lot of nice, caring people in here - maybe someone else can be more helpful.

aprilanne Sat 13-Dec-14 11:43:26

thanks everyone .i have never thought about the alzhemiers charity .i thought that was just for the elderly but thanks i will give them a phone on monday
.money wise its ok we bought our house in 1990 ex local authority .in scotland so cheap .we are not flush but with carefull budgeting we get by ..

archangelgallic .that is the bit that is hurting the most .the fact i know i will need to get power of attorney for a 47 year old man .

on a lighter note our middle son said last night to his father .hey we will be able to get a loan of money of you and not pay you back because you will forget about it tommorow .

rockpaperscissorsstone Sat 13-Dec-14 11:51:52

Hi April,

I'm sorry to hear that things are tough... You and your husband must be finding his diagnosis hard to come to terms with. The advice about council tax discount, dla and power of attorney are spot on. Alzheimer Scotland are a fantastic organisation and can offer you both help and support. They are not just for alzheimers, but all types of dementia, and all ages. Also, its worth googling to see if there is a carers centre in your area? They can again help with support and also with the financial stuff.

Ketchuphidestheburntbits Sat 13-Dec-14 12:07:21

I'm so sorry to hear about your husband's diagnosis.

I second the advice about the Altzheimers society where there is a national helpline available that will give support.

Have you seen a dementia specialist? There are many different types of dementia and in many cases there is medication that can be taken to slow the progress of the disease depending on what the cause is.

Ceasre Sat 13-Dec-14 12:14:40

So sorry to hear this but it is amazing what we can cope with if it is thrown at us. And humour is essential so well done your son.

Slutbucket Sat 13-Dec-14 12:16:23

This has happened to a member of my family. Alzheimer's society were brilliant, helped with getting the right benefits and gave loads of support. Has the diagnosis of bipolar been changed to dementia or is he classed has having both?

aprilanne Sat 13-Dec-14 12:17:25

thanks ketchup .we got the initial diagnosis on wednesday .we are to go and see another specialist next thursday .who will tell us the specific type of dementia and explain treatment options .she said going through it all at once was probably to much to take in .i am trying not to google because its terryfing .the earlier you get dementia the worse it seems to be .

aprilanne Sat 13-Dec-14 12:23:28

slut bucket .i think it,s a dual diagnosis .but not sure because you attend old age pyschiatry for the dementia .and under 65 pyschiatry for the bi polar .but maybe in future they may not be able to tell one from the other .possible that bi polar was actually masking the dementia .what ever they call it .he looks like my hubby on the outside .but not the same man inside .

raltheraffe Sat 13-Dec-14 12:24:20

Oh God that is awful.

He will be entitled to PIP and ESA. He should get put in the ESA support group and if ATOS cock up and put him in WRAG you can appeal it.

raltheraffe Sat 13-Dec-14 12:25:42

very bizarre he has 2 pdocs, surely it would make more sense to have one pdoc managing both conditions as certain meds for bipolar can actually make dementia worse.

raltheraffe Sat 13-Dec-14 12:27:47

It is possible he does not have a dual Dx and was incorrectly Dx as bipolar. Having spent 10 years under pdocs (got discharged last year) I had a total of 5 labels applied by one doc and then the next one overturned it and said previous Dx was wrong or I had made a miracle recovery from it.

Can take pdocs a few years to hit on the correct Dx.

whatever5 Sat 13-Dec-14 12:29:01

I'm so sorry for you and your husband. I'm not sure where you live but as well as the Alzheimer's society, there is also a society for people with young onset dementia who may be able to provide some support

You have mentioned that your husband lost his job after 30 years. Did he have a private or company pension? If so I wonder if he would be eligible for early retirement due to ill health?

pudcat Sat 13-Dec-14 12:35:47

Sorry about your husband. You need to get Power of Attourney sorted while your husband is able to agree to it. That sounds harsh - not meant to be. There is also a face book group called Memory People. It is a closed group so that only members can see what you write. I have found it a godsend with my Mum.

Gatheringthoughtstothink Sat 13-Dec-14 12:58:01

I can understand you feeling sad and scared, you're dealing with something hugely unexpected, I hope the appointment throws more light and of course a treatment plan.
I guess you're feeling somewhat blindsided and not able to take everything in. It will take time for adjustments you will find a new 'normal' though it must feel unfair that your family should need too.
Humour is good, though your sense of it may change, laugh when you can cry when you need too. I found soppy films good for stealth tears.

On a more practical note
Crossroads charity offer a sitting service for carers, we used them a couple of times also put in a claim for carers allowance.
You can ask social services to do a Carers assessment, that may attract some support and funding.
It might be an idea to ensure all bills etc are in your name as it will be better for you to know what's what and to keep an eye on things.
Allow people to help, they will want to.

3lovelykids Sat 13-Dec-14 13:11:32

So so sad. My mum has just been diagnosed with it too so I really feel your pain although she is a lot older. If you have an iphone there is an Alzheimer's app you can download with lots of forums and threads for you to get support and advice. I have started using it and it has answered some of my many questions. Sending big hugs and an unmumsnetty hug xxx

DawnMumsnet (MNHQ) Sat 13-Dec-14 13:51:42

Hi aprilanne,

We're so sorry you're going through such a hard time. flowers

Just wondered if you'd like us to move your thread over to our Relationships topic? We're sure there are plenty more MNers who'll be able to offer you advice and support over there.

Just drop us a line if so.

aprilanne Sat 13-Dec-14 13:58:30

thanks everyone .RALTHEREFFE.i think he has two doctors just now because .he was hospitilised last year in physci ward .but because his memory started to go they referred him to old age physciatry .they treat them as diffrent conditions i think because dementia so rare in someone so young .WHATEVER 5 .yes my hubby has a private pension but not eligible usually until 55 .but the woman fron HR in his former work is going to help us with a claim for early release on disability grounds she thinks he will have a good chance of getting it .but all the money in the world won,t make him the man he was .i would rather be back in the day when we were young and skint .but he was healthy .

whatever5 Sat 13-Dec-14 14:04:11

aprilanne Yes, I also think he will have a good chance of getting it (I have looked into this for my own pension as I have MS and also may have to take early retirement). I'm not suggesting for a minute that being able to take a pension makes things better but it is one less thing to worry about.

Superworm Sat 13-Dec-14 14:33:04

So sorry about your DH's diagnosis. It must be a very unexpected and frightening for you all.

I've worked with families with early onset dementia and highly recommend getting an admiral nurse to support you all. They are specialist dementia nurses and fantastic. They will be able to liaise and advocate for you.

Sending you thanksthanksthanks

x2boys Sat 13-Dec-14 18:07:30

Hi I, m a mental health nurse I worked in inpatient dementia care for many years I,m so sorry for your husband's diagnosis I have nursed a number of patients with early onset dementia there maybe a support group.for relatives in your area admiral nursed were a great source of support for relatives however I know in my trust they discontinued the service due to funding ,you may well.find that your dh never actually had bipoler and it was all part of the dementia, there are many different types of dementia as a pp said there are medications that can slow down the symptons for a period of time but they only work on certain types of dementia I,m sure you will find out more when you see the psychiatrist.,

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