Younger people with dementia

CaroleB

Registered User
Oct 28, 2013
9
0
What's PIP??!? Sorry bit blank with this one, thank you so much for telling us that it's really helpful:)
 

sah

Registered User
Apr 20, 2009
332
0
Dorset
PIP-Personal Independence Payment -replaced Disability Living Allowance this year-it's for under 64s.

If you google it,you should go to the DWP website which explains how to apply and gives some guidance about what it is paid for. It's not means tested and is tax free. I should have applied years ago-although I don't think my husband would have qualified in the very early stages.

I know there's a hell of a backlog in getting applications processed-but it may be worth a look.

Sah.x
 

Lovleemummy

Registered User
Jun 13, 2013
77
0
Stoke-on-Trent
Jaymor-I will look into any local cafés. I'm thinking of contacting Approach who I have heard do cafés. It would be nice to speak face to face with people in the same boat.
At the moment I feel like I'm getting old before my time. My hubby and I should be going out enjoying life, but it can be very hard getting out & about.
Lovleemummy xx
 

Angel62

Registered User
Apr 8, 2013
25
0
Wolverhampton
I have similar experiences to those shared above. My husband who has Alzheimers is so fit and active but has just had to surrender his driving licence and has found this a terrible blow. We are happy together when he is not blaming me for taking him to the clinic where they 'gave him' Alzheimers but he is beginning to really resent the time my mum spends with us and has begun to argue with her. She is 92, a widow, with vascular dementia and refuses to accept any help from anywhere except me. I am an only child and have no one to fall back on. Sometimes I find being around both of them together almost unbearable.

I find I am having to make some really difficult decisions to make the most of our lives together as a couple but still feel guilty about my mum. However it is amazing what Zumba can do for your well being. I thoroughly recommend it!;)
 

greatmeadow

Registered User
Aug 22, 2013
9
0
Worcester
What's PIP??!? Sorry bit blank with this one, thank you so much for telling us that it's really helpful:)

Hi Carole. You have my very best wishes and sympathies in your troubles. I too am going through similar, as my wife was diagnosed 12 months ago with primary progressive aphasia - a rare form of Alz, which attacks her ability to communicate. She cannot write and her speech is very poor. She is 57.
My advice is to take all the help you can. I have been able to set up a strong support network. DO get in touch with your Admiral Nurses locally they are a godsend. DO contact Age UK, they will have a coordinator who will help you every step. DO contact your local association of carers - they run a variety of courses on caring, including finance etc and will signpost you to other support. DO nOT sell your house under any circs they cannot get at it if you live there but could use the money from any sale to cover your husbands care. My wife still contributes 50% of our mortgage from her local govt pension, and this would continue even if she went into care. YOU NEED YOUR hEALTH AND seCURITY!!!
It is tough - I've been off work for 7 weeks trying to sort care etc, but friends, family and care organisations are invaluable.
I'd be happy to talk and share experiences maybe by email if you feel that would be helpful. Let me know - you can reply off list if you wish.

Look after yourself
Warmest regards
Greatmeadow (David)
 

CaroleB

Registered User
Oct 28, 2013
9
0
Went to neurologist today he said that my hubby needs a proper label for his diagnosis, bloods taken, if nothing comes from bloods then will be referred to specialist in Cambridge.
 

CaroleB

Registered User
Oct 28, 2013
9
0
Oh help everyone, I've just had the head teacher on the phone from the school where my hubby works , he's now only teaching small groups and feels he's doing ok. Not so according to head teacher, he has suggested my hubby mite like to take medical suspended leave on full pay until he goes Down the ill health retirement route which has also be suggested. I'm so confused we can't afford to live with out a wage as mortgage is £1300 a month. I just don't know who to contact for some proper advice. :(
 

sah

Registered User
Apr 20, 2009
332
0
Dorset
This is similar to what happened with my husband. Area advisor rang me-I was at another school so not aware of what was happening-and said I had to get husband out of the classroom.( We had put odd things at home down to stress-looking after 94 year old mother) Forgetting all his lessons-close to assaulting a student who annoyed him etc...This was at the school where he'd been HoD and Assistant Head for nearly 30 years. Had trained other staff in tolerance and how to deal with difficult kids....so totally out of character,

The thing is-you either take control of the process and accept that their teaching career is over or risk the possibility of dismissal on grounds of competence.Harsh but true. I did not want OH to end a wonderful career in this way-so went to occupational health which began the process leading to AD diagnosis. This then led to him getting his teacher's pension early on grounds of ill health.

I know that doesn't solve the financial issues-but he can't stay teaching. The head has a duty of care to the students( and staff) which has to come first. It won't happen immediately so you will have time to look into changes.

Have you tried the local AD group? Or CAB? You are right in that you do need advice; it may be there is financial help that I don't know about.I'd also contact Teacher's Pensions-or look on their website-to see what package he may get.

Sorry I can't pass on more optimistic advice-but the sooner things are looked into, the easier it may be.
Sah.x
 

Jumballs

Registered User
Dec 4, 2013
4
0
Hi
My life has been turned upside down with my husband who is only 56 being diagnosed with dementia, what sort you may ask? The answer as yet we do not know but they are thinking a rare kind. After looking at some of your posts at least I now know I'm not along. I feel so tired, what with working full time and coming home to having to think about our future. My lovely husband is changing In front on me and I don't know what to do? Except love him and try and make things normal.
People don't seem to realise the anxiety and pressure we have on a daily basis trying to keep things as normal as possible and still think I'm super woman when all I really want to do is curl up and cry. Sorry to sound so negative this is all new to me and I feel bogged under.
Dear CaroleB
I really feel for you. This is my first time on this web site and feel completely bowled over by your letter.
My wife as well only 56 has been diagnosed with Alzhimers disease in September.I can see my wife changing dailey as well.She has just been trying to wrap up my youngest daughters birthday presents and has no idea so i have just done it for her.
Iam dreading the future.
what happened to the happy retirement?
I hope you have got a good family to rally round and help you.
All the best
Andy.
 

PalSal

Registered User
Dec 4, 2011
971
0
Pratteln Switzerland
Early On-Set
@Carolb
My husband was 49 in 2002 when our journey with Alzheimer's began.
I joined this TP site in 2011. I was so grateful to have a place to ask questions in English (we are expats in Switzerland and my husband is English and I am American). I get real life experience from other carers here on Talking Point. Practical solutions and good tips on dealing with the various stages of the disease (obsessive compulsive behaviors, anger, aggression and acceptance of the intellectual/rational loss of my brilliant capable kind husband. ) Bits of our full story are posted and you can read the details by going to PalSal if you are interested. I have had ups and downs along the way and was frustrated, frightened about about the future and finances and lots of various worries over the years. (I myself was diagnosed with leukemia in 2015-and am now in remission again for the second time)

The best advice I received was bring in help as early as possible. Someone to help weekly with housework and occasionally with gardening, at first. The idea of staff made it easier for the switch to people who then came in to help him as his disease progressed. My OH easily accepted walkers to join him on physical activity, 3 to 4 hours of mountain hiking 3 to 4 times a week keeping him from getting lost, which was a problem fairly early on. I believe this kept him from becoming a "wanderer". He loves to be in nature. Exercise has helped him to maintain his appetite and also has kept him physically fit over this journey. Now, he is never left alone. I have lovely people on contract for walking, and for what I call mansitting....so that I can continue to have my own life which has kept me sane over this long long journey. And he now goes to a daycare 3 times each week....of course, in the early part of our journey he did not wish to go to daycare as he was sooooo much younger than anyone else. But eventually, it became a solution, and now he enjoys his time at his daycare.....
As Brucie said above....each person is unique in their path with the disease.
I am grateful that my husband was able to see all four children graduate from universities (two from medical schools) , and begin their lives, He has been with us to the marriages of two. and we now have 6 grandchildren and one on the way in Feb. Our youngest was 11 at the start of our journey with this disease. But we have learned things along the way. A good life is possible and finding joy in moments in each and every day has been a practice I continually work on. Some days have been better than others, but each day was worth living......so far.
Welcome to Talking Point.....
 

dancer12

Registered User
Jan 9, 2017
498
0
Mississauga
Hi
My life has been turned upside down with my husband who is only 56 being diagnosed with dementia, what sort you may ask? The answer as yet we do not know but they are thinking a rare kind. After looking at some of your posts at least I now know I'm not along. I feel so tired, what with working full time and coming home to having to think about our future. My lovely husband is changing In front on me and I don't know what to do? Except love him and try and make things normal.
People don't seem to realise the anxiety and pressure we have on a daily basis trying to keep things as normal as possible and still think I'm super woman when all I really want to do is curl up and cry. Sorry to sound so negative this is all new to me and I feel bogged under.
Hi CaroleB:

Anyway you look at it it's a nightmare of an illness and it seems to be grabbing hold of younger & younger people. Best advice I can give to you is CHERISH THE GOOD & FORGET ABOUT THE BAD DAYS,

My husband yesterday was singing Christmas carols and got upset when nobody sang with him. He was diagnosed with Frontaltemperal Dementia over 6 years ago and was well until this last year when his short term memory started becoming a big problem. He was always a fit man, doing exercises and eating the proper foods and now this. Nobody is safe when it comes to this illness. It not only affects the person afflicted with it but also the extended family. Keep well & Take Care of Yourself.:):)
 

Perdid0

Registered User
Oct 30, 2020
30
0
I am just starting to apply for PIP. My wife is 62 with Alzheimers diagnosis and we now need to pay a care company for support worker to come in every morning to shower and dress her. (She refuses to let me help with this and sometimes refuses with meds also.) Although we are by no means hard up this is costing more than her occupational pension so I am hoping PIP helps.

PIP is for people under retirement age. I don't have a lot of faith in the system right now. Does anyone?

First I rang and waited an hour and then had a detailed interview but heard nothing for over 1 month. Then rang and waited another hour to be told they had done nothing as I was not the client applying. I made it clear I have LPA and then had to ring back (another hour) to give LPA access code. I was just thinking I would have to ring again when the form arrived yesterday. I will start the form this evening as my wife has gone to bed tired. The local Community Mental Health Team think we will have a good case.

While hanging on the DWP phone queue I had enough time to write a 2 page letter to our MP about how slow and unhelpful the PIP process is and how it's time the Govt kept to its promise to reform social care fees. The letter was sent 20 Sept and he still hasn't replied so it seems our MP even worse than the DWP ...
no need to say which party he's in.

I will get back here to let people know how it goes applying for PIP.
 
Last edited:

sdmhred

Registered User
Jan 26, 2022
1,918
0
Surrey
I know the frustrations of the DWP - my record was 2.5hrs on hold.

I would recommend u ask someone to help you with the form. There are certain buzz words, phrases and ways of explaining things which someone with experience would be able to help you with.

I would suggest asking your local CAB or Age UK.

Well done for contacting the MP. That’s quite an insult to be worse than the DWP 🤣🤣 - tell them that!
 

Perdid0

Registered User
Oct 30, 2020
30
0
Still no reply from my MP and no decision from DWP - I sent the form on 19 October. It was gutting to fund that I might get a Council Tax discount but when I got the form for that after about 2 months, I find that I only qualify for the Council Tax Discount once my wife has been approved for PIP. This would be fair and efficient if the PIP assessment is timely, but at present it just means I must wait for longer for something our CMH nurse feels is an open and shut case.
As my wife is deteriorating fast, does anyone know whether PIP is paid once someone moves into residential care? Obviously that is the opposite of Personal Independence..
 

Harmony2

Registered User
Aug 10, 2023
10
0
My husband was diagnosed with Alzheimer's at age 58 and he is now 61. Emotionally I have had a very difficult journey but in some ways it gets a little easier as time goes by. However, I am dreading any deterioration and know that will happen and plus due to ageing too. My husband seems happy. I wish I could say to people who are in a similar situation to 'make the best of things' but I don't think life is that straightforward. Think individual circumstances make a difference. The best thing to do is to take one day at a time but I am afraid I am not made that way. Our journey could have been made easier by fewer appointments and I wish I had always had hindsight.

Best wishes to all, particularly those that are just at the beginning of a new journey with someone who has been diagnosed with a mental illness.

Reds
Hi, Reds. Thanks for sharing. It's good to hear from others. It is a little blessing you can say your husband currently seems happy. May I ask what you mean or any lessons you feel you could share related to your comments, "
Our journey could have been made easier by fewer appointments"
and "I wish I had always had hindsight"? Only if you wish to share further. No pressure at all. Blessings.
 

Harmony2

Registered User
Aug 10, 2023
10
0
Does anyone have any thoughts about separating finances early on in this process? I don't have a diagnosis yet but it has been developing for years, people close to me now recognise changes, and generally it seems pretty clear that a diagnosis of some form of dementia will come when eventually assessment is begun. Is there anything that is (of course, legal/ethical and) simply wise to do? My motivation is that my spouse probably has many decades of life ahead of him and I don't want all our assets (beyond the house, which I think is protected) to be used up for my eventual care. Please make any suggestions about options that may be possible. Thank you.
 

Perdid0

Registered User
Oct 30, 2020
30
0
I did eventually get a reply from my MP who said he would follow up with DWP, and our bank account now has a payment in "Upcoming transactions" of over £2k labellled with my wife's NI number followed by "Dwp Pip" . I haven't yet had a letter or email explaining details like how much is arrears and how much to expect per month but this is good.
 

Nanny1086

Registered User
Jul 24, 2022
50
0
Hi
My life has been turned upside down with my husband who is only 56 being diagnosed with dementia, what sort you may ask? The answer as yet we do not know but they are thinking a rare kind. After looking at some of your posts at least I now know I'm not along. I feel so tired, what with working full time and coming home to having to think about our future. My lovely husband is changing In front on me and I don't know what to do? Except love him and try and make things normal.
People don't seem to realise the anxiety and pressure we have on a daily basis trying to keep things as normal as possible and still think I'm super woman when all I really want to do is curl up and cry. Sorry to sound so negative this is all new to me and I feel bogged under.
hi , Carol , it must be extremely difficult going to work wandering what’s happening at home day in day out , we are all here for you ,,,when you feel the need to pour your heart out we will listen,,, your not alone , my husband is 81 and this time last year was called into the drs for a check up as he hadn’t been seen for over 30 years ,,, my daughter and myself had noticed something was not right ,,,, and encouraged him to attend , Later in December last year he was diagnosed with advanced Prostrate cancer and Alzimers , He has refused to accept the diagnos of both and refuses to have any treatment,,, ,. it’s difficult every day as i don’t have good health myself at age 78 ,,, but each day i wake up and am grateful to still have him with me , take the best moments and keep them in your heart and when times get tough take yourself to the bathroom and have a nice relaxing bath, sending you gentle hugs ,xx
 

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