Younger people with dementia

Discussion in 'I have a partner with dementia' started by CaroleB, Nov 27, 2013.

  1. CaroleB

    CaroleB Registered User

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

    sah Registered User

    Apr 20, 2009
    332
    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
     
  3. Lovleemummy

    Lovleemummy Registered User

    Jun 13, 2013
    77
    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
     
  4. Angel62

    Angel62 Registered User

    Apr 8, 2013
    20
    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!;)
     
  5. greatmeadow

    greatmeadow Registered User

    Aug 22, 2013
    9
    Worcester
    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)
     
  6. CaroleB

    CaroleB Registered User

    Oct 28, 2013
    9
    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.
     
  7. Lovleemummy

    Lovleemummy Registered User

    Jun 13, 2013
    77
    Stoke-on-Trent
    CaroleB-hope everything goes as well as can be expected. My heart goes out to you. Lovleemummyx
     
  8. CaroleB

    CaroleB Registered User

    Oct 28, 2013
    9
    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. :(
     
  9. sah

    sah Registered User

    Apr 20, 2009
    332
    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
     
  10. Jumballs

    Jumballs Registered User

    Dec 4, 2013
    4
    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.
     
  11. CaroleB

    CaroleB Registered User

    Oct 28, 2013
    9
    Merry Christmas everyone, make it happy & have memories to laugh about & treasure :)
     
  12. PalSal

    PalSal Registered User

    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.....
     
  13. dancer12

    dancer12 Registered User

    Jan 9, 2017
    493
    Mississauga
    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.:):)
     

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