1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Rubylou

    Rubylou Registered User

    Jan 20, 2015
    18
    Female
    Cambridgeshire
    Hi nonstop


    Hi nonstop! yes lots of what other have already said is so right.
    My mother n law battled against Alzheimer's for around 7/8 years, it was pneumonia that she finally died from, due to the alzheimers affects on her life/body. My husbands cousin died last year after only fighting for 3 years, due to alz affecting her ability to swallow she choked.
    My husband was diagnosed 18 moths ago with early onset Alzheimer's at the age of just 59. I already can't believe that this roller coaster has been going for about 2 years, but I reckon we are about a third of the way along the ride. No there is no definite timings with how long is left but, when people keep saying, oh take each day as it comes and make the most of your time etc etc I know it's meant well but flipping heck it's one of the hardest things I have had to do!
    That's the biggest issue I have with this bully of a disease, if it's not enough that it's going to take our loved ones in this awful way, it keeps you guessing the whole time as to when it may just snap them up!

    We have huge support from the mental health support nurses an d the consultant has been brilliant. I would love my husband to have an interest in going to a support group for younger people affected but he is a very private person and very reluctant to mix
    Yes get all important things in place and settled so you can get on and do special things with your wife, memories to record, places to go and loads of photos to take!

    Rubylou
     
  2. Irishgirl57

    Irishgirl57 Registered User

    Jan 21, 2014
    189
    Florida, USA
    First, your wife is very lucky to have you. I also have a very loving caring adoring husband. I couldn't do this journey without him. Is he perfect, ha ha absolutely not. But who is. It's been four years since my diagnosis, at first it was devastating and we didn't know what to do. No I have good days now. Learn to be flexible. Finding the new normal that's the "that's the quote.

    To me, acceptance is the key. If I don't accept my condition, I find myself looking at all the things that I can't do any longer, work, Drive, read a book, act normal in social situations. But if I work on acceptance, I deal with the positive things in my life.

    Many blessings to you …
     
  3. Nuttywal

    Nuttywal Registered User

    Jan 31, 2016
    1
    We have a lot in common

    My husband is 58 and we finally have a diagnosis. He's probably had Alzheimer's for years but our local memory clinic won't take anyone under 65 so we had to go the long route.
     
  4. tss502

    tss502 Registered User

    Oct 20, 2014
    109
    Hi,

    My husband was diagnosed with early onset alzheimers about 15 months ago at the age of 55. He has been on donepezil since and we haven't seen much deterioration over that period. We've had experience of clinical trials and I would say this is definitely worth doing - you get to contribute to some meaningful research and the opportunity to try new drugs which may or may not help the condition. My husband is on a trial drug which is intended to increase the benefits of the donepezil and boost his cognitive function. I've no idea how he would be if he wasn't taking it so it's difficult to say definitively whether it is helping or not, but the important thing is that it gives you hope and something positive you can work towards. We signed up through the Join Dementia Research website. It's also nice for my husband because we get to go down to London once a month, he gets free coffee and sandwiches and its a change of scene. He likes visiting the clinic and chatting to the Doctors and has got on with them better than the ones in our local memory clinic. We also try and do something nice whilst we are there like having lunch or popping into a museum so he always looks forward to it.

    I haven't been given any timescales for life expectancy but have read various contradictory statements about this and I think it's probably not worth worrying too much about, as others have said 'live in the moment and make the most of now'.
     
  5. aprilbday

    aprilbday Registered User

    Jan 27, 2016
    329
    Washington, DC USA
    Nuttywal

    That is so wrong to limit the help like that! Wow! 65! There are so many who suffer before that. My goodness. Glad he has a diagnosis finally.
     

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