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. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,968
    Brixham Devon
    My late Husband was 58/59 when he started to feel 'odd'. He had what was described as a 'breakdown' with psychosis and sectioned. He told whoever listened that he was losing his memory but no one listened. He continued to go downhill and had a brain scan. His Dementia was missed. Two years later he was sectioned again and the scan was looked at again; the Dementia was apparently at a moderate stage when the original scan was taken. I've no idea how the Neurologist missed it:mad:Another scan and he had progressed to low severe stage. Pete continued to take huge dips -he didn't follow the pattern of a slow decline-although, saying that, he did live for 8 1/2 years from the time he became ill. His Consultant, after looking through his notes, was convinced that he was suffering from AD at the time of his 'breakdown'. I would agree with that assessment -easy to see things with the benefit of hindsight. A few months before he died he was diagnosed with Parkinson's and prostate Cancer.

    Pete couldn't feed himself, was doubly incontinent, couldn't communicate. couldn't understand the simplest of instructions on how to dress and at the end he couldn't walk.

    Pete was 68 when he died last December-I was 56. I will miss him for the rest of my life.

    I hope you all have as good a day as possible.

    Lyn T XX
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,133
    Kent
    My husband was diagnosed in 2005 although personality and behavioural changes were there since at least 1999.

    He died in 2014 so lived at least 15 years with Alzheimer`s.
     
  3. kingybell

    kingybell Registered User

    Feb 3, 2015
    115
    My mil was diagnosed aged 56 at Christmas. My husband hopes for her sake (and I suspect his) that she dies quickly. I can see her declining daily but not bad enough to say she's on death's door.

    It is such a selfish disease that has come at a time when we are starting our lives with families and careers. The sooner the better for us because her quality of life is getting worse.
     
  4. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,408
    Male
    Cornwall
    Well I was diagnosed with Alzheimer's in 1999 aged 57 and after several tests and PET brain scans was diagnosed with frontal- temporal- dementia in 2003 I continued working until my retirement age 65 and personally feel ok now apart from being 16 years older now at 72+ and old age brings other medical issues can't stop ageing , I am amazed to hear so many people decline so much , I'm a member of a group run by the Alzheimer's Society there several groups around the Country and you must have a diagnoses of dementia , of eight members I think I'm the youngest ages range 72 - 79 six of the members still drive themselves to the venue as most of you know by now I still drive all the group members have other medical problems but to be expected with age , personally I would have thought any one diagnosed with dementia in their fifties unless they get another major illness could live with dementia for another 25 to 30 years
     
  5. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    As I said in my previous post, Tony, you write with clarity and eloquence, some 16 years after diagnosis. And, again, as many have said, including myself, AD isn't an illness where one size fits all. So many people have the added problems of double incontinence, the inability to think, or talk coherently, no idea how to carry out the simplest of tasks and no recognition of their nearest and dearest.

    There is absolutely no way I could have permitted John to drive during the last few years of his illness. He thought he was perfectly capable, but when he failed to look at junctions, or stop, I knew that not only was he unsafe, but so were any other motorists, or pedestrians, that happened to be out and about when he was behind the wheel.

    It's heartening to read of all the things you can still do, Tony. In order that carers can read of the positive things, how would you best describe the way your illness, since diagnosis, has impacted on yourself, and others?
     
  6. kingybell

    kingybell Registered User

    Feb 3, 2015
    115
    Tony I think you are amazing and keeping yourself fit is the key to longevity. Unfortunately in my mil case she has vd too. Her diet is poor and she has never been one to go out socialising.

    She sits at home all day (but always has) watching or staring at the TV. If I suggest doing anything or going anywhere she always says she doesn't want to leave the house.
    She's starting to lose words from her vocabulary and is isolating herself more and more which isn't helping.

    I really admire your strength Tony, keep it up!
     
  7. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,408
    Male
    Cornwall
    Hi Scarlett123 & Kingybell thank you both for your comments , and I do understand the problem some people have at different stage of their dementias , I meet others with the illness and email others on members on talking point with the dementia illness regularly and we don’t see or come in contact with the more advanced person other than on some TV programme or news . having said that my Dad did know any of our close family members .
    So yes it good for both Careers and dementia suffers to tell every aspect of how this dementia illness effects people , of course I only give a personal view
    yes I know I write on here a lot ITS not so easy believe me takes me ages then when its gone and I read it :confused:i notice All the mistakes
     
  8. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,408
    Male
    Cornwall
    Hi Scarlett123 I will P.M you with my answer
     
  9. jikkie

    jikkie Registered User

    Aug 23, 2015
    64
    Thank you all for the interesting responses. So glad I found this forum.
     
  10. Marylil52

    Marylil52 Registered User

    Mar 26, 2015
    39
    My husband first collapsed about 20 years ago. It was thought to be epilepsy. About 10 years ago, not long after we married and three years after we first met, he was told that he 'might' have dementia following an MRI which appeared to show some loss of brain mass. There followed dreadful years of conflicting diagnoses ranging from 'anxiety' to Alzheimer's. Finally after extensive testing by heroic and kind staff at the National Hospital for Neurology in London , he was diagnosed a year ago with Lewy Body Dementia. No hallucinations but increasing confusion and parkinsonism. The last six months have been terrible. He is fully aware of what's happening and in despair. Just also started to be very angry and lashed out at lovely carer and me last week. He wants to die and like poor Casbow's husband also yearns for the river. I don't blame him. Often I want him to die: I can't bear to see his terror and grief. I cuddle him and love him and try to cheer him. But God it is difficult. I'm angry, exhausted and probably quite loopy. I'm a prisoner in the house most of the time. I cook and chop his food, I pull his pants up and down before and after his constant visits to the loo, and sometimes clean his bum. I try to talk to him and sometimes he responds but increasingly asks if I'm talking to him. He won't go out - too frightened - can't be left alone and loathes having anyone else sitting with him. Friends and family (NB not his children who are understandably distressed but live away from home with jobs and partners and seem to see a tenth of the pain and dependency) urge that I think seriously about a care home. But to leave him in one, conscious as he is, would be utter cruelty and I can't do it. He is still my dear love.
     
  11. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    3,072
    Devon
    Oh Marylil, that all sounds so difficult for both of you. A dreadful situation and I can't offer you any advice, I just hope things ease off soon. Sending you a big cyberhug.
    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
     
  12. Marylil52

    Marylil52 Registered User

    Mar 26, 2015
    39
    Thank you so much, Esmeralda. The awful thing is that I get so angry with him. It's not his fault, it's not his fault, it's not his fault. It's this damned illness. He says that he has ruined my life and I tell him this is not true. I tell him how much I love him and how much happiness he has brought me - and he has, and if we had to do this again I would marry him again in a heartbeat, illness and all - and then I shout at him for demanding that I loosen his trousers, tighten his trousers, change his trousers, take his trousers up or down. I'm ashamed of myself and know that when he is gone these things will haunt me.
     
  13. optocarol

    optocarol Registered User

    Nov 23, 2011
    315
    Auckland, New Zealand
    Forgive yourself, Marylil!! No-one on here is a saint and we all get what you're saying. I console myself with the thought that he'll have forgotten it in half an hour anyway.

    Hope that helps. :)
     
  14. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    Oh my dear! Excuse me butting in but you've just described my husband too! Sending a big hug and sharing a tear.....
     
  15. Lets_Stop_Time

    Lets_Stop_Time Registered User

    Aug 23, 2015
    45
    Heart breaks reading all these comments.

    My mother in law is 62 and has mixed vascular dementia and alzheimers.
    She has in my personal opinion showed signs for about 6 years. The strange behaviours really started 3 years ago (stopping cooking, stopping cleaning, repeating things, forgetting things etc).
    She in the last year seems to be on a more rapid decline, needs help with washing and everything done for her, prompted to get dressed but even thats stopping now. Now have carers visting a few times a day.

    From what i read I guess statistically between 2-7 years 'left'. Can't compute that in my mind I really can't.
     
  16. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    We're all different, and I can only speak about my own situation, but there can be few carers in the world, in the history of AD, who haven't felt irritated, angry and frustrated at some point in time. I know I did, but now John has gone, I don't find my actions haunting me - now.

    I did at first, I berated myself for "putting him in a Care Home", for not being patient, quiet and kind 24/7 for 12 years, every single second, for groaning when I felt exhausted etc, for not answering the same question, over and over again with never a sigh.

    But .......,. not now, and not for some time. I couldn't cope any longer, and I knew my own supply of patience had long ran out, and the end of my tether had been reached years ago. John was only in a CH for a few months, and, when I think rationally, it's possible he might have lived longer had I continued to care for him at home. But, at 76, he was the youngest there and had no quality of life at all, and I wouldn't have wanted him to live any longer. He wasn't talking, eating or drinking, didn't know me, barely opened his eyes except to look, blankly, past me, and had three UTIs in rapid succession.

    I weep for him, but I lost "him" many years ago. We're all only human, and doing our best. John died 2 days before Christmas and Christmas Day would have been his birthday. I can't lock myself away for ever, and pretend Christmas won't happen again, and so I'll join in the festivities, nail a smile on my face, and give thanks that John hasn't had to endure any more pain and confusion.

    Sweetie, you're going through your own private hell, and nobody can say when this will end. But please don't beat yourself up because you're not softly spoken for every second - who could be? Sending you a massive cyber bouquet, and a huge hug. :)
     
  17. Marylil52

    Marylil52 Registered User

    Mar 26, 2015
    39
    It's enormously comforting to know that I'm not alone. Also to see the generosity and kindness of your replies. Thank you! Your experience, Scarlett, sounds so terribly difficult, but also how lucky your husband was to have that love and care. It's the gradual disappearance of the loved one that is so awful. May i ask: after John's death did you in any way find again the man you loved?

    Self-pity is corrosive and also very boring. But I hope here in this space, it's OK to say how desperate I often feel. Things at home are nothing like as bad as they are for many people. D is lovable and beloved and friends stay in touch; some even visit. But it's terribly difficult to leave the house. We pay carers to come in for 2 hours twice a week, and his daughters have come up on a couple of occasions to take care of him overnight (but not since he became so ill). He hates being 'looked after' and often is angry when I return. So I'm effectively at home for a good deal of the time, since D is increasingly afraid of going out. Luckily I'm lazy and am generally fairly happy reading or playing games on my tablet. But the NOT BEING ABLE to go out even to post a letter, is very hard.

    What do others do? Do you find that as your horizons narrow you stop making the effort to read the news, or anything much other than thrillers (thank heaven for Lee Child and Jack Reacher, just discovered. All that leg-breaking is a wonderful release valve for pent up rage and frustration ...)? Do you join things online, maybe to study? Should I be making more of an effort, now, to prepare for a time when D and I are apart, either through living in different places or through death? Should I be doing much more with him, pushing him to paint or listen to music, though he now shows almost no interest? I guess the question is bigger than that. It's how, quite apart from the practicalities of daily life, you live with someone who isn't really there, and how you cope when he isn't there at all. Sorry, this is rambling stuff. Better stop and get to bed....
     
  18. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello marylil52
    I have been going through much the same as you my hubby has had AD for 9yrs, it is such a cruel disease, l dealt with it to the best of my ability, not easy, are you unable to take your hybby out, being indoors all the time, makes you and him depressed. My hubby is now in a CH, it has been a relief for me, will your hubby go to day care? that would give you more time to get out and about, otherwise we just get in a rut. Thinking of you Mary, sending you a big (((HUG)))
     
  19. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    3,072
    Devon
    #39 esmeralda, Sep 17, 2015
    Last edited: Sep 17, 2015
    I sometimes think ordinary people in the street who have not had this kind of experience in their family would be amazed at the sort of lives we lead, and loss of freedom to do just everyday things is very hard to bear Marylil. Although I'm not quite as restricted as you, nevertheless going out for more than an hour or so is no longer possible without engaging carers. I am much more fortunate than you in this because my husband is very easy going. Physically it is very difficult to get him out of the house to go anywhere and I do so miss us being able to do things together like that.

    Self pity is, as you say, corrosive so I try hard to be positive and philosophical and use the time as productively as possible. There is a time however to recognise how desparate and sad we feel. We are after all grieving for all the things we have lost, are losing and will lose and it's not honouring our situation to deny this. Sharing how you feel with people who understand is one of the best things you can do.

    Chuggalug, who you might have come across on other threads talks about how she has set up a studio to work with her music for when she can't get out, and she talks about the joy she finds in even small things in life despite the difficulties she faces and this has helped me a lot. We're not all so technically able or so inclined but this time of enforced isolation can be an opportunity to really explore things we are or may have been passionate about in the past.

    Have you visited the Tea Room on TP? It's full of interesting threads about what people are doing.

    Wishing you all a peaceful day with good things in it.
    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
     
  20. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    Again, these are just my own personal experiences. But a few weeks after John's funeral, I had a foot operation that kept me at home for another 6 weeks or so, apart from the few kind friends who collected me, crutches and all, and took me out for a coffee.

    So I used this time to go through the dozens of photo albums I had, at least one for each year since 1966 when I met John, and had a good sort out. I managed to condense the first 30-ish years to half a dozen new albums, and I found this terribly cathartic. I laughed, I cried, and looking at John, pre AD, I was able, to some extent, to put the AD years into a compartment in my mind, never to be forgotten, but not to be remembered as "bad" years.

    I bawled my eyes out when I realised I'd never have a birthday card from John again, but each year, I've always put the family cards in a carrier bag, labelled the bag, and put it away. Again, it was cathartic to sort these out, and I now have nice neat coloured folders with birthday cards from John, Christmas cards, Anniversary, Valentines, miscellaneous, and it was wonderful to look through these and read his lovely messages.

    In April, I joined the Citizens Advice Bureau, as a volunteer "form filler", a couple of times a week, and I'm now doing this in the Parish Office at our local church as well. Doing this work has helped me enormously - but of course, it's no substitute for the love and companionship that John and I once had. I've joined a Community Choir, I've done my best to tend the garden, I take the dog out, I never turn down the chance of lunch or coffee with a friend.

    We all find our own level of coping, and it's damned hard not to feel sometimes that you're drowning in self pity. Unless you've cared for someone with AD, nobody understands that you can't pop out to post a letter. I couldn't even have a wee without having to take John to the loo with me!

    There's no easy way of coping, unless you're blessed with a massive support network of family and friends, and it's nigh impossible not to feel the teeniest bit of resentment. TP is the one place where you can get everything off your chest, because everyone understands what you're going through. Keep posting sweetie. xxx
     

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