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Discussion in 'Younger people with dementia and their carers' started by Nameless, Mar 17, 2017.

  1. Nameless

    Nameless Registered User

    Jun 10, 2016
    Are other people here suffering with depression? I'm having a hard time accepting the diagnosis of early onset AD, which my husband received a little over a year ago. I'm a nurse and "know" what Alzheimers is and am so overwhelmed by it. Working with patients with AD is a job that I enjoy and do well, but living with it.... I can't see us / me coping with it, i just don't see me handling the future , I just don't want to. Since three months I'm taking an antidepressant. It gives me more energy and i function fine, but mentally it doesn't seem to loosen my blockade. I want out.
  2. Philbo

    Philbo Registered User

    Feb 28, 2017

    Firstly, welcome to the forum and I hope you will get some comfort from reading about how other folk deal (or not) with living with or alongside this dreadful condition.

    It may be the case that as you say you work with people affected by AD, you are in some sense, too familiar with all the issues that go with it? Myself, although I was aware of the types of issues, I had not had first hand experience. So, I have had to come to terms with it as it unfolds, so to speak.

    Even before my wife was diagnosed (Jan 2014), I had pretty much guessed, as we had some very worrying episodes for at least a year or 18 months before I could get her to see our GP (including some amount of not wanting to confront the issue myself?).

    As a 66 year old bloke who has been well looked after during 46 years of marriage, I have surprised myself in how I have coped with amongst other things:-
    Learning how to cook, operate the washing machine, oven etc (I could at least iron, Hoover and clean!), toileting etc.

    There have been many times when I have felt like running away - probably fairly common amongst contributors to this lovely forum. I have found some comfort in talking to various support organisations in our area.

    I know that in our district hospital, there are nurses etc who lead on dementia, so maybe you could have a chat whilst at work, if there are any where you are based?

    I am sure others will offer some much needed device too.

    Kind regards
  3. irismary

    irismary Registered User

    Feb 7, 2015
    West Midlands
    Hi Nameless
    I agree with Phil being a nurse you know better than many of us what's coming and so no wonder its getting you down. Oddly I have often felt I'd like to know what's going to happen but perhaps best not.
    My personal experience is that I am very up and down - coping well for a while, then wanting to get in the car and just drive away. My guess is that its how many people feel. Often its daft little things that push my buttons, and the bigger things such as when my husband had a stroke I cope with.
    Do you have some support so you can get a break - a night out with friends or a spa day. It doesn't solve the problem but it can help.
    Take care
  4. Backy1

    Backy1 Registered User

    Aug 27, 2010
    My wife us 52 and was diagnosed with Alzheimer's 7 years ago. I'm also 52 and had to give up work, friends, hobbies etc to now look after her full time at home with some help, but every day is completely overwhelming in every way as her needs encompass everything. She is now in late stage and has developed vascular dementia as well so you will know how challenging things are. Each moment is emotionally incredibly difficult and I often feel that I just cannot carry on, with feelings that everything we had together and everything we planned for our future is totally lost. But I've also learned to block out such thoughts and try to make the most of just the day we are in even if it is a daily roller-coaster ride. Our future is now about today and it took a while to make that adjustment. I try to think that everything I have to do for her is an expression of how much I love her and not yet another caring task, and I know that deep inside her she knows who I am and holding on to that keeps me going. Try to find positives even though it is hard, hold on to them and use every bit of support you can get. You MUST find some space too for your own emotions and do not hold them in. I cry and I rant in private but it gets me back to a better place mentally. Try to keep off anti-depressants as a last resort and work on your own health and wellbeing in other ways. Dementia affects everyone involved with the sufferer, but you still have your own individual life ahead of you and I'm sure that your husband would want you to live it for the sake of both of you - hold on to that in a positive way. Some days I get just one smile from my wife and I hold on to it as the best moment together until the next. Don't develop the badges of being dementia sufferer and carer - keep holding on to being wife and husband through thick and thin ahead. I hope this helps and my thoughts are with you.
  5. Nameless

    Nameless Registered User

    Jun 10, 2016
    Thank you all for sharing. I'm usually an optimistic person and can cope with problems. But with the AD of my husband my emotions are like a rollercoaster, I get a lot of bad days. I have good friends, hobbies and work and am very busy. My husband and I do a lot of things together that we enjoy, it's of course a lot different than it used to be. When I'm with other people and they ask how it's going I usually just say "fine" to skip the topic because I don't want to harass other people with my thoughts. When the AD progresses and everything gets to be more restrictive I don't think I can keep going. It just seems so futile and hopeless. Sorry that I'm ranting here.
  6. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    It must be hard working with AD and having to deal with it at home aswell! You need a break from it if you can. I'd love a one myself but have no help either. I have had a bad week with my OH this week. His memory has got a lot worse and he has been aggressive and agitated going to memory clinic on Monday hope they can offer some help with medication. I too felt that I can't carry on as I knew it was making me ill. I'm not on medication yet! Hope I can manage.Not sure for how long though.
  7. Lawson58

    Lawson58 Registered User

    Aug 1, 2014
    Victoria, Australia
    Hi Nameless,

    I can't help but wonder if the relationship between you and your husband was in trouble before he got his diagnosis. I know you say in a later post that you do things together that you enjoy but you say you want out and that is a very telling comment.

    So often it's the things that go on prior to the diagnosis that are the most destructive to a marriage and sometimes there is no way back to how things were before. The person he was is long gone and that forces a huge adjustment by you the carer.

    Antidepressants will help you feel better but they can't solve the underlying problem because it is not going anywhere. I am a lot older than you and can't begin to imagine how horrible it must be to try and find the courage for what lies ahead of you.

    You are obviously a very caring person but you must care about yourself too. It is not selfish to have your needs met and how you achieve this will take time and as your husband's needs change you will need to adapt and adjust too.

    Tin recently started a thread about being sad or depressed and it could be good for you to have a read. The other thing I would suggest is that along with your antidepressants you talk to your GP about some counselling. You don't want to spend the rest of your life on antidepressants and unless you get some help to deal with your fears about the future that's where you could end up.

    Let us know how you get on.
  8. Nameless

    Nameless Registered User

    Jun 10, 2016
    Thanks, I will check out that thread. Our relationship was very good until about 4 years ago. Retrospectively the changes were of course caused by AD. They were masked because our older son spent the better part of two years in the children's hospital with about 25 operations and terrible pain issues. My husband had a hard time coping (I had to explain everything again and again), it was a stressful time and stress is bad for AD. I expressed myself badly with "I want out", it's just the feeling I get when I plan for the future and search for solutions and just don't find any.

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  9. Lawson58

    Lawson58 Registered User

    Aug 1, 2014
    Victoria, Australia
    #9 Lawson58, Mar 18, 2017
    Last edited: Mar 18, 2017
    You certainly have been through a very rough time and the stress for all your family has been dreadful and I am sure contributed in no small way to your husband's decline.

    OH was diagnosed almost three years ago and in the years before, our relationship deteriorated so badly that we discussed separation. It was the constant paranoia that I found so hard to take and of course the denial about his having a problem and the battle to get him agree to undergo assessment. I can actually pinpoint some of his issues to at least ten years ago.

    The trouble with this disease is that time doesn't really mean much as no one can tell you how things will progress, no one can tell you how long it will be before they need a more intense type of care. And at your age I think we can all understand how daunting the future must look.

    I think you have been wonderful and I sincerely hope that your son is doing much better.
  10. Nameless

    Nameless Registered User

    Jun 10, 2016
    The time before diagnosis was definitely tough, all those small and weird changes that occur and you can't put a finger on exactly. Our son is doing okay, his hip is fused. He wants to get hip replacement surgery in his summer break, but I want him to finish school first (3 more years) and then get it done. I just couldn't take it if he had complications after the operation. My husband and I spent years before that looking after his parents (mother vascular dementia) and his father prostata cancer. And my mom has MS. Luckily my cat is doing fine.

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  11. Amber_31

    Amber_31 Registered User

    Jun 29, 2016
    I'm really depressed and there isn't really a cure. I don't want to take antidepressants as I am still going to find myself within the same set of circumstances that just bring my spirit so low. But I 'feel' depressed, but I know I'm not actually depressed, as I have a baby who causes me to automatically have a smile on my face and work on autopilot, even though inside I feel entirely sluggish and sad. I live with my mum who has dementia and I can't leave her alone for more than half an hour.

    The only thought that gets me though all of this is that in a year or two when my baby is older and at pre school my husband says we can get a carer to look after my mum and I can go back to work in my much loved profession. But we'll see how that works in practice. The other things that cheer me up are that lunch with a friend feels like a real treat, going for a run feels indulgent and a pristine kitchen gives me a weird pleasure.

    But I don't think that will end the daily heartbreak of seeing my mum suffering and all the practical difficulties will end if I go off to work.
  12. Susisuster

    Susisuster Registered User

    Mar 6, 2017

    When my husband got his diagnosis at the age of 54 he is now 57 , I felt I was coping, I was supporting him as he was very depressed, and also supporting the rest of the family and working full time, getting a diagnosis when you are young is totally different as are still working still got a mortgage and perhaps young children so you have all the stress of financial worries as well,.
    After six months I suddenly broke there is no other way to describe it I went right down and was unable to work, luckily I was able to take my work pension and retire as I could not go back to work. What you are dealing with is the grief of the life you were planning to have and now you won't and now you don't know what your future is going to hold the retirement you thought you were going to have is no more. I have mended myself to some degree although I have days when I think just one more thing and I won't be able to go on, my mother has cancer and probably won't live past this year and I am caring for her and my dad as well as my husband.
    What we have done is have as many holidays as we have been able to since his diagnosis which has now stopped as he can't cope with flying etc any more, but I have lovely memories of time spent with him and he enjoys looking at the pics although he has forgotten lots of it. We also access what support we can through the alzheimers society and young persons groups and carers groups which really helps me, my husband is passionate about helping other people with the diagnosis and is doing work to help make places more dementia friendly. Take one day at a time to look into the future doesn't help. Get out when you can it helps .
  13. Nameless

    Nameless Registered User

    Jun 10, 2016
    Most here have very similar problems I see. It is tough letting go of all future plans and expectations. I guess I think too much about it and that really gets me down. I'm 45 and my husband just turned 52. The kids are 16 + 17. He accepted the diagnosis so easily, he was relieved. I'm just having problems with it. Maybe tomorrow will be a better day.
    Thanks a lot to all of you.
  14. Hellyg

    Hellyg Registered User

    Nov 18, 2014
    East midlands
    Hi nameless,

    I am 41, my husband also has early onset, FTD, rather than Alzheimer's, but the same devastation. He is 57, diagnosed at 55. Outwardly I cope, inwardly not so much.

    If you want to chat please feel free to private message me.

    H x
  15. Hellyg

    Hellyg Registered User

    Nov 18, 2014
    East midlands
  16. Ihtl

    Ihtl Registered User

    Jan 19, 2016
    I'm suffering from depression too. My dad was diagnosed with early onset FTD in the summer of 2014 and the diagnosis was a long time coming; he had been having appointments at the memory clinic as early as 2011 and probably had dementia for at least 3 years before that.ing

    The start of 2014 saw a very sharp decline, he had to stop work and staying home alone for even short periods of time was a bad idea. Work patterns had to change for all of us.

    Like some of you have mentioned, my mum was dreading her retirement.

    After my mum's death a couple of years ago my dad really deteriorated quickly and needed constant supervision. Being in my twenties it's been hard to give up on things I thought I might have been otherwise doing, career, relationships, family etc. Being selfish, I feel as though I've lost a lot of time, time that I can never get back.

    Between my mum's death and my dad's dementia, depression has hit me very hard. I naïvely thought I'd feel much better once my dad moved into full time care earlier in the year. Though deep down I know this isn't how even situational depression works. I guess I'm due another trip to the doctors.
  17. Lawson58

    Lawson58 Registered User

    Aug 1, 2014
    Victoria, Australia
    Never think of yourself as being selfish. You are so young and yet you have given up so much and had so much loss already in your life.

    It seems that once you become a carer, you no longer have the right to have your own needs met and that is so wrong. But we seem to impose it on ourselves because we are loving caring people who put our PWD first. But you know the old saying that you can't set yourself alight to keep another person warm.

    Yes, they do need all the care and attention we can give them but at what cost? OH is the one who is ill, (AD but now maybe mixed dementia, cardiac issues) but it has wrecked my life as well.

    It's not just the responsibility we accept when we care for another but the loss of the things we value in our own lives and the fact is that the choices we have are pretty diabolical. For those who choose to walk away, the ramifications for their mental well being are pretty huge. For myself, it was the resentment and anger that I felt about my situation that fuelled my depression and for those who suffer physical exhaustion as a result of their caring this must make it even more difficult.

    It's time for you to get some help for yourself and reclaim your life. I hope you can get things sorted out for your future because you may not think so now but you really do have a future.
  18. Ihtl

    Ihtl Registered User

    Jan 19, 2016
    Thank you Lawson58.

    I am trying to be positive about the things I can start doing now, going back to work, aiming to attend university again in a year or two. It's been hard to get back into a rhythm since my dad went into full time care.

    Being at home all day with much less responsibilities has been a recipe for stagnation as far as depression is concerned. I'm very much trying to get out of the habit of staying in bed all morning and not starting to to anything productive until later in the day.

    I have felt envious and resentment (as much as I feel silly about it) towards some friends/acquaintances who have got married, excelled in their careers, have had kids over the last years. Someone mentioned that sometimes you end up being a carer without even noticing, looking back I can definitely see that that was how things were with my dad and even my mum (though she hid how ill she really was).

    I know I have things to look forward to, I just need to work on getting out of this funk and learn to start enjoying life again.
  19. Lawson58

    Lawson58 Registered User

    Aug 1, 2014
    Victoria, Australia
    And you also need to remember that it takes time to recover from carer burnout, time to recharge the batteries and time to sort out your headspace.

    You still have your dad in your life and you obviously are still carrying the responsibility for him with you so don't expect to suddenly feel well again. It doesn't work that way.

    All the things that you have seen your friends do are not beyond you yet and I believe it is a healthy sign that you are beginning to make plans for the future.

    I also believe that the experiences of caring, the good, the bad and the absolutely dreadful, will one day bring you strength and courage and will influence you in a positive way as you get on with your life.

    Let us know how you get on as we would love to hear.
  20. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    Snap! Husband with eoAD. To cut a loooooong story short I recently discovered that my employer offers some free counselling via an agency that matches you with a local counsellor. I phoned up for an interview and qualified for some free face-to-face sessions. It helped to be able to talk honestly to somebody about how i felt about things. Maybe the NHS might offer something similar for you? X

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