1. cath6370

    cath6370 Registered User

    Jan 17, 2016
    1
    #1 cath6370, Jan 17, 2016
    Last edited: Jan 17, 2016
    Hi, I have recently after many frustrating years of trying to get help (it was always put down to depression and anxiety before) finally been diagnosed with early onset dementia.

    My beautiful husband, has over the years covered up my behaviours and everything else I have done, he does truly love me and has been dedicated to and protected me always.

    In hindsight, his protection may have contributed to my delay in diagnosis, we did not tell anyone what was going on, not family, friends, anyone, not even our children until we had to, and his not wanting to come to appointments with me and I think denial that there was something quite wrong.

    I love him dearly and our two beautiful children and we are all devastated that this has happened to us, I guess at the moment it is a why me, why us time, in our house.
     
  2. Lawson58

    Lawson58 Registered User

    I felt incredibly sad reading your post, so sad that you have this terrible disease at an early age and that it took a long time to get some answers.

    But I felt very sad for your husband too as I think you are being a little unfair to him. You say quite readily that he has been wonderful through all the time that you were seeking help so I don't understand why you think he is to blame for the delays in your getting a diagnosis. Most certainly he had could not have possibly known nor have any idea of what was really wrong with you and his only intention was to support you to the best of his ability.

    You have a rough road ahead of you and he sounds like he is prepared to travel that road with you, that he is prepared to cope with whatever this illness throws at you both. So I think that your idea of having a discussion about his role, if any, in the delays in your treatment would be detrimental to your relationship. You are going to need him in the future so perhaps you need to treat him with some of the kindness and care he has shown you. This illness is going to have a huge impact on him and I think you are fortunate to have such a loving husband.
     
  3. Gwyneth

    Gwyneth Registered User

    Nov 25, 2015
    48
    Good morning
    I do so agree with the above reply.
    I am indeed sorry that you have this diagnosis but it sounds like you have a wonderful family who love and care for you. I think if we are honest, most of us unless hit by a rapid dementia onset and decline, would excuse memory and cognitive slip ups, pass it off, cover up, go into denial, not want to broadcast it to others etc. Looking back I certainly did this and my husband and I thought it was anno domini for a couple of years until we felt maybe there was more to it. Most of us do what we feel is best and as this seems to be a condition that has smooth as well as rough patches, ups and downs, good times and not so good, we can only take things step by step. Keep loving and caring for each other.
    Best wishes Gwyneth
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,664
    Kent
    Hello cath6370

    Welcome to Talking Point.

    I don`t think you are blaming your husband for helping to delay your diagnosis, I think you might just be going through a period of `what if`s.

    Now you have the diagnosis and have found Talking Point. I hope you will find coming to Talking Point is one of the best things you could have done under the circumstances.

    It really is a devastating diagnosis and everyone here with know how the family will be affected and certainly what a body blow it will be for you.

    It`s early days for you so hopefully there is medication which will slow down the progression.
     
  5. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,358
    south-east London
    I completely understand your relief at now having a diagnosis after years of frustration. When my husband was diagnosed with early onset, as strange as it sounds, it was as if a huge weight had been lifted off both of us.

    I think it is fair to say that at any point of diagnosis, the person with dementia has had symptoms which have not been acted on for several years.

    It is perhaps picked up quicker in older people as GPs are more geared towards thinking of dementia as a possible scenario in the elderly as opposed to someone of younger years presenting to them with the same symptoms (though I'd like to think things have started to shift in recent years and that there is wider understanding now that this is not an age related disease!)

    It is also fair to say that we can all be wise with hindsight.

    For instance, my husband began to change from being a sharp-minded, quick-witted individual in his 50s. It was not an overnight change and something I now only recognise as an early warning sign because I can now look back with a lot more knowledge than I had four years ago.

    In the early years we used to joke about it and call it 'grumpy old man syndrome' as he grew increasingly more impatient of other people and their faults instead of the laid-back 'accept everyone as they are' attitude he'd always had.

    In his mid 50s he was made redundant. He had been made redundant several times in his life and he always walked straight back into work so we were not worried. This time though it was different.

    During three years of being unable to find work and knowing that my husband was not depressed, I tried umpteen ways to find out what the cause of his forgetfulness was.

    When someone is not working it is easy for them to lose track of what day of the week it is so that particular symptom didn't flag things up with me.

    When he kept asking me to repeat things I sent him off for a hearing test (with hindsight I now know this was a strategy he had developed in order to play for extra time while he formed a response).

    I upped his intake of blueberries having read the were good for the brain and I got him tested for vitamin D deficiency believing that his years of staying out of the sun (due to another medical condition) had made his levels drop too low and his cognition was affected as a result.

    These are just some of the things I did in order to find a reason or make excuses for what was going on.

    In short, dementia was not on our radar, not until late 2011 when there was a spate of adverts about it on tv.

    In January 2012 we asked the GP to refer him for assessment. The GP did so, but said things were more likely to be due to depression, anxiety and loss of confidence through being out of work, even though we were quite clear to him that this was not the case. In the May of that year my husband was started on the medication for dementia.

    We were told we had caught it very early, but looking back there are so many times, not gone into here, where I overlooked signs, which had I known then what I know now, would have led to a much earlier diagnosis.

    So please do not blame your husband for maybe delaying diagnosis in some way by looking for other reasons to explain what was hapening, it really isn't as straightforward as it seems, especially where early onset dementia is concerned :)

    You are clearly a close, loving and supportive couple and that is something fantastic. Now that the diagnosis is in place, once you are through the initial shock, you will find so much pressure has been removed because neither of you need to cover-up things or frantically look for causes any more. More importantly, it opens doors to get the support both of you need.

    Talking Point has provided the best support of them all as far as I am concerned - and I am sure you will find it so yourself :)
     
  6. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,561
    North West
    #6 stanleypj, Jan 17, 2016
    Last edited: Jan 17, 2016
    With hindsight, I probably did what you think your husband has done. Each time we attended the memory clinic a leading expert on dementia told us that there was a definite problem but that an exact diagnosis was not easy. Every avenue was explored until, 11 years after the initial referral, we did get a diagnosis, for what that was worth. After each appointment I spent time reminding my wife of all the positives that the expert professor had mentioned - he is a very positive guy, urging us to live as good a life as we could. We carried on doing everything we were still able to do, with increasingly frequent adaptations, finding ways to compensate somewhat for the abilities that were failing.

    Do I look back at this with regret? Absolutely not! A diagnosis is just a word or two. It's not uncommon for diagnoses to be changed, sometimes more than once as the condition progresses. Drugs may work a bit for some people and help with some of the symptoms. None of them helped Sue and she had some unpleasant side-effects.

    My feeling is that you and your loving husband should continue to concentrate on what you can still do and to find ways of compensating for the abilities that are less secure. We have had 16 years since the clinic referral and had some wonderful times. Of course, it's much more difficult now but life goes on. I hope you will have many more years together.
     
  7. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I agree with stan. This must be a really difficult time for all of you. You are so lucky to have so many loving people around you and a partner to support you but life probably doesn't feel at all lucky at the moment.

    One day at a time for all of you is all I can say at this stage, don't fast forward in your head if you can help it - it won't help. Staying in the moment, the trendy mindfulness, is the best offer I have.

    Please stay connected on here and your family too, there is so much help and support
     
  8. Irishgirl57

    Irishgirl57 Registered User

    Jan 21, 2014
    189
    Florida, USA
    Wow, I can really relate. Not only did my husband help me when I got myself in trouble, I was in such denial that we all went along for the ride . To me, when I got diagnosed at 54, it happened when it was supposed to. I started having cognitive issues a few years before, but there was no way I would've been ready for that diagnosis at that time. It was hard enough when it happened.

    I believe, and have always believed that everything happens when it's supposed to. Call it karma, call it my belief in God, Call it whatever you'd like but there is a natural order in life and a plan. I'm just really glad I didn't know about the plan and nor do I want to know what the future holds.

    I feel for you, I'm sending you hugs. It's such an early time in our lives to be experienced such chaos, but as Norm said in his video, I don't have to apologize for having dementia. So many people say to me, you're so young, you don't look like you have dementia. But they don't look in my shoes, nor my husband or family's . They aren't there when I get up in the middle of the night and wonder somewhere, or shower with my clothes on, or the daily exercise of finding all the things that I put away in odd places.

    Welcome to a place of comfort, and I hope you get as much out of this website as I do. Being with people who totally understand what you're going through, because we're there also.
     
  9. Gwyneth

    Gwyneth Registered User

    Nov 25, 2015
    48
    Oh Lynne, you have mirrored our situation completely and in a strange way your words provide comfort in knowing that all the frustrating signs and symptoms of part and parcel of it and just how easy it is to excuse them. Although my husband was in his mid to late 60s we brushed the occasional blips under the mat and put them down to senior moments. In fact my husband still does. We also thought that as he had given up part time work he had continued to do following professional retirement aged 55, the void had caused these issues but instead of grabbing the chance to try new things, his confidence seemed to fade and he became stuck in a rut. I brushed it off but looking back things were probably happening far earlier than I thought. As you say, hindsight is a wonderful thing. But what does one do? There are worries about doctors pre-empting dementia diagnoses to flag it up but that can be fraught with danger and in any case, what treatments can be offered? Our diagnosis in January 2013 after two visits to the memory clinic after a GP referral who did not perceive a problem only after I insisted, plus a blood flow and CT scan, was mild cognitive impairment. No pills, no treatment apart from an 8 week stimulation course, which involved games etc a year last summer. I have kept our lives as full and varied as possible. We remain sociable and travel and like you I have tried all sorts of high powered foods, vitamin B complex, cocunut oil etc but we now await more tests and scans because things have slipped badly this last few months. We have just been back to see the Memory nurse and his score was 76/100 on the standard test where previously it had pegged out around 82-86. I know we have reached a different stage and am prepared for that diagnosis whatever it is and hope that in our postcode area he may be offered drugs that may help. He is now nearly 73, still looks marvellous and is in good shape but sometimes he acts like an old man because he is much more uncertain, moody, grumpy, and oblivious to what is going on. I often beat myself up over the way I deal with it all or have dealt with it, think about Arlene Phillips regretting the way she treated her dad, but we are all human and because it is such a pig of a disease in that it is not physical, there are no instant fixes.
    Thanks for your words expressed in response to the original post. They have meaning to me too. Best wishes
    Gwyneth
     
  10. Beret

    Beret Registered User

    Sep 14, 2013
    14
    Merseyside
    Looking back I think I covered up for my wife's memory lapses and problems. She'd been diagnosed with depression early on and I was told memory loss was a symptom of that. As things got worse a close friend confided that it may be dementia and to get it checked. Being so close we try to be supportive and offer reassurance so I think it was meant with the best intentions. Stay positive and strong. x
     

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