1. gentle giant

    gentle giant New member

    Apr 30, 2019
    5
    My wife who is 15yrs older than myself is suffering from dementia(as yet undiagnosed) and it seems to have got a lot worse over the last year. I am currently in full time employment as well as being my wifes carer and to be honest i'm struggling to cope. My wife is very much in denial and just puts it down to losing her memory but i have noticed major changes for example her hygiene standards have dropped both personal and around the house, is this normal behaviour for someone with dementia? I find myself getting increasingly agitated and it often escalates into row's after which i feel terrible. I would welcome any advise as i am feeling very isolated right now.
     
  2. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,915
    Nottinghamshire
    #2 Bunpoots, May 23, 2019
    Last edited: May 23, 2019
    Hi @gentle giant. What you describe is typical dementia behaviour. My dad used to deny he had dementia or any of his other health problems. I found it easiest not to disagree but just try to gently persuade him to do what needed to be done or do it myself.

    Not always easy with someone who thinks they're doing it all themselves.
     
  3. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,898
    N Ireland
    Hello @gentle giant and welcome to the forum. You have come to the right place for information and support.

    The best thing to do in this situation is have a chat with your GP. Many treatable conditions, such as depression, stress, thyroid problems, vitamin deficiencies etc., can cause dementia like symptoms so it's important to have a check-up. Please don't cause additional stress by jumping to the immediate conclusion that it's dementia. On the other hand, if it is dementia then a diagnosis may open up support for you. Maybe you could notify the GP of your concerns and collude in getting your wife called in for something like a well woman examination when appropriate checks can be made. I know such a ploy has been used in the past.

    Here is a link to a Society Fact sheet about the diagnosis issue. Just click the second line to read or print the document

    Assessment and diagnosis (426)
    PDF printable version

    Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
     
  4. canary

    canary Registered User

    Feb 25, 2014
    10,268
    Female
    South coast
    Im afraid that the inability to understand that there is something wrong with you is very common in dementia - in fact, it is one of the symptoms (anosognosia).

    Also typical is the lowering of standards in housework and personal hygiene as they forget how to do it properly, but because of the anosognosia, they think that they are still doing everything as usual.
     
  5. Philbo

    Philbo Registered User

    Feb 28, 2017
    666
    Male
    Kent
    Hi @gentle giant

    As well as the memory lapses and repeating herself, my wife also stopped washing her hair, changing underwear etc. I first became aware when I realised that there were none of her items in the washing basket. Then even her mother commented that her hair was looking greasy, to which my wife reacted rather crossly.

    I was at least eventually able to get her to the doctors and it took almost a year before she was diagnosed with dementia (FTD).

    Like many folk on this forum, I suspect, I developed various coping strategies. For instance, whilst she was in the shower, I would swap her knickers for clean ones and put worn clothes in the washing basket, which she didn't seem to notice.

    So I gradually took over doing things like the housework, personal care etc, as her capabilities declined. It was tough having to learn how to cook, use the oven and washing machine after years of being looked after so well.:rolleyes:

    At least when the changes first became more noticeable, I had just taken early retirement (was 59 then). The upside was that I was able to take on these additional tasks but the downside was the feeling of being trapped - plus of course, the anticipatory grief of what lay ahead, shattered dreams etc, etc.:(

    So 5+ years later, the only way I have coped (so far, at least), is to seek out opportunities for respite. She has a respite visitor every Monday for 3 hours, Tuesdays at a dementia "activity morning" and she goes to a day centre on Wednesdays. I also "adopted" a local pub in the town - something we had never done before, but as her awareness diminished, I was able to get away with.;) The new friends we have made there, have truly been my saviours.

    Of course, I realise that your situation is different, but I hope that you will be able to develop your own ways of coping. I have been thankful for all the good advice available from the lovely people here on Talking Point, so keep posting and good luck.

    Best wishes
    Phil
     
  6. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,293
    Female
    South of the Border
    Getting a diagnosis opens many doors. The hardest part is getting your OH to the Dr for that process. Write to the Dr - acknowledge that you do not expect a reply because of patient confidentiality - outline all your concerns as clearly and concisely as you can. Then ask the Dr to ask for your OH to come in on pretense of a check up and let the Dr take it from there. It is also important to persuade your OH to sign permission for you to talk directly to Dr.

    You are both embarking on a journey that you do not want to be on, and that has no happy ending - but stay on here, there is lots to learn that will make things more bearable - and lots of lovely people who are further along the journey than yourself, and know the pitfalls to look out for.....

    Good Luck - we are all with you on this....
     
  7. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    367
    Sheffield
    I’m afraid it’s a long struggle all the way but first thing get a diagnosis. You can then apply for attendance allowance. There is also medication that can help. Day centres are good too if she will go. My Husband doesn’t think there is anything wrong with him and that’s the hardest part trying to explain things to him. He was diagnosed 3 years ago but the reasoning went 7 years before that.

    You will get good advice from this site so please keep posting.
     
  8. gentle giant

    gentle giant New member

    Apr 30, 2019
    5
    Thanks Phil, what you describe is almost a mirror image of my life right now although i have no family around to help. It's comforting to know that there is help out there and a possibility of a life beyond being a carer.
     
  9. gentle giant

    gentle giant New member

    Apr 30, 2019
    5
    Thanks for your reply' we have been to the GP and have been given an urgent referral to a memory clinic. My wife has also undergone a CT scan of the brain for which we are awaiting results. Thanks also for the additional info and the welcome to the forum which is already proving invaluable.
     
  10. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,293
    Female
    South of the Border
    The beginnings are really difficult to come to terms with, but once you have things sorted like Attendance Allowance, reduction in Council Tax ( maybe allowable) PoA etc Carers Assessment, Care Plan and plan'B' - once all in place, life does settle to some sort pattern - not how you want it, but things do slot together somewhat..... stay on here for your own sake....
     
  11. MimiLexis

    MimiLexis Registered User

    Mar 31, 2019
    25
    Hi there....I can appreciate how hard it is to juggle being a full time carer and in full time employment. I have recently only 2 weeks ago left my job to be home more as dad needs me more than ever. I live with my dad and have done for 2 years now.

    I hope you get the diagnosis you need then you can claim attendance allowance for your wife which may ease up a bit of pressure if you choose to reduce your working hours. Along with opening up some doors hopefully so you can get the help you so rightly need. It is far from easy and I know I will miss the money but daddy needs me more so it was time to finish work. However I have got a little 2 hours a morning 5 days cleaning ar a local car showroom which isn't much but it falls within the threshold of what I'm allowed to earn in order to claim Carers Allowance.

    Good luck and let us know how things go.

    Mimi
     
  12. canary

    canary Registered User

    Feb 25, 2014
    10,268
    Female
    South coast
    Hi @MimiLexis
    Now you have stopped working to care for your dad I do hope that you are claiming Carers Allowance.I know its not a huge amount, but every little helps as they say, and also it pays your NI so you will get your pension.
     
  13. MimiLexis

    MimiLexis Registered User

    Mar 31, 2019
    25
    Yes I have put in an application and waiting their decision, it can take up to 6 weeks and yes every penny helps and is needed!
     
  14. Lladro

    Lladro Registered User

    May 1, 2019
    45
    Hi, my wife is 10 years older than I and we are now in the third year following diagnosis . Everything that you are describing ( and more Im sure ) seems to be typical behaviour during the first years. Denial especially is something that persisted for the first 18 months in our situation. it is as frustrating as hell, I know, but there will come a time when the cycle turns to realisation and perhaps reluctant acceptance. The arguments, I can identify with too, as I can with the feeling terrible - It is ridiculously difficult to come to terms with coping, but you will. As others have already mentioned, the confirmed diagnosis is really important and will allow some doors to open with help and advice. You will find a way to navigate your way through this situation. Love can conquer many things.
     
  15. canary

    canary Registered User

    Feb 25, 2014
    10,268
    Female
    South coast
    It doesnt always. Mum refused to see a doctor about her memory and I had to use stealth to get her there and she never accepted her diagnosis - she was convinced that there was nothing at all wrong with her (except for a poor memory which she said was due to her age!) right up until the time she passed away.
     
  16. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    392
    My OH has never accepted but he has now (5 years after diagnosis and more than twice that since first symptoms) become completely unaware that he has eoAD. So much so that when we had an assessment for a Care home recently we had a totally frank conversation about all his needs in front of him and he had no idea. Lives in his own world now but still very physically fit and active.
     
  17. Lyd

    Lyd Registered User

    May 27, 2019
    28
    Wow thats amazing that she agreed to go with you to the doctors. it took us so long and so much subtifuge to get my MIL to agree to go. i think it was because she was afraid.
    We are all on different journeys but we can still keep each other company as we travel.
     

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