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.

Forgets to see grandchildren

Discussion in 'I have a partner with dementia' started by angelhugs, Jan 21, 2019.

  1. angelhugs

    angelhugs Registered User

    Jan 12, 2019
    32
    I am so upset that my OH forgets to see our grandchildren. He is still working and I see them on my own. My daughter in law is asking me now when he is coming to see them and I am at a loss what to say. I feel so upset about it but as my husband hasn’t been diagnosed yet I can’t say. I know he just forgets but it just looks like he is being cold and not interested. He doesn’t want anyone to know that he has memory problems. I’m the only person who knows. What can I do?
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,839
    N Ireland
    Dementia causes changes to behaviour that can become quite challenging, as you are already discovering.

    If people don't know the truth they can't ever understand behaviour that they may find insulting etc.

    When my wife was diagnosed she asked me to keep it a secret. I told all family and friends and have never regretted that as they have all been understanding and one or two have even been supportive.
     
  3. Baggybreeks

    Baggybreeks Registered User

    Mar 22, 2017
    75
    Scotland
    So sorry to hear that. It’s incredibly difficult for everyone.
    My husband was the same at the beginning before diagnosis, around the same time as our first grandchild was due . Very sad .
    But this disease takes over the person and everyone around them.
    Each stage has another effect and there is no point in fighting. Roll with it and it will be less stressful hopefully.
    Perhaps you could tell your son and daughter in law but to keep it confidential.
    My husband always said there was wrong with him , even after diagnosis.
    It is very difficult to keep it to yourself . Have you spoken to your doctor about getting him tested?
    Good luck,and hopefully you can get some help.
    Keep posting.
     
  4. Baggybreeks

    Baggybreeks Registered User

    Mar 22, 2017
    75
    Scotland
    Just reread my post, I meant to say my husband said he had nothing wrong with him, even with all the people involved after diagnosis.
    I told friends and family as his behaviour became more difficult to explain. Lost some friends which was hurtful but others became more supportive.
     
  5. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    353
    Sheffield
    I would tell your son and daughter in law, they will find out anyway soon. You will need lots of support just tell them not to mention it to him!

    It wii stop them thinking he doesn’t care about his grandchildren and wondering why?
     
  6. Beate

    Beate Registered User

    May 21, 2014
    11,640
    Female
    London
    You don't need a diagnosis to figure out that someone has memory problems. By not telling your daughter in law you're making him out to be the bad guy even though he can't help it. That's not particularly fair to him so why don't you tell your daughter in law you are trying to get a diagnosis but please be patient with him instead of angry. It really never helps to keep silent about dementia, and it's nothing to be ashamed of. If you tell them and also ask for support now, it won't come out of the blue later.
     
  7. WA123

    WA123 Registered User

    Jan 20, 2018
    85
    I told all of our friends and also told them how they could help (most importantly when we're out at village events or just socialising don't ask him questions as it puts him on edge). This has worked brilliantly as everyone knows what to do, no-one is anxious and he's really relaxed in their company. I think sometimes friends and family drift away because they don't know what to expect or what to do. They also have that awful image in their head of what they think dementia looks like. In our situation we haven't lost a single friend and have even re-connected with those we'd lost touch with over the years. As everyone here says, don't hide it. My husband has never asked if everyone knows, all he sees is that people are as relaxed with him as they always were. It's also helped his confidence which means he's much more outgoing than he was in the months leading up to the diagnosis and all of our friends have noticed the improvement.
     
  8. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    112
    Hi angel hugs , sorry to hear about your OH. My mum still doesn't feel there is anything wrong with her, 3 years down the line. She initially didn't want anyone to know she was having memory problems , but we told family members and close friends so they were aware and all were supportive. Could you arrange to visit or have family over when your OH isn't working, but you would be with him too.
     
  9. RosettaT

    RosettaT Registered User

    Sep 9, 2018
    200
    Female
    Mid Lincs
    My husband didn't want anyone outside the family to know and it wasn't until he was hospitalised Christmas day that I told our friends. I still feel a little disloyal to him but it was the best thing I did. I no longer feel I need to 'cover' for him or make excuses for him, it was a big relief and to be honest our friends obviously knew something wasn't right anyway. They have been fantastic one of them ringing everyday since he was hospitalised and letting the others know how he is.
     
  10. PalSal

    PalSal Registered User

    Clarity and openness regarding his condition and diagnosis is essential. There is no moral judgement here, he did not choose to have this disease. I am with Beate on this , it is important for people to know and understand that this is the disease which causes him to behave in this way in appropriately and out of character (ie forgetting to visit children and grandchildren) There is no shame, no malice on his part, just the progression of the disease. Your family needs to be part of the change and be with you both as you must handle the situation.
    Denial on his part, not being able to face his diagnosis or truly having no self awareness of his condition is sadly all a part of this disease.
    My experience, in the beginning of the disease was strange. Initially, I had family members who could not cope with the diagnosis. But thankfully, his family accepted it and our good friends remained close and supportive. The acquaintances or party relationships fell away. I believe that some people were frightened as we were so young, and that got them thinking it could happen to them too. They could not face that, or did not know how to handle that. And they did not wish to see the changes to our lives, it made them uncomfortable.
    But our children and my husbands family and our good friends have stayed the course and helped to support us in many ways. Its not over for us yet.................
     
  11. angelhugs

    angelhugs Registered User

    Jan 12, 2019
    32
    Thank you all so much for your help and advice. I know it can’t be hidden but I think deep down I am hoping I’m wrong and it’s just stress that’s causing his memory problems. I have spoken to our GP on my own now and he has told me it’s more than stress, he scored 12/28 on the MMSE. We are seeing a Neurologist tomorrow, I think I’m still living in hope that it’s just stress because I’m scared. I took him to the GP over 2 years ago and his MMSE score was fine. He seen a Neurologist and the MMSE was fine so it was all put down to stress. I knew it was more than stress then but believed them. Nobody knows he is seeing the Neurologist tomorrow but I will speak to our children once I know what is happening. It’s like we are both in denial unless it’s been confirmed although we both know it’s a problem. He accepts help from me now more readily, a diary and reminder lists for work, directions in the car. It all seems so unfair. Thank you all it’s so good to share my fears with you all knowing you understand. My husband’s Mum was diagnosed with AD at 60 so he has always worried about it.
    Love and hugs to you all ❤️
     
  12. WA123

    WA123 Registered User

    Jan 20, 2018
    85
    I managed to pretend my husband was suffering from anxiety and depression right up until the minute we were given the diagnosis of dementia. At first I only told 4 very close friends but after a few weeks with their help I leaked the news out. Turns out I was the only one who hadn't seen what was right in front of me and which everyone else had realised long before. I cried almost every day for 3 months but then realised that there had to be another way as we were both so miserable. I put strategies in place and have to say that, 13 months down the line, life is better than it's been for a very long time. For me acceptance has been the key. I thought a few days ago that the further away we've got from our old life the harder it is to remember how life used to be but I think it's more that I now live in the moment, try to relax, not to plan and just wait and see what happens. I have no idea how long this hiatus will last and life certainly isn't perfect but for now things could be worse (and have been).
     
  13. angelhugs

    angelhugs Registered User

    Jan 12, 2019
    32
    Thank you for sharing your experiences with me. I’m wondering now if other people have already noticed things like with your husband, I know our children have. How did you cope when you were told the diagnosis? We are going to the Neurologist today and I feel terrified. I don’t want to fall apart, I want to be strong for my husband because I know he is worried sick. I can’t tell him everything is going to be ok because it’s not.
     
  14. WA123

    WA123 Registered User

    Jan 20, 2018
    85
    In the moment of being told I cried and my husband went white. The consultant apologised for making me cry then asked us to wait while they dispensed a prescription. We were given Donepezil and then sent on our way. No more information, no support package just got in the car and drove home in silence. I really did cry almost every day for the first three months. At one point I cried continuously for three days. I then went to the doctors for help but was prescribed 10 sleeping tablets and told to go home and talk to friends. That's something I'm not very good at so I decided I needed to sort myself out and change my outlook hence the acceptance. When we got the diagnosis I thought our world had come to an end but it hadn't. It's not what we planned but neither is it the worst thing that could have happened to us. Almost everyone I know has some sort of rubbish going on in their lives so we're not unique. It's certainly made me a stronger person and the number of new skills I've acquired (particularly patience) is amazing. I've also started writing a blog focusing as much as possible on the positives in our life and that has helped more than anything. As C. S. Lewis said 'Crying is all very well in its way while it lasts but you have to stop sooner or later and then you still have to decide what to do'.
     
  15. Lawson58

    Lawson58 Registered User

    There were two years of troubling and destructive behaviour with OH in complete denial then another year of working firstly with our GP then the specialists before we got a diagnosis.

    But the appointment with the geriatrician to get the diagnosis turned out to be quite a performance. OH was so stressed that he was in a vile mood and told me that I was not to be there at the appointment . I was a bit nonplussed so rang the doctor's room for some advice. They of course had seen all of this before and suggested that I go in earlier without telling OH.

    So I got in an hour early, the staff made me coffee and then the geriatrician called me in for a chat and told me of my husband's diagnosis. (Seems that doctors in Australia are quite pragmatic about PoAs, have never ever been asked for one.)

    OH was shocked to see that I had arrived before him and snarled at me as he went in to see the doctor.
    I had been expecting the diagnosis so was neither shocked or surprised. Outside, I asked OH what the doctor had told him and he happily replied that he only had a 'little bit of Alzheimer's'.

    And everything returned to normal, mostly denial with occasional flashes of insight, and a gradual spiral downwards.
     
  16. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    371
    Female
    Basingstoke, Hampshire
    I first put my husband's behavior down to old age. It was a while before I realised there was more to it. I didn't say anything to my daughter at first until she said to me one day "Mum I think Dad's drinking". Obviously I then had to tell her.
     
  17. angelhugs

    angelhugs Registered User

    Jan 12, 2019
    32
    My heart goes out to you, it’s all just so sad Well we still don’t have a diagnosis. The Neurologist wants my husband to have the Neuropsychological testing done again. I understand he has to be sure as he said he doesn’t want to give him that label. I really found it hard in the appointment with him as I could have said more to explain his problems but found myself unable to as it felt so uncomfortable talking about him while he was there. It felt like I would embarrass him or humiliate him which was the last thing I wanted to do. I know he is having problems with his judgment in his business but he thinks he’s fine so how could I humiliate him like that? Just have to plod on again.
     
  18. Lynmax

    Lynmax Registered User

    Nov 1, 2016
    192
    I also found it difficult to talk about my concerns in front of my mum so I wrote a letter and passed it to the nurse who came to assess her after a visit. This seemed to help as when we next saw her, she took everything I wrote into consideration without me needing to vocalise my concerns.

    Is this something you could do?
     
  19. angelhugs

    angelhugs Registered User

    Jan 12, 2019
    32
    I was going to write a letter and give it to the Neurologist when we went in and it was a good job I didn’t because he read out the letter from the GP which was a bit detailed and embarrassing for my husband. If he mentioned my letter I would have been mortified. I could probably do it next time though and specifically say not to mention it. Our GP is good when I speak to him, he takes all my concerns on board and has said it’s definitely more than stress.
     
  20. AliceA

    AliceA Registered User

    May 27, 2016
    2,255
    Wise and helpful words, thank you. My lesson in this is unconditional love to everyone involved including myself, still studying the subject not quite ready for the finals! Xxx
     

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