1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. Callandergirl

    Callandergirl Registered User

    Apr 23, 2013
    I've posted previously about my OH who has frontal lobe dementia. Symptoms have been evident for almost 7 years but the last 9 months have been a living he'll for me with his wandering and his drinking. The drinking has now stopped thank goodness and the wandering is less than before but is still a problem. If I tried to keep him in he would become belligerent.

    My latest problem arises because I happened to mention to my GP last week that from March I will be looking after my grandchildren on 2 days of the week. She looked me straight in the eye and said that really my loyalty should be to my husband and that if I do these 2 days it will affect my health.

    How can I be less loyal to my husband? He doesn't want to do anything with me after 43 years of marriage. He would have me drive him around in the car all day every day and do nothing when we get to our destination. He just wants to go for coffee several times a day or travel on a bus!

    I've sacrificed our home and lifestyle after he had a mild heart attack 24 years ago, and since I retired over 6 years ago, he's ruined every holiday we've had and left me to do everything in the house and garden. I don't know this stranger any more.

    I love my 2 year old and 5 month old grandsons to bits and don't want to miss out on this time with them. They've been a lifeline to me this past year and it would really upset me not to be able to look after them for these 2 days. Grandad could be involved too but he opts out and has very little to do with them.

    I know it's the disease but I still have to live with this stranger 24/7. Thoughts please.......
  2. balloo

    balloo Registered User

    Sep 21, 2013
    I would think you gp may be right you will find it very hard I am registered childminder and up util 3 years ago I worked 52 hrs a week until MIL who has VD came to live with us .I have had to cut back work and now only do 15 hrs a week as MIL cannot cope with not being centre of attention. SHe eve now needs personal care so I cannot leave the children to do this. I now only do children from 5 yrs and up as they are independent where my MIL now is not. I must say if it was grandchildren then I would then have to think seriously about putting her in a home. I am prepared that I will have to give up working completely ,but at least I know I don't have grandchildren yet .
  3. starryuk

    starryuk Registered User

    Nov 8, 2012
    ...all of which is exactly why you should look after them for the two days. The joy and love these two little boys will bring you is what you need to keep your spirits up apart from anything else. I cannot believe the insensitivity shown by your Gp. To my mind, not taking this opportunity will affect your wellbeing. It would mine, anyway. I would be SO resentful and angry. And I dont see how it would be disloyal to your oh. It might be tricky to organise, but....

    Sorry this is a bit of a rant, hopefully you will get some good advice soon.
  4. Sue J

    Sue J Registered User

    Dec 9, 2009
    #4 Sue J, Dec 6, 2015
    Last edited: Dec 6, 2015
    I totally agree. The GP should be giving you help to get some support for your husband to free you up to be able to do this. The GPs response is unbelievable:eek:
  5. Essie

    Essie Registered User

    Feb 11, 2015
    How dare she say such an awful, inappropriate, unprofessional thing! Words fail me quite honestly Callandergirl, they really do.

    I'm sure others will be along with a more articulate response but my feelings are that it is not her place in any way shape or form to tell you 'where your loyalty lies' - if you have it in you a formal complaint would not, IMO, be inappropriate but I can appreciate you may not feel up to doing that in which case I would simply dismiss her remark and treat as the rubbish that it is.

    I'm sure you have thoroughly and fully thought through the arrangement to care for your grandchildren and discussed it in detail with your son/daughter and you all feel that this is a workable, doable change to your life that will be of benefit to you and as long as that is the case then please don't let careless, thoughtless words from one person spoil this for you.
  6. pony-mad

    pony-mad Registered User

    May 23, 2014
    Put your Grandchildren first. It is such a precious time and won't be repeated! Your GP has no idea how such a sacrifice could affect your mental health and make you resentful when you have already given so much of yourself! My grandchildren have kept me sane x

    Sent from my iPhone using Talking Point
  7. fizzie

    fizzie Registered User

    Jul 20, 2011
    It sounds as though your Grandchildren will give you a great deal of pleasure and I can't see any reason why any GP would deny you that. I hope you thoroughly enjoy the two days you spend with them - and others are right that your GP should be supporting you but my guess is that s/he really does have your best interests at heart and is just concerned about you without looking at the bigger picture. :)
  8. DMac

    DMac Registered User

    Jul 18, 2015
    Surrey, UK
    I wonder if the GP misunderstood your true feelings about looking after your grandsons? Perhaps she was concerned that you were being 'put upon', and was in effect giving you 'permission' to refuse to do it, if that is what you truly wanted to do?

    Whatever, you should feel free to do as you please. It sounds as if your grandsons will give you much joy at a time when you really need it. I do hope it works out that way for you. Equally, I hope that if this arrangement should become too much for you, you will feel free to say so. Perhaps it would help if you agreed to review the arrangement with your daughter/ son, say in a month's time, so that you can talk about how it is working for both you and for her/ him?
  9. Callandergirl

    Callandergirl Registered User

    Apr 23, 2013
    Thank you to everyone for your wise words. I'm going to stick to the plan until I can no longer do it, for whatever reason. You've all helped me make a big decision.
  10. Jennyc

    Jennyc Registered User

    Oct 3, 2011
    My husband was diagnosed with Alzheimer's just over 4 year's ago, at almost the same time as our first grandson was born to our older daughter and her husband. I have looked after Ollie one day a week ever since, and now look after both him and baby brother Rufus (1 year old a few week's ago) for one day a week. I love it. It keeps me sane.

    I think maybe frontal temporal dementia is a harder ride for you than Alzheimer's, with more difficult behaviour presenting. My husband cannot be relied upon for any help as he forgets what he is doing, but he loves seeing the grandsons, and we manage and I think it is what keeps me sane in a world of repetition and his inability these days to do even the simplest things, dress himself, shower, put the tv on etc. Ollie is great with him - come along grandad, don't be so slow, here are your pills, read to me, (sadly my husband can't manage this any more) etc, and involves him in his never ending imaginary games. A joy.

    So maybe, as someone suggested earlier, your GP was concerned as to whether you really wanted to do it and might need an excuse to cop out, but whatever, if you want to do it, I think it will be so lovely for you. Two days will be more tiring than my one, though!

    Good luck for next March.
  11. canary

    canary Registered User

    Feb 25, 2014
    South coast
    #11 canary, Dec 8, 2015
    Last edited: Dec 8, 2015
    My husband has just been diagnosed with FTD/Atypical Alz and I know that when he gets into one of his moods there can be quite a lot of shouting, swearing and aggression. I would not want to be looking after young children at the same time. What would happen if your husband decided to go walkabout when you had the children with you?
    I also know, however, that dementia does not affect everyone the same way - even FTD. Your husband may not be like this. Someone suggested that you agree with your daughter to try it for a month and reassess after that which strikes me as a very good plan.
  12. Callandergirl

    Callandergirl Registered User

    Apr 23, 2013
    Dilemma solved

    On the Tuesday before Christmas I had a surprise visit from our cpn. He was acting on the feedback of the mental health assistant who has worked with oh for 2 hours per week for the last 10 weeks and his own assessment of the situation. He was advising my daughter and myself to really press for admission to a care home asap. I couldn't bring myself to do it to him until Christmas was over so we waited. On Tuesday I phoned switch and explained
    the situation and was offered a place. OH refused to go and we didn't want to push the sectioning unless absolutely necessary. Well, last night he drank half a bottle of wine, threatened to hit me over the head with the bottle ( he was so tipsy he'd have missed) and then he phoned 999 to get a police officer to come and breathalise him to prove he wasn't drunk! I'm sure they had a good laugh in the control room.

    I'm laughing at this but I'm broken hearted that our 48 year relationship should have ended this way. He doesn't know he's not coming home
    and can't understand why he's had to go. I've been told not to go to visit him for a week and I won't. My biggest problem at the moment is that I feel so numb. I know I'm broken hearted and I feel guilty for the bad times he's given me these last 7 years and particularly the last 10 months but he's really a very kind loving husband and father beneath the dementia. I'm just not able to react. Am I normal??
  13. Emac

    Emac Registered User

    Mar 2, 2013
    Callandergirl, I am so sorry this has happened. Of course you will have mixed feelings, relief perhaps that you are no longer in this awful situation and sadness and maybe guilt as he is still your husband even though the Dementia has obliterated the personality of the person you love. Yes it is normal to feel conflicted but it sounds like you had little choice. You can't live with someone who has violent tendencies and he will be safer now (no wine) and so will you. Please don't feel guilty. It is the dementia that has brought you to this point. it is nothing you or your husband have done or could have done differently. Your living together has ended but you will still have a relationship with him assuming you want to. Be kind to yourself..I am sure you will be heartbroken for a while. xxx
  14. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    So sorry to hear you are in this heartbreaking situation, Callendargirl. Things have been so difficult for so long it's not surprising your feelings have shut down now. I'm sure there will be a long period of grief for you as you adjust to this huge change in your lives, but really you have no choice and I hope this gives you a chance to reestablish a more positive relationship with your husband.

    I'm glad you have your grandchildren in your life, I'm sure they will be a great consolation. Sending you love and a big hug.
  15. SabandMack

    SabandMack Registered User

    Dec 30, 2015
  16. pamann

    pamann Registered User

    Oct 28, 2013
    Hello callandergirl, my heart goes out to you, l had to make the hardest decision of my life 4months ago to put my hubby into a CH, l did not visit for 2wks which was advised, l now visit everyday some days are difficult, some are very good, he has settled and is reasonably happy. After 55yrs together it is just like courting again, l go home feeling ok, and then look forward to seeing him the next day, l know he is in the best place, as he was so difficult to look after at home, l hope you will start to feel better soon. Keep posting it does help you to cope.
  17. Callandergirl

    Callandergirl Registered User

    Apr 23, 2013
    Dilemma solved

    Thank you everyone for your comments. I appreciate them so much, I can't tell you how much. This site is a lifeline and I know it will help me cope in the days ahead. Meantime I wish you all a peaceful 2016 and as happy a year as is possible for you. Xx
  18. pony-mad

    pony-mad Registered User

    May 23, 2014
    Sorry that you have been through such a traumatic time; but the decision was taken out of your hands. Best wishes for 2016 xxx

    Sent from my iPhone using Talking Point
  19. Callandergirl

    Callandergirl Registered User

    Apr 23, 2013
    Best wishes to you too xx
  20. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    I was in a similar position to you and pamann 18 months ago and the decision was taken out of my hands. I thought I would feel relief, but instead I felt numb, guilty and very very sad and depressed. Good job my lovely dog kept me going.

    Now, after a struggle to get him out of a bad home, he is now in a lovely home, and I am able to spend quality time with him and take him out as well. I even had him home one day before Christmas so he could meet up with his son and grandchildren in our own house, which was lovely. I had no problem taking him back, as he kept on saying he wanted to go home when everyone had gone - home is somewhere in his head now - not any geographical place.

    He is still aggressive regarding personal care, and if anyone tries to take things he has collected away from him, but medication is calming that down a bit. The rest of the time he is walking about "doing work" (he thinks he built the home and that I live there too) and he is the lovely charming man he used to be - until the going home syndrome starts :confused: but I dont let that upset me too much now, as I know it isnt our home that he is talking about, and also he says lots of times how nice it is where he is.

    So it will get better - try and enjoy your time with your grandchildren and with him when you eventually get to see him and I hope he settles and that you both have a happier and more settled new year xxx

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