1. MissDiane

    MissDiane Registered User

    Oct 18, 2013
    Hello everyone, I've got a dilemma that is constantly going around in my head and I would really appreciate other peoples opinions. I'll try to keep it as short as possible but there is so much to consider.

    Mum and dad both have dementia. Mum is in residential care but this is not really working out due to her outbursts and the home are waiting for a CPN to assess her needs. if the deterioration is due to the dementia (which is will be) the they can no longer meet her needs. THey have said they would consider giving her some calming meds such as amotryptoline in order for her to stay in the home. The other residents sleep a lot and they don't want challenging residents.

    Mum and dad have been married 50 years, and dad is missing mum so much. But when they are together they argue like cat and dog most of the time. Although they do love each other dearly their relationship does not work like it should, and they wind each other up and there is verbal and physical abuse. Which is why mum had to go into care. Without dad around mum is so much better.

    When I see mum at the home her mood varies, from being very happy to be there to wishing she was dead. She is no longer able to understand why dad is not able to be with her although he visits 5 times a week. This upsets and frustrates her, why does he have to leave, who is he going home to, should they get divorced if he no longer wants her. All this and more is a constant in mums mind.

    She has started throwing glasses of water at one of the carers as this girl looks like one of the girls that cared for mum and dad at home. Mum had believed dad was having an affair, bringing up another woman's child etc. All crazy stuff but very real to mum.

    When dad visits he tells her he hates the situation, is not coping, wants her home, says she has to talk to me as I have LPA, and generally unsettles her. I have tried many times to talk to him about this but he either does not get it, or has not got the ability to. he has cognitive impairment and it is like talking to the cat!

    He will accept that mum can't move back home, but we have to go through all the reasons before he agrees it won't work. THis is a constant with him we have this conversation at least once a day. Mum has been in the home for 4 months.

    Mum says it's like prison, the bed isn't comfy, the rooms too small, she is bored, she is lonely, she hates being alone at night. She does have periods where she is quite lucid but then can suddenly go into a rant for hours about dad, and you cannot bring her out of it. I used to be able to but not now.

    So the home and social services have said start looking for a EMD home for mum. Dad is considering going with her but I've told him it won't work, and when we discuss it further he agrees.

    Mum would like to see more of me, but I have two young children and try to see her 3 times a week, one of which is a day out shopping or lunch with mum in her wheelchair, and dad comes too.

    I just don't know the answer, dad is not happy, mum is not happy. But they weren't happy together at home and it was a matter of safeguarding them both. Dad was so over friendly with the carers and it wound mum up. I can't get dad to change his behaviour, or mum.

    So is it a dementia home, or do we try changing her meds and introducing a sedative. I initially was appalled at the idea but she had seemed to settle well into the home until recently. and I've looked at other EMD homes and compared to the one she is in they are miles apart in terms of homeliness and it is a small home which suits mum. Wherever she goes she will take her behaviour with her and be tormented so is it better to leave her where she is with some sort of sedative. Absolutely not what I wanted to happen but is it better for mum to be more out of it as she is so tormented. She has been fully aware of her dementia but recently thinks there is nothing wrong with her. She was diagnosed with advanced dementia 2 years ago.

    Would an EMD home be better for her or do we go with the meds in the hope it will calm mum down so she can stay where she is. The staff are not training in dementia although the manager seems to have a lot of experience but she is not always on.

    Any thought would be appreciated.
  2. fizzie

    fizzie Registered User

    Jul 20, 2011
    Hi there
    First of all I think you are doing an amazing job - coping really well with both parents in a very difficult situation and caring for your own family. You need a hug and a pat on the back!!

    I've read your post a couple of times and in many ways it seems to me that in the last paragraph you have answered your own question - the homeliness, the cosiness of the home your mum is in suits her and is reasonably easily accessible for both you and your dad. Would it be worth at least trying the meds - I know what you mean about sedatives but if they help your Mum's peace of mind then maybe that is the most important factor, if they don't work out then maybe you will have to think again. One day at a time!! People with dementia (and me too) often have difficulty settling into different places so it could be very difficult to help her to settle.

    Your mum and dad's relationship has worked in its own way for a long time and they will find their own way through this with your support. Perhaps if you could persuade your dad to try a couple of clubs or social events he might find things easier and if he can join in some of the activities at the home maybe that will help too?

    Perhaps it would be wise to see if the meds work and then go from there. Please keep posting, we are all here to support you x
  3. MissDiane

    MissDiane Registered User

    Oct 18, 2013
    fizzie, thank you so much for your kind words and thoughts , it really does help to come on here and let it all out. Just to have others that understand makes a huge difference. So thank you. I think you are right, try the meds. This is what I was thinking deep down. Try it and see if it helps. If not, then the decision to move her will not be mine. Mum is only 200 yards away from me so I will try to squeeze in more visits. I know this would help mum with her mood. It's just that I feel so stretched at times and there is only me and dad that visit. Dad is resisting all opportunities to socialise at the moment. I'll have a think about what I can do about that. He needs things to do. Thanks again XX
  4. Rheme

    Rheme Registered User

    Nov 23, 2013
    #4 Rheme, Nov 7, 2015
    Last edited: Nov 7, 2015
    Hi MissDiane,

    The section of your post re your mum thinking dad is having affair(s) and bringing up another man's child struck a chord with me.

    Some years ago when mum was living at home she genuinely believed that my dad was having an affair (he wasn't and never would. He was very old school and absolutely adored mum). As time went on things developed even further with her mental health and was a strain on the family as a whole. Whilst it is very real to your mum it is also troublesome and tortuous and will wear her and everyone else down.

    We eventually got mum to see a psychiatrist (about 14 years ago) and she was put on Risperidone which sorted her out. Mum and dad's life became much calmer (without sedating mum) and they enjoyed a good quality of life together (real Darby and Joan) and it was lovely to see them together holding hands and supporting each other.

    Sadly dad passed away two years ago and mum is in a nursing home with multiple health issues including late stage dementia. Mum is still taking Risperidone and I am happy to report that it has been wonderful in managing her mental health.

    Maybe this is something to look at before sedating her. It might be that there may be some other medication out there that will solve problems before resorting to sedation.

    You have a very tough job on your hands and supporting both parents is extremely difficult and tiring. Good luck and remember to get some rest.
  5. Beate

    Beate Registered User

    May 21, 2014
    Obviously you must do what you think is right but personally I don't think it's fair to sedate someone so they become no bother just because the home isn't trained for dementia behaviour, instead of finding her an environment where they can deal with it in a kind and acceptable way. Maybe try something less strong first?
  6. garnuft

    garnuft Registered User

    Sep 7, 2012
    Hard thing to say, but I think it would probably help your Mum if she saw less of your Dad.

    Sent from my iPhone using Talking Point
  7. MissDiane

    MissDiane Registered User

    Oct 18, 2013
    I think I am jumping the gun a bit about the medication being a sedative. It was mentioned there may be meds that would help, and I suppose I presumed they really mean't a sedative but weren't telling me that. Just my suspicious mind getting carried away.

    So hopefully, if I talk to the mental health team/consultant I can ask about something which may help without any sedative effect.

    I do agree I would not want mum sedated just to stay in a non-dementia home. Hopefully there are other alternatives which the professionals can advise on.
  8. MissDiane

    MissDiane Registered User

    Oct 18, 2013
    Thank you so much for your post, I am glad your mum is doing well on her medication. I will make a not of it and talk to the CPN on Monday about the options which do not have a sedative effect.

    I agree about the strain on the whole family and how it wears mum and everyone around her down.

    It is interesting to hear our stories are similar. Can I ask what was your mum' diagnosis please? My mum has mixed dementia but he home are suggesting they think it is more like Lewy Body dementia but obviously they are not qualified to say that.

    It sounds like there is hope. Thank you XXX

  9. MissDiane

    MissDiane Registered User

    Oct 18, 2013
    Yes, this thought has crossed my mind quite a lot too.

  10. MissDiane

    MissDiane Registered User

    Oct 18, 2013
    I totally agree. I just presumed it would sedate her but I am now understanding there are other medications which wouldn't so i'm hoping we might find one that helps. I totally agree if the home can't manage mum then I need to find a home that can manage the situation better. I was just hoping to avoid moving her as I know this would upset her and she had settled well until the last few weeks.

  11. Raggedrobin

    Raggedrobin Registered User

    Jan 20, 2014
    A hard situation but I do agree trying different medication and allowing enough time for that to work (some drugs can take several weeks to kick in) would be worth trying before any other course of action is taken. Indeed this doesn't mean sedation but the help of a good psychiatrist in trying to get the right medication can get results. My Mum calmed down hugely once her medication was organized - she had been furiously waving her walking frame at the carers and was in danger of getting thrown out but we are now past all that and she has remained where she is.
  12. fizzie

    fizzie Registered User

    Jul 20, 2011
    Have they said they are going to sedate? I just assumed that they were going to sort out a medication that would suit her. Robin that is so right, sometimes it can take up to 6 weeks for the meds to bed in properly so they would need to have a fair chance. I think (only an opinion) that sometimes quality of care is as important as specific dementia training (which i agree is very important) but some people are born to care and some homes have amazingly good teams. If your Mum is somewhere where the carers are really good and she is 200 yards away from you then that has to carry some considerable weight in your decision.

    Although I agree that your Dad may be a bit disruptive, she has had so many changes (and they have been married a very long time and stayed married!!) that perhaps it might be best for both of them not to change too much too soon. You know your own family best so take it day by day and believe in yourself and keep posting - we will all support you x
  13. marionq

    marionq Registered User

    Apr 24, 2013
    There is an assumption that medication automatically means sedation. My husband is on Trazadone which has calmed down his desire to wander and get lost but it hasn't turned him into a zombie. Every day he is either at day care ( where he doesn't sleep at all) or he is out with me at Alz groups, galleries, cinema, shopping etc. So he is not sedated in the sense of being out of it but is manageable which makes it possible to live at home.

    In your case I would try the medication first and see how it goes.
  14. Bessieb

    Bessieb Registered User

    Jun 2, 2014
    Hi MissDiane,
    Just wanted to say that I feel for you and completely relate to the dilemma you have. I posted a thread a week or so ago about my parents (both in CH together) not getting on and starting to argue. It's very hard to be stuck in the middle and I completely know how you feel.
    It sounds as if it's worth giving the meds a go in the CH your Mum is currently 'settled' in. I put 'settled' as I know it's not perfect - my parents have days when they are happy and days when they hate it. But your Mum would probably not be any different in another CH so she probably is as settled as she is going to be.

    In the future, as things move on with your Mums and Dad's health it might be worth considering if your Dad can move into the same CH but with some space? In my parents CH they have a number of couples who get on to varying degrees (depending on their stage of AD and general compability) and they seem to have a variety of creative solutions for dealing with it. One couple have bedrooms on different floors but spend the day together, another share a bedroom but don't spend much of the day together. My parents are currently spending a bit too much time together (and are disagreeing as a result) and they are working on getting them to do separate activities.
    It is challenging with a couple who both have dementia but it is becoming more common and there are some good CH's who will have experience of managing it.

    It might not work in your situation but maybe worth considering and chatting to the CH about.

    Good luck with it all - can completely relate to the dilemma / guilt / anxiety etc etc!

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