Why does the 'happy' never last??

Discussion in 'ARCHIVE FORUM: Support discussions' started by Blue_Gremlin, Nov 27, 2006.

  1. Blue_Gremlin

    Blue_Gremlin Registered User

    Mar 15, 2006
    Morecambe, UK
    What do I do now??

    My last post was all full of happy over Jean having settled in to the home and now I have just been told that her sister has died!

    Do I tell her?? Is she lucid enough to understand it?? Will it set her back at the home and make her dementia worse?? How do I cope with her at another funeral when the last one we took her to was her daughter's??

    I don't know what to do!!!!!!

    Part of me thinks maybe it is kinder not to tell her but then the other part says that isn't fair since she was her closest relative and friend (and next door neighbour) for most of her life.

    Blue_Gremlin :(
  2. kazlou

    kazlou Registered User

    Feb 3, 2006
    We had the same problem last year when Mum's sister died on her birthday, we didn't tell her until later that day after taking her out for a meal and celebrating her day. We had a few tears but no real emotion, it was the same when our father died a few months earlier.

    Mum didn't attend her sisters funeral as it was too long a journey for her.
    At our fathers funeral we had no tears or emotion at all.

    I think with our Mum she is mid stage AD/VD but is unable to retain any information for more than a few seconds, and gets totally confused with anything new or different.

    It is a difficult decision.

  3. Lila13

    Lila13 Registered User

    Feb 24, 2006
    You'll never know whether it's better to tell her or not.

    One of my mother's last straws was a card telling her of the death of a friend, I couldn't stop her getting bad news, she could still open and read her own post.

    But if that hadn't happened there'd soon have been other last straws.

  4. maria29al

    maria29al Registered User

    Mar 15, 2006
    Its so hard to know what to do I agree.

    After Dad died in June, Mum has rapidly declined, then a few weeks ago we had to tell her her sister in law had died. She took it very well. The funeral is this Friday and Mum is going with my sister. Fingers crossed!

  5. Lila13

    Lila13 Registered User

    Feb 24, 2006
    I wished people wouldn't give my mother bad news, during her last year, but then some of them probably thought that about me, when I wrote to tell them that she had died.

  6. mel

    mel Registered User

    Apr 30, 2006
    Hi Blue Gremlin
    Oh this is so difficult.....When my father died in february 2005 my brother spent the best part of the day plucking up the courage to tell mum.....her reaction was a few tears but not grief as such ....within a few minutes she'd forgotten. She attended the funeral but wasn't really too sure whose it was and really enjoyed the family reunion. The next day there was no recollection at all.
    Its a hard decision for you and I suppose it depends what stage Jean is at......In my opinion theres no right or wrong decision here......all I can advise is follow your instincts........(sorry.....I'm sitting on the fence here!!!!)
    love xx
  7. Libby

    Libby Registered User

    May 20, 2006
    North East
    Hi Blue Gremlin

    My own personal advice would be - don't tell her - I'm not saying thats the right thing to do - I only go by experience.

    Since Dad died Feb 05, Mum has spent the time never being far from tears. Since she's been in the home, the only person that she became friends with died. We had to tell her because she spent so much time with her, but she became so confused, then didn't really understand what dying actually meant.

    So when one of her brothers died, we didn't tell her and when Dad's sister died a few months ago, we didn't tell her about that either. Mum may be further on than Jean, but she can't even remember her relatives, so we felt it was pointless to make her feel upset.

    Not sure if that helps at all

  8. Blue_Gremlin

    Blue_Gremlin Registered User

    Mar 15, 2006
    Morecambe, UK
    Hey everyone

    Well we have decided we have to tell her because she has a right to know but we are not going to keep on telling her. We will do it once then make something vague up if/when she asks again.

    We are going to tell her on friday afternoon but we are not going to take her to the funeral unless she insists. The funeral is next thursday and Gav and I will go but it would upset Jean too much if we made her go. Plus it means going back to the village we took her out of and she might not go back to the home if she sees her house.

    Anyway all I can do is hope it is the right thing and put my 'being the strong one' hat on once again :(

  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Blue Gremlin, I`m glad you`ve decided to tell your mum, because she DOES have a right to know. Whether she holds the information or not, remains to be seen, but at least your conscience will be clear.
    I hope it goes well for you. Sylvia
  10. Cate

    Cate Registered User

    Jul 2, 2006
    Newport, Gwent
    Hi Blue Gremlin

    I agree, I think you are right to tell her. I feel as carers we feel the need to protect, but if she didn't have AD, no question you would have told her, she would have been upset, and you would have given comfort and support. She may, or may not grasp the enormity of the situation, but in any event, I think you are doing the right thing.

    I also think you are right about the funeral, I think it may be difficult enough to cope with her own grief, let alone everyone elses, and I certainly would not want to drive past my mums old home and open up a whole can of worms, whats the point.

    Best wishes
  11. Blue_Gremlin

    Blue_Gremlin Registered User

    Mar 15, 2006
    Morecambe, UK
    Well we went to see Jean on Friday but we didn't tell her about her sister having died. We couldn't. When we got there she was so mixed up and wasn't making any sense. I THINK we had a 45 minute 'conversation' about smoking but most of it was repeated and from what I could understand she has regressed. She was talking about her parents as if they were still alive and like we knew them.

    She kept getting the ends of words wrong which made it very difficult to understand her. For example she wanted to say 'we set off from' but came out 'we sep off from' and then she would repeat the word 'sep' knowing it was wrong but not be able to make it the right word.

    She was having loads of difficulty understanding us too. It was like what we were saying was going into her brain then getting jumbled up and she was repeating what she thought we had said but it was rubbish.

    Then the manager of the home took gav off for a chat and it turns out Jean is being really agressive and fighting with the residents as well as the staff. She is a tiny little lady so it really took one girl (staff member) by surprise when she whacked her round the back of the head so hard it knocked her dizzy!!! Jean also hit a female resident who turned round and smacked her back with her walking stick!

    She is sooooooooooooooooooo much different to when we saw her last week I can't believe the change in her. They were getting the doctor to her but if they can't settle her down she will have to go into this awful mental hospital we have here and I really don't want that.

    Something MUST have happened to her in the past week to cause this. The only thing I can think is that she has got another UTI because the last time she had one she tried to climb out of an upstairs bedroom window and nearly pushed gav (who is about 5 times her size) down the stairs! I REALLY hope that is all it is and they can treat her and she will be ok but I am scared it is another step on the dementia ladder and they will turn round and say they can't cope with her - what do we do then?? The manager of the home said to me before she took Jean in 'the more challenging the better' because she used to be a mental health nurse in the community. It seems she is changing her mind.

    Anyway I should stop rambling on, I am just so angry that when I finally thought everything was going right all this happens! :mad:

  12. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    Telling or not telling

    We didn't tell our mum about her brother dying. She had been asking about all kinds of members of the family, especially my late dad, and very late mother in law who died 50 years ago. Each time I was completely floored, because telling her the truth just reduced her to great distress, guilt that she had missed the funeral, couldn't REMEMBER it, what had he died of? What a remiss wife and daughter in law she must be, what sorrow that her husband would never return.. .

    OK, I know people with AD have a right to grieve as much as anyone else, but who is there to help pick up the pieces? Not the care staff in the homes, because they don't have time, and not me either because I can't be there 24/7.

    She would get into a cycle of asking about my dad, sometimes ten or fifteen times in an afternoon and the truth just made her bereaved all over again, fifteen times. I eventually had to work out a way to change the subject somehow without actualy answering the question. I wrestled with the question about her right to know about her brother, but on balance I felt that she would be upset too much, might keep getting upset if she DID retain the information, and the deciding factor was that she wasn't actually asking about her brother anyway. He had passed out of her life before he died. She never asked about his health nor wanted contact, so it seemed pointless to tell her about his death. My (tough) decision was that if she ever asked about him, I would tell her the truth, but she never has asked. I take the same tough line about the news of her friends dying. Maybe this is all wrong, but if it prevents her unnecessary grief, then I'm sorry but the pragmatic is kinder than truthfulness, I think. However, everyone must make up their own minds and everyone's circumstances may be different. I am a huge believer in human rights, and maybe my mother has a human right to know about her brother's death. In her case,on balance, I think kindness is more important.
  13. daughter

    daughter Registered User

    Mar 16, 2005
    Hi Blue_Gremlin,

    Please don't feel bad that you didn't tell Jean in the end. Sometimes that agonising decision to tell or not is overtaken by events and we just do what seems right at the time. As Deborah says; "I think kindness is more important."

    With regards to the aggression, my Dad has had two spells of this now (where we thought his home would not take him back) but, after hospital assessments and being prescribed medication for the aggression, he is still at the home. It is frightening when you wonder what will happen if the aggression continues, but I am sure the homes have to say these things to cover themselves should the worst happen and the aggression cannot be controlled in some way. Hopefully it will turn out to be a UTI (although of course I wouldn't wish that on your Jean in normal circumstances).

    Although I am obviously glad that my Dad's aggression has subsided for the staff, in another way I was proud of his strength, it was kind of symbolic that he hadn't given up fighting this disease. Oh well, can't have it all ways, I guess.

    Best wishes,
  14. Michael E

    Michael E Registered User

    Apr 14, 2005
    Ronda Spain
    Not sure if it helps but Monique is fixated with her mother and father - for about a year now she asks when they will come to fetch her so she can go home on a daily basis - in the evenings on a 10 minute basis...

    A while ago my daughter felt I should always try to speak the truth (changing a habit of a lifetime!!!) I decided to give it a go... I began explaining to Monique that that her parents were dead (10-20 years ago) and were buried in Dreux.

    Dear oh dear - after eventually taking this in Monique became totally distressed because she was an orphan!! Terrified that she was alone -- deeply and sincerely scared to death that she had nobody in the world to rely on!!

    Some 6 months later she has forgotten they are dead and we go through the evening and sometimes daily ritual of discussing when they will come to fetch her, when the train will come to take her to them and many minor variations on that theme --- I will never, ever, tell her the truth about her parents terminal death - the fear that creates is awful - She still asks me and some of the carers if we will adopt her - so some vague memory of being an orphan remains...

    I think sometimes we tell the truth - lay it out as it is - as an easier option - I too think kindness is more important - but even that occasionally gets hard - around midnight!

  15. mw52

    mw52 Registered User

    Aug 25, 2006

    My mum suddenly started to be very noisy and aggressive and screaming and shouting all day and night. My sister and I were so worried that she would give herself a heart attack as she didn't pause for breath and when she did she was sort of hyper-ventilating. Anyway, the nursing home called the gp who spoke to the pscyhiatrist who did prescribe amisulpride - whihc seems to have worked as she is now much calmer. The downside is that she is sleepy all the time - and now getting more and more confused. I have been to see her to day and all she wanted me to do was take her to her bed and lie down.
    So, if you can ask the staff if there is anything they can give her. I think that they are being a bit hasty saying she will have to go into a "mental hospital" but agree - they say these things to cover their backs!
    Chin up (says she!!!)
  16. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    I believe in lying

    I'm a firm believer in telling whopping big lies if it makes the person feel better. My mother is now past the stage of asking for her mother. Six years ago I was stupid & said her mother had been dead for 30 years. Floods of tears, "Why wasn't I told?" etc etc etc. I wised up quickly & when she asked how her mother was I would say "Fine, fine - same as always". It's the literal truth after all.

    We never told her when her youngest sister & youngest brother died either. It would have been pointless.
  17. Blue_Gremlin

    Blue_Gremlin Registered User

    Mar 15, 2006
    Morecambe, UK
    Getting worse?

    Thank you to everyone who has responded to my ramblings, it does make me feel better.

    Today however, Jean is refusing to get out of bed and is refusing to eat, which is weird cos she loves to eat although she doesn't eat enough as she is stick thin.

    Gav asked if the doc had said anything about it possibly being another UTI and all the senior nurse said was 'that hasn't been mentioned - I will make a note of it'!! The OWNER of the place was supposed to inform the doc on FRIDAY about her having gone 'loopy' when she had a UTI in May when I told her about it and now this girl is going to 'make a note of it'???? Why hasn't it been addressed yet? :mad:

    I dread to think what will happen tomorrow - things seem to be getting worse not better!!

  18. Blue_Gremlin

    Blue_Gremlin Registered User

    Mar 15, 2006
    Morecambe, UK
    Better or worse?? I can't tell :(

    We went to see Jean yesterday and yes she is a lot calmer and no she isn't being agressive anymore but she had no clue who we were or why we were there. Am not even sure she knows who she is anymore. I know it is down to the meds she is on for the agression but she is just not Jean anymore.

    I don't know what to think about it since we only get 'snapshots' of her when we visit and the staff are there all the time and obviously they thought she needed to be medicated and we have no control over that but it seems such a shame. The week after she went in she was happy and chatty and more like the 'old Jean' that we know and love, then she got agressive and to a certain extent the stoppyness was part of being like old jean but then it went too far and now I don't know who she is.

    I am not sure that any of this is making any sense - I know it is all jumbled in my head and I don't think i am communicating it very well - just wanted to connect with you guys again - feeling a bit lost I guess :(

    Sorry for rambling on.

  19. cynron

    cynron Registered User

    Sep 26, 2005
    east sussex

    Blue Gremlin,
    My husband is also on a drug to calm him Quetiapine and it has had the same effect as you describe. I am going to ask the doc tommorrow if we can try him without it as he seems very confused now.

    regards Cynron x x
  20. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006

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