1. Libby

    Libby Registered User

    May 20, 2006
    625
    North East
    Have just registered after reading a few messages and realising that I'm not the only one going through this!

    My mum (76) has had Alzheimers for a couple of years, but declined quite rapidly last year when my Dad died. Poor dad, we never realised how bad Mum was until we had to start looking after her. She was unable to be left on her own as she has always had a fear of being on her own, but the Alzheimers had made her so much worse, so the only thing for us to do was put her in a home.

    She's been in the home for over a year now, but still thinks that she's just staying the night, and that she'll be going home soon. Everytime I go and see her, she think's I've come to take her home.

    Recently, she has on a couple of occasions become quite difficult for the care staff insisting that she's going home and packing all her things into her handbag! She refuses to have a bath and I'm not sure if she's actually cleaned her teeth since she's been in there.

    I go to see her twice a week, an one of my brother goes about 3 times a week.

    What I'm wondering now is, are we the ones unsettling her and not allowing her to get used to being there, by visiting her so often? Has anyone else gone through this and does anyone have any suggestions?

    I'd love to hear from anyone in a similar position
     
  2. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    Hi Libby and welcome to the list. I'm sure you will be helped a lot by being here. My mum also went into a home after my dad died, 18 months ago now. My dad died very suddenly while I was away for the weekend (it was my birthday and the first time I had been away on my birthday!) She went into a council run EMI home that she had previously been in for respite care. We wanted her to stay there but it was under threat of closure so the social worker insisted we find somewhere else. There were only 2 EMI homes with places available and we had to make a decision very quickly. After she had been there for a year she fell and broke her hip. She spent 8 weeks in hospital and then went to a nursing home where she has been for nearly 4 months. She did seem to be settling down but just this week she has gone through a very unsettled phase for no apparent reason and is constantly talking about going home or, even worse, asking if she can come and live with me. I say even worse because I know it is not a viable option but it doesn't exactly make me feel good to be asked and know I have to refuse!

    I have also agonised over whether it is making her worse to see her as frequently as I do but I think you're between the devil and the deep blue sea on this one! Are you happy with the care home in general, because that is very important. If you feel that the place she is in can meet her needs better than anywhere else then that is the main thing. Your visits sound as though they are about right - often enough for you to keep an eye on her but not so often that you are going to burn yourself out. Between yourself and your brother she must be getting a visit most days.

    I'm not sure this is of much help to you but just wanted to say that I empathise and I am sure you will get lots of good advice from others.
     
  3. mocha

    mocha Registered User

    Feb 17, 2006
    176
    Lancs, England
    visits to home

    Hi Libby,
    I'm not quite in the circumstances as you because my husband is still at home but he is going into Respite for a week next week for the third time.
    The first time he went,the manager advised me not to visit at all unless they asked me to as it was supposed to be a break for me and can also be upsetting for my hubby. Needless to say he was fine and the second time he took off at a brisk walk towards his room. My daughter and myself were'gobsmacked' not to put a finer point on it as we didn't expect him to remember. I felt much happier at leaving him. Perhaps between you and your brother it might be better to go less often.
    What suits one may not suit another
    Good Luck
     
  4. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    I am somewhat biased on this issue, having had a bad experience with my mum's previous care home (posted elsewhere if anyone is interested). I do feel that if someone is visited regularly by concerned relatives then they are more likely to be better looked after. Obviously this is not quite the same for respite care as the whole point of it is to give carers a break and is usually only for a relatively short time.

    That is not to say that your visits couldn't be cut down a little. You can only try it and see.
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I don’t know what to say on that issue as mum lives with me .she was in emergency respite for nearly two mouths & I went in every day. I must admit that at one point I did contemplate leavening her there for good & when I told her, she was not happy & ever day she said she was not staying there for good.

    I use to see a few people in your situation where they pack there bags one person managed to get out & they found him at home 2nd time he was lost for 2 days, they must of moved him because after that we never saw him again, have seen few other getting upset ,but after a week or 2 they seem to settle down .

    What stage is your mother ,as it seem strange that after a year she has not settle , I know they do forget, but when you first put her in the home , did you tell her that now the care home was her new home ?

    As that what the care nurse say to the people, who want to go home.

    Its hard I know & sometime I think your in a no win situation with the issue of visiting or not as I agree what noelphobic when she said
    Gosh have said a lot :) & welcome to TP
     
  6. Libby

    Libby Registered User

    May 20, 2006
    625
    North East
    Thanks

    Thanks for your thoughts.

    Mum is in the middle stages, forgets who we all are (I have 2 brother and 2 sisters) and there's times when she thinks I'm her sister.

    I take your point about how she may be better looked after is she has more visitors. I think (!) we're fairly happy about the home. Some of the carers seem really nice, whereas some just seem to be there as it's a job. I know they don't get paid much, but I do wish sometimes they would make more of an effort to talk to her. They have a new manager, so I'm going to go in and have a word with her.

    We've told mum that it is her home now and that her house has been sold - I keep on telling her this as sometimes she's terrified of going home and being on her own. But then 5 minutes later she's asking if I'm taking her home now as she doens't like being there. I've always played Rummikub with her, but now, she can't remember what to do.

    For a long time she would keep asking where dad was and that was hard - not knowing whether to say he had died, or just to say he was in hospital. She doesn't ask as much now - she thinks now that he went off to a field and hasn't come back yet!

    If I'm honest, I feel as though I lost both parents last year - Mum is now someone that I just go and visit. Alzheimers is such a horrid thing.
     
  7. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    It means that if the care workers see you come in every day they put more effort in to your mum look after her better, as they know a love one is checking up on them.

    Like you say
    you visiting more you get to know & they get you know you more, you become friendly with them & that reflex back on to your mum,I don’t know really but did happen with my mum they seem to take more interest in mum ,when they realized I was visiting more often then other people . I know it should not be like that, but it seem it is.

    I suppose someone else can help you advice you better with coping with your mum repeating & forgetting & saying she wants to go home , I read on hear that other love one do that ,It must be hard emotional for you .
     
  8. moviefan318

    moviefan318 Registered User

    Apr 30, 2006
    32
    northamptonshire
    hi libby and and welcome to tp you say your fairly happy with the home,are they doing as much as they can to make you mum feel that it is her home now,the not talking to her much is very much the same as my mums previous home and mum was never happy there it was like she was there but not seen, but her new nursing home she has only been in a short time and is much happier and smiling all the while and is now talking more
    Someone told me go on your gut instinct and if you feel something is not right question it,as for visiting I found that I was visited more anyway when she was unhappy which was every day,now I visit every other day
    good luck carol
     
  9. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    I have taken quotes from 2 separate messages there so don't know if it will work! You mention how often you and one of your brothers visits, what about the other brother and the 2 sisters? Or do they live too far away?

    Myself and my sister visit my mum regularly, in my case it can vary from once a day to once a week, depending on what's happening at the time. She has been in her nursing home for nearly 4 months now and prior to that was in a care home for a year. My brother has never visited either home. He did see her when she was in hospital (she was in for 8 weeks from late November to late January), but only once. He does live a little further away than my sister and my self and doesn't have a car but there are good public transport links and it would probably only take him about half an hour to get there.
     
  10. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
     
  11. lou lou

    lou lou Registered User

    Nov 9, 2005
    46
    London
    Dear Libby,

    Cognition isn't just one neural circuit. There are several types of cognition in the human brain. Emotional cognition, spatial cognition, numerical, language etc. Any or all of these can fail in dementia. Most usually not all but highly specific areas of brain function are affected and in VaD and people affected with TIAs there may also be some degree of recovery.

    Unfortunately in AD who knows what area of the brain is involved but there is no element of recovery. In either case you can only deal with what you've got. Whatever you've got you can only be helpful if you feel able to cope so the most important thing of all is to make sure you look after yourself.

    Much love

    and kind regards to all on TP
     
  12. jarnee

    jarnee Registered User

    Mar 18, 2006
    181
    leicestershire
    Hi Libby.....( and Mel)

    Talk about feeling like you are in the same boat ??!!! :eek:

    Long story...very short...here goes... (Time span Jan 24th - March 7th)
    Mum looking after Dad...dad has AD....mum has cancer....mum suddenly takes turn for worse...mum goes into hospital....dad goes into respite & rapidly goes downhill....mum dies :( .....dad now in permanent home near us....no idea how much mum did or how bad he was until then




    SOUND FAMILIAR !!! ??? !!!

    Since going into care dad would not accept he had a wife :confused: Now won't accept I'm his daughter :confused: :confused:

    Anyway, onto your point, Libby. As dad is now nearer to me (only child) I see him virtually every day. He watches for us and tonight just as we were leaving him, one of the other residents (its a small place so I talk to most of the residents) took my hand and said, "He's very lucky to have you. You're a lovely girl visiting him so often" (I dunno about 'girl' ....I'm 40 !!)

    Having said all that, we went away this weekend so I didn't see him for 2 whole days (Oh the guilt), but today he was just as fine as ever.

    Go with your insticnt. She's your mum and if you do what your heart tells you it will be OK. I have found it helps to be prepared to do what suits dad and change my approach to whatever he needs at the time. He often ( almost daily)asks to go to Birkenhead (where he grew up) and sometimes I tell him we'll go in a few days, sometimes I say that if he stays here (the home) we can see him every day, but if he goes to Birkenhead we won't be able to see him very much ( he then agrees to stay put) and sometimes I say, well whatever he needs to hear really (I'm becoming a very good fibber :D )

    Good luck Libby.

    And to Libby & Mel, thanks for reminding me I'm not on my own in this dreadful situation of feeling I've lost both my parents since Christmas

    Jarnee
    X
     
  13. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    HI Jarnee and Libby
    I was so upset about the fact I didn't know how bad my mum was until after Dad died....kept telling myself over and over I could have done more to help him....he too was dying of cancer(although a fall hastened his death)....I just haven't been able to understand how I missed all the signs.....
    Jarnee you must be feeling pretty bad at the moment because your mum's death is so recent.....I found I never had the chance to grieve for my dad properly because I was suddenly plunged into the world of dementia...I cared for mum from Feb 2005 when dad died until April when my brother took over and that was the loneliest time of my life....away from my family and friends and missing my dad terribly...and not being able to talk to mum about him.
    I sometimes look at mum and think how cruel dementia is to take away all her memories.....In her eyes I am anything from the cleaner to a hotel manager.....but rarely,if at all,her daughter!
    Take care
    Wendy
    x
     
  14. jarnee

    jarnee Registered User

    Mar 18, 2006
    181
    leicestershire
    Mel,

    Yes, yes and yes again... that's exactly what I feel. Dreadfully guilty that maybe I could have helped mum with dad more, if only I'd known. Also, sometimes I get very upset that I haven't grieved properly cos dad is taking all my time (Only child so Only me to sort everything out)
    What a difference to find someone who KNOWS what this feels like.

    I made a "This is Your Life" style photo album of mum the other week, using lots of the photos I had brought back with me from their house. That helped. Brought dad over to our house for tea last week. I was really looking forward to it and he had a great time. But one chair at the dining table was empty. Mum wasn't there. It felt like she was missing. I got all upset, but as he doesn't remember her at all, I have to hide it. :(

    Thanks !!!
    x
     
  15. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Oh Jarnee....It does get easier I promise...just remember I've been there and you will get through it.....I even resented my mum in the early days because she took up too much of my time ...I just wanted to come to terms with losing dad but never had the time.....I've also been there with the photos....I found loads at their house which was a very happy/sad feeling....I've had to take them away from mum because she folds them up into tiny pieces if she finds them and ruins them....I'll have to put them in an album like you.
    I honestly think if I was an only child I would have crumbled by now.....it's just so much for one person to cope with
    I'm thinking of you and as I said it will get easier for you
    big hug
    wendy
    x
     
  16. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    ....certainly dad kept quiet about mum's dementia....always playing it down....but I think that's how their generation felt whereas we are quite happy to talk to anyone who'll listen really!!!
    x
    :)
     
  17. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Libby....my mum's handbag is like mary poppins'bag....I have to go through it daily because there are usually a few undesirable things in there.....remains of meals out....wet underwear....bars of soap...toilet rolls....my cheque book.....my tesco clubcard...toast....bread and butter....and today a cup and saucer!!
    Wendy:confused:
     
  18. moviefan318

    moviefan318 Registered User

    Apr 30, 2006
    32
    northamptonshire
    Jarnee and Mel
    what's happened to you and how you feel is just how I felt,being an only child is hard as you have to shoulder all the important decisions on your own and live with what you decide
    I found that I pushed the thought of dad to the back of my mind, then I would find a picture of him and break down, I still miss dad terribly even now,we spent so much time together because of his health problem and doing jobs around the house and garden, and not having him to talk to and ask his advice about mum. Carol
     
  19. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    #19 Lynne, May 22, 2006
    Last edited: May 22, 2006
    :D Wendy, you obviously didn't get to the bottom - there was probably a coffee in there for you too!

    Oh dear, as we often say "If you didn't laugh, you'd be crying all the time"
     
  20. Libby

    Libby Registered User

    May 20, 2006
    625
    North East
    Mel, Jarnie & Moviefan anyone else in the same position

    I feel so much better having read your messages and I had such a laugh at Mels mum keeping everything in her bag - sorry haven't quite sussed out how to get those blasted quotes in!! I have found sausage rolls, dirty underwear (yuk) and empty crisp packets which she doesn't really like me to throw away. (goodness knows what she thinks she's going to do with them) I'm also sure that she's been brushing her hair with her toothbrush - either that or she's got very hairy teeth!!?!:confused:

    I know exactly how you feel Mel when you say you feel as though you haven't grieved. I feel exactly the same - right from the day Dad died, all Mum was concerned about was that she was going to be on her own. It seemed as though the 55 years of marriage counted for nothing - all she could think about was herself. I find that really sad.

    This is why we knew she had to go into a home, she was just petrified of being on her own. Then there was the clearing of the house and trying to get it sold.

    I have 2 brothers and 2 sisters, so at least I haven't been on my own, but the eldest sister lives in Cardiff, and my eldest brother has found it more and more difficult to deal with Mum. Youngest sister lives about 45 minutes away, so it tends to be and my other brother who keep going in to see her.

    I too have gone through all the photos, and my goodness they collected a lot of photos. I made an album of their lives, starting from their first dates (they met on a blind date and neither of them dated anyone else!) I finished with a photo of their Ruby Wedding with all of us - and there's a lot with all the grandchildren. But she never seemed very intereseted in it, and kept telling me I could take it home if I wanted. I wouldn't care but it took me flaming ages to do it!!

    Anyway, it's so nice to talk to others in the same situation, so keep smiling and eating the chocolate!!

    Libby
     

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