1. mel

    mel Registered User

    Apr 30, 2006
    My dad died in Feb 2005.He had been caring for mum for the last 4 years at least.Although I lived 60 miles away I visited mum and dad regularly and they visited us. I had no idea how bad my mum was until he died....mum was always very quiet when she was with him....he always said she was very deaf and he always did the talking for both of them.As soon as dad died it became obvious mum could not fend for herself and my brother took over full time care of her with me going to relieve him so that he could go home to spend time with his wife! To cut a long story short mum has now moved in with us as from last weekend (she thinks it is just a holiday). I knew it would be hard but she is being SO difficult....insists our house is hers....tries to escape...orders me out of "her house"....says I am neglecting her....says I am not her daughter because I keep her locked in her bedroom constantly(totally untrue although we do keep the house exit doors locked because if she escapes she'll get lost.....In reality I am at her beck and call...I have a husband and 3 kids and I do everything for her...I even take her out every single day but of course she forgets....How long will it take her to settle?...It's like being a new mum again...I'm up during the night because I'm afraid she'll scare the kids and she needs her sheets changing quite often since she's been here!! Any tips to settle her down?!!!
  2. jarnee

    jarnee Registered User

    Mar 18, 2006
    Hiya Mel,

    Firstly welcome to TP...You've come to the right place.

    Yours is a similar story to mine ( if you reverse the parents...my mum died etc etc)

    The difference is, my dad has gome into residential care.

    Have you contacted a GP ?
    Is your mum on any medication ?
    She may need some kind of medication to settle her.

    I am NOT in favour of drugging people up, but it helped dad to settle and now he's fine they are hoping to reduce the dosage. Familiarity seems to be important, too.
    I cannot speak with amy experience of caring for a loved one at home, thoug, I'm afraid, but lots of fab people here can.

    Good luck and keep us posted

  3. SallyB

    SallyB Registered User

    May 7, 2005
    Hi Mel,

    Just wanted to say hi and welcome. I carn't offer advice on moving a loved one in. I have been thinking about it lately but now realise that my Dad has to go into a home. Not easy decisions for us all to make.

    You will get some good advice on here I am sure.

    Good Luck.

  4. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Mel,
    How much of this was going on before she moved in with you? Is it new behaviour, or is it that you are more aware of it? You have certainly got your hands very full, mum husband and three children - you are braver than I am!
    Is mum registered with a local GP, and do you have a CPN for support - if I was in your position I would be looking to get the support of a CPN; if incontinence (at night) is a problem the doctor will be able to refer you to the district nurse who may be able to provide pads.
    Sorry, can't be of much help. Keep us informed how you are getting on.
    Best wishes
  5. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Hello Mel

    We were in the same position as you in November 2004, when my Dad had a massive stroke and died 2 weeks later.

    Mum was vey confused and incontinent at night, and that was in her own home, she wandered off and got lost, it was a nightmare.

    We could not manage to care for her at home for financial and emotional reasons, so we very reluctantly placed her in residential care.

    It was the best thing for her and she is really well looked after 24/7, is relaxed most of the time and we get to see her as often as we like.

    We all need to do what is the right thing for our loved ones and that includes our husbands and children too.

    Is it possible for you to share the care with your brother, or get some day care for your Mum? It sounds as if this situation is too much for you and your family to cope with at the moment.

    I really do wish you well, it is a tough time, I know,

  6. mel

    mel Registered User

    Apr 30, 2006
    Thanks for your replies ...it lifts me up to know there are so many people in similar situations! For the last year since dad died mum has been difficult but not this difficult! I guess things will settle. Mum did see a CPN where she used to live but I'm going to register her with my GP tomorrow and discuss medication....but I also have to sort myself out too! The range of emotions I'm going through is awful....At times I feel as if I hate her which is terrible....I forgot to say yesterday she threw her walking stick across the room, said she was going to kill herself and threw herself on the floor and pretended (not very well) to be dead!! Seems very bizarre to see an 82 year old doing that!!
    We're still not sure what type of dementia mum has ....evidently the only way to tell is to have a MRI scan which to be honest I dont think she could cope with...I think she'd be very frightened.
    A year on and I still feel quite ignorant!
    I've been in touch with Sheffield Alzheimers society who seem pretty helpful.
    I suppose its a period of major readjustment for all of us.
  7. rummy

    rummy Registered User

    Jul 15, 2005
    I feel so badly for you. If I had three kids to look after and my Mom I think I'd loose my own mind or take up bourbon!
    All kidding aside. Your have a difficult situation for sure. My mom still lives with my step Dad down the street but we know the moment something happens to him, Mom will live with us and life just won't be the same for us after that. It is hard now because we are so tied to their care. I also know that a nursing home is ahead for us and I dread it so much. But I try not to look too far into the future or I'll get depressed.
    My Mom gets very anxious and often thinks her husband is a stranger and is scared to death. I can only imagine how awful it would be to think a strange man had invaded my house and wouldn't leave! I'm just glad we removed the shot gun from the house or she might think she has to protect herself! These episodes pass but we know they will be back. The doctor recomended a antianxiety medication be increased and although we haven't done it yet, we need to. It takes so much out of her to go through those episodes and I think the medication is worth a try.
    Any change in her life,( my Dad going into the hospital, someone dying, a visitor from out of town) seems to worsen my Mom's condition. She just doesn't have the coping skills for it anymore and doesn't understand. She doesn't remember how to do any task and she doesn't remember where anything is, where she puts things or what to do with common things like a telephone or utensil. Memory of people she knows, comes and goes.
    A book that really helped me in dealing with my Mom is "The Validation Breakthrough" by Naomi Feil. Perhaps it would also help you. I read everything I can get my hands on that I think will help.
    I probably haven't helped you much, the others that know your system give such wonderful advice. Just know we are all in this together and TP is wonderful for unloading.
    Take care,
  8. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Mel,
    It is not terrible. Having someone else within our nuclear family unit is always difficult, even when they are polite, charming and helpful - it is an invasion of our space. Having a demanding mum, who throws tantrums, is confused, and gives us interrupted nights is going to be very difficult. What you feel is normal. You obviously love your mum dearly, if not you would not be trying to do this for her.

    I am going to stick my oar in now, with less subtlety than Kathleen. Have you considered residential care? My grandfather, who was 80 at the time, lived with us for 9 months when I was 17. The impact that had on me and my mum (Brother was away at university, and dad frequently away working)was immense. My mum really struggled; she would dread walking in from work some days - we loved my grandad dearly, but it was so hard.

    I hope you don't mind me saying this. I know that my husband, children and I would not have been able to care for my mum for any length of time, without it having a detrimental affect on all of us, and probably a detrimental effect on my relationship with my mum.

    Just wanted to suggest that there may be other routes than the one that you have chosen at present. Do take care, and scream on here whenever you feel the need.
    Love Amy
  9. mel

    mel Registered User

    Apr 30, 2006
    Hi Amy
    No ...I don't think you are sticking your oar in at all!The problem I have is that both mum's sisters were affected the same and mum used to get so upset when she visited them in care homes and I promised her I would never do that to her and of course that has always stayed in my mind....In fact when dad died she said then "PLEASE don't put me in a home!". I realise the time will come when that will happen but I do feel as if I have to give it a go!
    I've also made it perfectly clear to my kids that if I'm affected in the future I want to go into care....Don't want to put them through this!!!
    My kids are 17,15 and 11.....It's the 11 year old I worry about most....He was so shocked to see nanna's tantrum yesterday.....I think the most important thing is to keep our sense of humour too !
  10. DickG

    DickG Registered User

    Feb 26, 2006
    Hi Mel

    I believe that when AD strikes all previous promises and vows are up for re-evaluation. AD is unique in that emotionally it affects others more than the afflicted and if you are the lead carer you have to make difficult decisions. It is the whole families future that must be taken into account and that is harder than just caring.

    Sorry that I don't have any answers, it is difficult enough to understand the questions!


  11. mel

    mel Registered User

    Apr 30, 2006
    hi Dick
    Yes, I understand what you're saying....I have to put my family first.However,we've had a much better day today and hopefully there will be more to come....I will remain positive in this!!!!
    Thanks for the hug!!!
  12. jarnee

    jarnee Registered User

    Mar 18, 2006
    I agree with Dick,

    All promises must be up for re-evaluation. You have to do what's right for ALL your family.....your mum wouldn't want it any other way !!!

    Find the right home and your mum will be safe and well cared for. You can continue to bring up your family ( which she would want you to do, I'm sure) and when you visit you can enjoy time together...maybe even take her out or have her over to your house for tea, if she's up for it.

    The range of emotions is unbelieveable..I don't think you can even imagine it unless you've been there yourself... and you are right about it being a period of readjustment, too....a MASSIVE one. So, don't be so hard on yourself. Take advice, but do what you believe is right for you all.

    Good luck

  13. sophia

    sophia Registered User

    Apr 20, 2006
    entitled to have help coming in

    Hi Mel and welcome. I am quite new too and have found the other Talking Point (TP) members advice brilliant. I was just thinking that you sound a bit like me. our situations are different but my Mum has AD and was diagnosed last year, at which point I (and my husband - our kids are grown up) moved back to be near her and are about to buy a house with an annexe for her round the corner from where she lives now. I too feel I must give it a go! I agree that any previous promises shouldn't be held against you! AD and dementia is a particular disease that cancels that out as already said by someone else! I am a social worker and have met people racked with guilt and very tired indeed, due to promises of this nature! However it may be that Mum will settle, she is readjusting to a new environment of course and can't express herself in the usual ways, so has to use behaviour instead. I'm sure you realise that esp with the tantrum! Sounds tough esp as your children saw that. But what I was going to say was, do ask your GP to refer you to Social Services so your mum can be assessed for a care package. That would help take off some of the pressure for you. (I think someone has mentioned incontinence nurse assessment too, ask at GPs for that too) My mum has help coming in three times a day to remind her to eat drink and have meals, and help to prepare them. If you are in this for the long haul, you definitely have to pace yourself. And my own experience is that mum resents me doing too much directly for her. (She resents having help at all as in her mind she is independent. ) My mum has meals on wheels three times a week too as she can't cook for herself anymore. You must be doing so much already with the extra chores and just being on hand 24hrs a day, why not get help to do the personal tasks for her? You are also entitled to a carer's assessment in your own right and Social Services will assess you separately. You can also have regular breaks with services put in especially to relieve you from your role as a carer periodically. That can include extra help coming into the home. It doesn't have to be your Mum going into a Home for respite. Please do make sure you get some help Mel. It really does help, and may stop your Mum being quite so difficult with you too if it's not always you directly in the firing line! There is often a sitting service to let you go out without worrying. Social Services and local AD support group that you mentioned having contact with already in Sheffield should know about such things. Day Hospital ( often for assessment and run by Health) or / and Day Care ( usually run by or for social services, sometimes a voluntary organisation runs it ) may also be possible, and that gives you a break too. And lunch clubs are usually available with transport to and fro. It does sound like you need a proper diagnosis asap as this often the gateway to more services. Oh and benefits - you can claim carer's allowance and your mum can claim Attendance allowance. Sometimes Social services help with this or the local CAB can help, or sometimes benefits advisers attached to GP. I know that's tons of info, and I haven't ouched on the emotional side. Just let rip anytime on here. That's what we do! x
  14. Margarita

    Margarita Registered User

    Feb 17, 2006
    #14 Margarita, May 4, 2006
    Last edited: May 4, 2006
    Gosh Sophie what good advice.

    Sorry must be PMS, because reading Mel first post was like mirroring my life, when my dad died & I took over mum care.

    Feel tearful because what mel was saying my mum was doing & I did not know it was AZ , life was like hell on earth at that time & I made some mistake , but sophie advice Is what I got only a year ago .(but new about medication after mum was told she had AD 1 year after dad died )

    With the right medication Mel & right support things can get better it did for me & you learn to recognize your emotion & what they can do to you ,.in the long team so flow with them But don’t let them consume you :) yes be positive
  15. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Hi Mel! As far back as I can remember my parents both insisted they never wanted to 'end up' (their words) in a home. I do empathise with that worry of not being able to fulfil a promise, express or implied. (Currently supporting mum living independently in her own home)

    When I think of those words now, I am sure they were not said in order for me to be put under pressure by them to care for them 24/7 when the need arose.... in fact, I think most parents would be horrified to think they had placed that kind of burden on their children. I rather think they just wanted to live out their years and slip quietly away 'without causing any fuss'.....

    This thread has made me wonder about something I haven't so far...

    When and if we (as carers) reach the point of deciding that a home is necessary or best, has the sufferer's perception of what a 'home' is not radically changed?
    Indeed, if many sufferers seem to want 'to go home' when they are still living in their own, is it that their 'physical' surroundings are no longer apparent, or essentially 'meaningless' to them? Isn't emotional support far more important - even from a distance?

    Mel, on another note, I trust your 11-year old has recovered. My son (also 11) was really upset by 'grandma' just the other week - it took a few days before he wanted to visit her again - now he's back in the flow of helping out - including helping her to finish her sentences and guessing which word she REALLY meant to use.:) They are much more resilient than us, methinks! And yes, they can often find the humour we need to help us through....

    Best wishes, Karen (TF)
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    It is true then when they say when you see one AZ person you only seem one,

    because my mother knows that home is with & my children & she had AZ for 3/4 years now , I find that so strange when I read other people story of how there love says they want to go home & they our at home or in a care home & the carer not sure which home they mean .

    Maybe one day that will happen to my mother , but shall keep in mind the saying

    when you see one AZ person you only seem one .

    Also at mum care home a new person came to live there he keep wanting to go home & trying to get out , the nurse told me he has his freedom pass in his pocket & he some how managed to get out of the care home & his daughter found him at his home :eek: :)
  17. Margarita

    Margarita Registered User

    Feb 17, 2006

    Must add that when mum was not on medication, she did get confused where home was when she frist lived with me , 3 years on she still knows home is with me , I I think Bruce said ? that they can stay at a stage for a long time ,this must be what is happening with my mother
  18. mel

    mel Registered User

    Apr 30, 2006
    once again thanks to everyone...tp seems to be a good place to be!!! You all give me strength and the advice you give me is great....I've registered mum with my GP and I'm taking her along there tomorrow to discuss her medication and to get a referral to the cpn here.....
    We had a couple of good days this week but it all went pear shaped again at tea time and she told me I must be living in cloud cuckoo land if I thought I was her daughter!:confused:
    My youngest has recovered,thanks.....he was just shocked......mum attempted to have another tantrum tonight and James just shrugged it off!!!

    The scan that we've been offered in the past.........Does anyone have advice on that....we know mum has dementia but is it absolutely vital to know which type....I know mum had a mild stroke years ago...and I don't want to put her through any more suffering and I think she would suffer and panic if she had to have a scan....I feel guilty if she does and guilty if she doesn't.
  19. Áine

    Áine Registered User

    My dad had a scan earlier this year. I thought it was going to be the scary thing where you have to lie down and go into tunnel and lie there for ages while it scans you. But the thing he went into was just like a big polo mint rather than a tunnel, nothing enclosing or scary. He was in and out within a few minutes, the most stressful thing was finding the taxi home afterwards :). That's at Sheffield Northern General. Scan was able to show up that he had some vascular dementia and evidence of small strokes, but also that he had some Lewy Body sort of deposits.
  20. mel

    mel Registered User

    Apr 30, 2006
    thanks Aine....if its offered again I'll take it up

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