1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. sandy25

    sandy25 Registered User

    Nov 30, 2005
    54
    Aaagh. Just typed all this out once but my log-in ran out so I've had to start again!

    Anyway, my Dad is 64 and was diagnosed with vascular dementia 4 years ago.
    I have a brother. My mum is his carer and they live at home. He goes to a care home twice a week.
    Recently, he's started struggling getting dressed in the morning, writing, and social skills are diminishing fast so mum gets v.embarrassed when she takes him out. He can't do any jobs around the house anymore so he pretty much just sits in front of the tv all day.
    Mum is in her 50's and is really struggling with caring, and the prospect of caring until she reaches old age. She no longer sees Dad as her husband, just someone she looks after. Me and my brother have tried to support her as much as we can but its not doing much good. The subject of a permanent care home has now arisen.
    I'm not happy about this at all.
    I'm sorry, but if I worked all my life and then when I got ill at 60 my family put me in a home I'd be absolutely gutted. I'd be crushed to see him in a home now becuase I know he would wonder why on earth he can't just keep living with mum. And I would feel like I'd abandoned him. But what say do I have? As me and my brother can't give up work to care for him.
    I feel like the family is on the verge of a meltdown and I'm desparately trying to keep him at home as long as possible. Does anyone have any views on the affect that going from a family home to a care home would have on the illness? I.e woudl it make him get worse quicker? Could I use his MMSE score as a debator? i.e lets wait until he gets to x score then consider it. Also, at what sort of stage would people be normally expected to go into a home? (i.e scores of 15-20 or 10-15). I know I'm tring to make it black and white, and I understand it all comes down to the carer at the end of the day but I'm his daughter so must have some say. I'm afraid that if I resist too much she'll just give up and leave him - then where would we be?
    I'll tell you what though, these forums are amazing therapy. Just to see that your not the only one dealing with this.
    Any views would be welcome.
    xx:( :(
     
  2. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hi sandy

    like yourself i have a brother but its my mum who has demntia and dad is the carer, i was wondering does your mum have any help from social services my dad has a nightsitter once a week also someone in to help with dressing in morning and getting ready for bed were hoping to get a care package soon as she hasnt been out of hospital long (though she's back for a few days now)

    perhaps your mum can put in for respite for a week for her to have a holiday? if youve a CPN he/she should be able to arrange something perhaps your poor mum just needs a break it is so so hard trying to cope on your own ive seen my dad try and fail.

    Im sure if there were other alternatives there for you mum she would try those first as i know with my family a carehome will be the last resort but other peoples circumstances are different and i cant speak for them,

    theres probably someone on this site in exactly the same position as you so im sure you'l get your answer
    best wishes to you and you family
     
  3. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Sandy,
    I know my dad hit a patch in caring for mum when he didn't know if he could cope, in the end I said "Choose, if you want to walk away, do so, I won't stop loving you, I will sort things out for mum, if not lets get on with it." Fortunately he made the decision to stick it out, if not mum would have been in a Nursing Home much sooner.
    Your mum needs your support; she is going through an horrendous adjustment. You have said that your dad struggles, is he violent towards your mum? I think you need to sit down with your mum and listen to her feelings and her needs. There are ways of getting support into the home, there is respite care, but if your mum does not feel that she is able to cope with looking after your dad at home, then it would be better for him to be cared for in a Care Home. Maybe not a decision that you would like, but dementia takes us all places that we do not want to go. If your dad was in a Care home you would all be able to visit knowing that someone else was responsible for the day to day care - they are homes not prisons, you could still take dad out and do those things that you do with him now.
    Remember, both your parents are suffering from the dementia, they both need your support, love and understanding.
    Amy
     
  4. sandy25

    sandy25 Registered User

    Nov 30, 2005
    54
    I should have clarified how much help she gets. He goes to a care place all day twice a week. Every few months he stays there for a whole weekend and the problem is that she asks us not to ring or see him while he's there in case he gets upset.

    We've agreed that he should go there for a week this year so she can go away but I really want to be able to ring or pop in just to check he's ok, but I know that'll go down like a lead balloon.

    He's not violent towards her, in fact the complete opposite, he dotes on her and he doesn't realise her change in feelings towards him.
     
  5. flossie

    flossie Registered User

    Apr 4, 2006
    5
    Hi Sandy25

    My mum is in a nursing home and has been for 6 years, diagnosed 10 years in total. I wish we could have done more to support my dad, but sadly he did not always support the help we brought in. Having experienced an EMI home and a nursing home, I think we all wish that mum could have stayed at home longer, it certainly doesn't get easier once your loved one is being cared for in a home, if anything it can be quite hard, dealing with your feelings and it can be difficult to get the right place. That said, your mum needs your support as much as your dad does, get in as much help as possible. I do think that with every change of environment your dad experiences will cause him greater confusion. Thinking of you, and understanding all you go through. Flossie
     
  6. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hi sandy,

    i was wondering if perhaps you or your brother couldnt take a week off work to look after your dad, while your mum gets some rest, that way you could spend time with your dad and perhaps get some idea of how your your mum is trying to cope, im sure your mum loves your dad, but in the same way my mum will never be the mum who raised me and idolised my children, your mum is losing the man she married,
    I know i had one day with my mum and i have nothing but the greatest respect for my dad in what he has to cope with everyday.

    hope you manage to sort things out
    best wishes
     
  7. sandy25

    sandy25 Registered User

    Nov 30, 2005
    54
    You're right donna I should take a week off to look after him, thats the sad thing. But I don't get much leave as it is and I know this is a really selfish thing to say, but it would mean I wouldn't get to spend the time with my partner (we live quite far apart) so we'd have to forsake our holiday.
    That makes me feel like a terrible person so I asked my brother if he'd be willing to share the week with me, but his leave works different to mine and won't have enough left to do it.:eek:
    I also find it hard because of the relationship I have with Dad as the youngest child and also daughter, I'm dreading the day that I have to get him dressed in the morning coz I'd know that he would definately feel his dignity is gone, it would be v.hard for both of us. I am getting better as I'm spending more and more time with him, but at the moment, a whole week seems too much to deal with (and yes I appreciate 24/7 is a lot to ask mum to do aswell - completely hypocritical!)
    I think flossie is right, I think going into a home will have detrimental effect on him so I'm going to do my best to try and keep him at home with mum for as long as poss - its the only thing I feel I can do for him.
    Dealing with feelings as well that you'd never normally have to deal with, I think these experiences just multiply every emotion in the family, in a bad way. I used to feel sorry for myself been as i'm going through this in my 20's but its comforting knowing I'm not the only one.
    Thanks
     
  8. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hi again sandy25

    Untill i found this forum i thought i was the only one going through this:eek:
    it is hard to deal with whatever age you are, im in my 40's now with a son who's 22 and i know i'd hate him to have to cope with this.
    i know what you mean about getting dad dressed/toilet and so on my mum was a very private person that way i dont think i ever seen her in a bra before she got ill so i find it very strange that she feels quite at home now stripping off in front of me.

    ive just had to leave her in the EMI unit at the local hospital she's the youngest there as she's only 65 and my heart breaks becouse she looks so sad and starts to cry that she just wants to come home, hopefully she can come home next week but for how long we dont know.

    like all the other posts have said try and get as much help as possible for your mum there is help out there if you ask for it, like homehelps, nightsitters, people to come in and tend to your dad, im sure if your mum had more help she would rather have your dad at home

    good luck i hope you find the solution that will keep everyone happy
     
  9. susieb

    susieb Registered User

    Apr 16, 2006
    26
    Can someone tell me what EMI is - I haven't heard of this before.
     
  10. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    EMI = Elderly Mentally Infirm

    I think it's no longer considered a politically correct term but I'm not sure what the latest terminology is!
     

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