Leaving ALZ Partner Alone

Discussion in 'Middle - later stages of dementia' started by kobils, Aug 16, 2015.

  1. kobils

    kobils Registered User

    Aug 15, 2015
    3
    Hi!

    I'm new here. I live abroad and my father, who lives in England, has mid-adv stage ALZ. He has incontinence issues, his memory lapses are pretty severe, and he is not very mobile. He is generally happy in himself. He is not and never has been prone to wandering. He lives with my mother who is his primary carer. She is 15 years younger than him, now aged 70. My mother gets carer support 4-5 days a week at about 5 hours each time. She receives a carer's allowance.

    My sister, who lives about 6 miles away, thinks my mother is irresponsible leaving him at home alone sometimes in the evening and wants me to tell her the same. She thinks she is putting him at risk and that she should stay home all the time or put him in a home.

    Background: In the evening my mother sometimes goes out leaving him alone (2-3 times a week). Generally she goes to the neighbour's house or down the street to a friend's house, so she is never far away. But she may go out for a 3 hour stretch. When she goes out, she usually leaves a baby monitor with the next door neighbours, and they will go in and check on him if they hear anything. Recently he had a fall while my mother was out, but the neighbours heard him and took care of it. He wasn't hurt.

    I received a bit of a ranting message from my sister asking me to tell mum she shouldn't be doing this. She says Mum doesn't listen to her and she needs my support. What do people think? Is my mother putting him at risk? Should I encourage my mother to put Dad in a home? Will my mother be found guilty of neglect if my father falls and hurts himself/dies while she is out as my sister suggests? Before I speak to my mother or my sister next, I'm wondering what the perception is about leaving him alone at night with the precautions she has in place.

    Thanks for any help. It's difficult to interfere with anything living abroad and being removed and unable to help practically. i am wondering if I should schedule a week home again despite finances (we have to travel as a family of 4 next year for a wedding).
     
  2. Jessbow

    Jessbow Registered User

    I think your sister needs to remember that your mother has a right to a life. Her going out doesn't sound unreasonable, and she is taking steps to ensure he is okay.

    You need to support what you think is right, not what your sister thinks.

    What do you think about the situation?
     
  3. jeany123

    jeany123 Registered User

    Mar 24, 2012
    19,036
    Durham
    Perhaps your sister could sit with him if your mum is out or take him to her house, your mum needs time to herself and would not leave him if she thought he wasn't safe to be left, the steps she is taking sound very sensible,
     
  4. meme

    meme Registered User

    Aug 29, 2011
    1,953
    Female
    London
    your mother seems to be doing a good job...she needs her time and deserves it..a balance is always best, there is always risk in life no matter what we do.
     
  5. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,949
    Your sister has two choices, either she helps your mum out and sits with your dad or she accepts what your mother is doing.
    She may be feeling jealous and angry that you are not around and have "escaped" the responsibility - these are not my feelings about you, please note! so I would try to be very diplomatic and do a visit as you suggested yourself because it sounds as if things are rather tense and need face to face rather than over the phone decisions.
     
  6. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,562
    Female
    England
    Hello and welcome to Talking Point.

    Your Mother is more than entitled to her respite from caring and it is the break that is probably keeping her going, it is far from an easy job caring for someone with dementia.

    She has put things in place but I think it is really not the best thing to do to put the responsibility onto neighbours. I know I would find it difficult to be listening out 2-3 nights a week and would not be very settled whilst doing it. There are all those what ifs.

    Your Father might not be a wanderer but it does happen because of the dementia, there are so many things that can go wrong. Could your Mother find someone who would sit with your Father whilst she is out? Then the neighbours would get their evenings back, your Father would have company and your Sister could stop bending your ear.

    It is not easy, not one part of caring is easy and unfortunately it gets harder as the disease progresses, both for the cared for and the carer.
     
  7. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,289
    SW London
    If your sister isn't happy about it, let her come and sit with your father while your mother goes out.

    However it's often the case that those who love to criticise are 'too busy' to do any hands-on care themselves.
     
  8. kobils

    kobils Registered User

    Aug 15, 2015
    3
    Thank you for comments so far

    Hi

    It's good to get feedback. I didn't want to say what I thought because I didn't want to prejudice replies. I tend to think what my mother is doing is OK as most people have suggested. The relationship with the neighbours is very close. If my mother is out 2 or 3 times a week, then at least 1 or 2 will be at that neighbour's house. So she'd be the one doing the listening and checking. The other time she's just down the road at another neighbour's. She or the closest neighbour's will pop in at least once. She does sometimes ask another neighbour to sit with him, but she can't really pay for someone.

    The chances of my Dad wandering are close to nil. He is not very mobile and he is afraid to go out. Of course there are all kinds of things that could happen, but it has been 2 years since he last made any food or drinks for himself and now he is incontinent he mostly stays in his chair. Of course he could get frightened or something but he is mostly sleeping. Something could happen but...

    My sister does sometimes get annoyed at me for being away but it's not the primary annoyance. She has always been pro put Dad in a home. She has often had an uneasy relationship with my mother and she can be over-dramatic. I have a great relationship with her in general, but have to tread carefully when disagreeing. My feeling too is if she doesn't like it, she could sit with him, but I can't say that since I'm not in a position to sit with him at all!

    I'll call my Mum tonight and ask her how things are going, and sound out what is happening. I can also ask the neighbours. I have to be more careful when talking to my sister...

    Thanks again. If anyone else has any suggestions, I'd be pleased to hear.
     
  9. Tin

    Tin Registered User

    May 18, 2014
    4,815
    UK
    Your mother does seem to get a lot of care/respite during the day, is there any chance some of these hours can be transferred to just one of the evenings, or are her visits to neighbours just last minute things? You are in a difficult situation and I can understand your sister's concern. Truth is your father would have probably fallen even if someone was with him and thankfully the neighbours were there to help, but there are other safety issues and anticipating all is difficult, my mum now lives with me and its usually a case of something happening and then I put things in place in case it happens again. How do the caring neighbours feel about this responsibility? is it possible they are being paid a small amount to do this? Legally, I think there is only a problem in case of fire, but not sure about that. Sounds like your parents are getting lots of support and your mother seems to have got the right balance at the moment.
     
  10. Beate

    Beate Registered User

    May 21, 2014
    11,748
    Female
    London
    I don't know where your parents live but in my borough, sitting service is free once agreed upon. I do not think your mother is doing anything wrong but it might not hurt to have someone official sit with him. It might appease your sister and your dad might get enjoyment out of it. Plus your mother will know for sure he is in safe hands, just in case a fire breaks out, he falls ill or has another tumble. Get another assessment from social services. Your mother is entitled to it. She seems to be doing a good job but she also has the right to her own life.
     
  11. kobils

    kobils Registered User

    Aug 15, 2015
    3
    Hi

    I spoke to Mum tonight. She now gets 2 or 3 hours care every day but night time costs more so she would only be able to get about half the hours if she changed them. As she needs help getting Dad up and showered and dressed (he's large, she's not) it's hard to cut those hours. The hours are actually getting reduced at the moment.

    Dad fell on a tiny step between the kitchen and the sitting room. Mum has had services out for a reassessment and yes, he probably would have fallen anyway; the Council are putting a ramp in to help him in future and some rails. It's good to hear that in some ways being reactive is necessary, Tin.

    Neighbours are really fine about helping out - I talked to them tonight too. They are 20 years younger than my mother and feel like family. My parents have looked after their dogs and walked them for about 20 years while they were at work or on holiday, and the whole village is a bit like that, so she is in a good situation. The neighbours would not want paying! It would be odd.

    My mother feels that my sister is over-reacting and always pessimistic. i know she is worried but I agree with Mum to an extent. I think Dad's in a better situation than if he were in a home. When he was less advanced he used to go to a day centre twice a week and he absolutely hated it. He still remembers who Mum is most of the time (though sometimes he calls her his sisters' names or his mother) and mum is coping quite well. I can't really afford to pay for a sitter which would be the only other option... I'm not about to tell her off for what she is doing. I think i just need to break the news to my sister.

    Thank you so much for all the replies. It's good to talk it through with everyone.
     
  12. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    4,995
    UK
    Hi

    I spoke to Mum tonight. She now gets 2 or 3 hours care every day but night time costs more so she would only be able to get about half the hours if she changed them. As she needs help getting Dad up and showered and dressed (he's large, she's not) it's hard to cut those hours. The hours are actually getting reduced at the moment.


    Wow. Your Mum is really lucky to get that much time. 4 x 15 minutes is the norm in most places if the person lives alone.

    If your Dad is going to funded by the local authority when he goes into full time care then the LA will do anything to keep him at home. Perhaps your sister doesn't realise this
     

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