1. Moorcroft

    Moorcroft Registered User

    Nov 4, 2015
    70
    I joined this forum a few days ago, and I've been reading other people's posts. I'm really amazed by the level of (unpaid) care people are willing to offer their relatives.

    I actually find it a bit scary, because I honestly don't think that I can, or that I want to, offer my mother the same level of care.

    The situation is that mum is nearly ninety. We are currently trying to sell her house so that she can come and live in a bungalow near me. My brother, who is also moving, will be about an hour and a half away by car. I have a husband, but no children, and my brother has no children either. We are both early retired (but my husband is still working).

    Mum is in the early stages of dementia, and is currently being tested. The provisional diagnosis by her GP is vascular dementia, rather than Alzheimer's but she hasn't had a brain scan yet.

    My dad died ten years ago. He had Parkinson's disease for several years before he died and during that time I spent many weeks helping mum with his care. After his death, I spent several weeks with her, getting her back on her feet again. Then a year later I moved abroad for several year, because of my husband's work. I promised mum that I'd visit her at least once a year, and I kept that promise, once staying five months to nurse her through shingles.

    I returned to the UK a year ago. She'd had a fall in the spring and been showing signs of dementia since then. I've spent about two months out of the last year staying with her, sorting out various problems, only to have it all fall apart once I've left. My feeling is that if she is near me it will be easier.

    We got an assessment by Social Services a few months ago, but at that point their assessment was just that she needed a carer 20 mins a day, which was frankly a joke. But, I'm hoping that when we get a proper diagnosis she will be assessed with a higher level of care needs.

    She is self-funding because of her level of savings, but I don't want to put a care package in place that social services won't fund when she runs out of money. A residential home doesn't seem appropriate just yet, except for respite care. She did stay in one near me for a week, but didn't like it much.

    The thing is that although I've devoted a lot of time to her care over the last decade, I really don't want it to become a full-time job. We are not an affectionate family. Neither of my parents ever hugged me or praised me or offered me any affection when I was a child. My mother often says quite unpleasant things to me and about me, and has always done so; it has nothing to do with her dementia. She also slanders me to the neighbours, but fortunately she has a reputation for saying the most appalling things about other people, so no-one takes any notice.

    I used to make a joke years ago about how if mum got dementia, how would we tell? But that seems like a sick joke now. She has always had a strong irrational and manipulative streak and that is still there along side the memory loss. For example, she eats a chocolate bar, waits half an hour, then takes a sugar reading for her diabetes. It is inevitably high, so she rings the doctor or rings for an ambulance because she is having a 'diabetic crisis'. That isn't the dementia; she's been doing it whenever she wants attention for the last 25 years. On no occasion has the reading actually been so high that it counts as a real crisis, but she keeps doing it despite the fact that the doctor just tells her to go for a walk.

    On the other hand, I don't want her to suffer, and I feel strongly that I have a duty to care for her. Once she is living near me my plan is to get a carer at least twice a day, or more if that is the assessment. We'll also get a gardener and a cleaner as she has now. I'll accompany her on visits to the doctor, get her shopping for her,and pop in two or three times a week to see she is OK. I'll try to take her out once or twice a week to go to a cafe or something like that.

    Obviously the level of care will have to increase as her condition progresses, but I really don't think my sanity would survive spending 40 hours or more a week with her.
     
  2. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Hello Moorcroft and welcome to TP :)

    First of all, could I say I think you are doing an excellent job of looking after your mum, in the light of her attitudes and history :) And here you are, proposing to do more as time goes on...

    Please don't run yourself down by comparing yourself to others. I've done a bit of that myself, and it gets you nowhere! We can each only do what we are able to do, no more and no less. And if you drove yourself into the ground helping your mum, it wouldn't in the end help her, you, your husband or anyone else.

    Dementia is part of the situation we are all in, but only part of it. Everyone is different. So do your best, but keep your sanity! :)

    Looking forward to reading your posts

    Lindy xx
     
  3. balloo

    balloo Registered User

    Sep 21, 2013
    227
    northamptonshire
    i spend 24/7 with my MIL as she now lives with us . i have gone to working PT from home and am willing to give up completely if i have to .My MIl was diagnosed 3 years ago and is no way safe to be on her own and cannot even do personal care now. if you think a carer 4 times a day will work i dont think so. i am felxible if she want tea early and go to bed i can do that paid carers are not that flexible. MIL would be self funded and i dont see why she should pay what the governemt should just because she worked all her life and saved as well as her husband who passed away 18 yrs ago . i know not every can or are willing to carer for parents . we decided if parents needed carering for either my mum or his we would do it.
     
  4. Moorcroft

    Moorcroft Registered User

    Nov 4, 2015
    70
    Actually, I don't care if all mum's money goes on her care. I'd consider it money well spent. Obviously, it would be nice to inherit it, but you can't miss what you've never had. Mum is always messing around changing her will. After I'd stayed with her for five months nursing her through shingles, she changed her will to leave more to my brother than me. It's difficult to explain why she does something like that because I'm not sure myself. I've got used to her doing hurtful things over the years, and I don't let it worry me. I certainly don't want her money.

    I think that if she got to the point that she needed a higher level of care than can be provided by carers coming in, then a residential home would be the best thing. She'd get better care at a home than I could give her. I've calculated that her cash would last about 5 years, maybe 3 if she needed nursing care. Since she is nearly ninety, that would probably be enough, but I'd prefer it if first there was a social services assessment saying she did need residential care, because it would be horrible to run out of money and find the local authority would not take over.
     
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    Hi there
    You seem to have it very well worked out and really it is about whatever works best for you. My Ma was horribly manipulative but I really loved her even tho sometimes before and after the memory loss kicked in she was really horrible to me. I just didn't want anyone else to care for her and she didn't want to be cared for by anyone else either. I don't think you can care effectively for a family member without quite a deep love. It would be too much for you and unhappy for her . Seems to me you are very realistic about what you can and can't do and you have worked it out. It doesn't matter about what others do, only about what is best for you and for your Mum.

    Social services would kick in when her savings get below about 23K. It is worth looking around at care homes and the other option in some areas is flexi care or extra care housing - local authority run but there is a case for someone who owns their own home to live in this type of housing because it is and should be needs led. You pay the full cost unsubsidised but it is much much cheaper than a care home. The care team is on site and you buy into the package - worth investigating as it means people have their own small flat which suits those who crave independence. While you are living closeby and caring it is worth applying for attendance allowance which is non means tested (do get some help with the form and make sure you are filling it out as though it is her very worst day and remember it is not about the care you are getting it is about the care you need in an ideal world) and a carers assessment which will give you some free respite care. At least that way the money will eek out a bit longer.

    take care and let us know if we can help.
     
  6. Moorcroft

    Moorcroft Registered User

    Nov 4, 2015
    70
    I've looked into what is available in my area. Unfortunately, I live in a very rural part of the country and there isn't much near me. The nearest care home is about 15 miles away. The nearest sheltered housing is much further. That's one reason for choosing the option of a bungalow in my nearest village. We are also going to have to pay more for carers because of the travelling time.

    Thanks to everybody for your replies.
     
  7. Clairseybelle

    Clairseybelle Registered User

    Nov 8, 2015
    1
    My mum

    I have just joined the forum today after seeing your post about your mum and your situation. I can't believe the similarities between us and our situation.
    My mum was diagnosed with Alzheimer's two years ago at 65, and two months ago my dad died suddenly. He was her carer, and as she is unable to live alone, for various reasons, including financial, myself and my brother decided she should come and live with me and my family.Overnight my life as I knew it has gone, and I am obviously grieving for my father. We are selling her house, and when she receives care elsewhere she will self fund.
    I am nearly 45, and I have 4 children and have very quickly realised that I can not, and will not provide the care I thought I could, because I must put my family before her.
    I hadn't realised before she came the burden and extent of the impact it had been having on my dad, and we feel it contributed massively, if not entirely to his death.
    I am in exactly the same position with her behaviour throughout my life, with her total lack of motherly behaviour towards me, even when my youngest son was diagnosed with leukaemia, she tried to gain attention by asking me not to burden her with my worries and telling me she had a kidney complaint! Which I might add wasn't true.I have found out over the last few years she lied to my dad twenty years ago, telling him she had been diagnosed with MS, and I know strongly suspect she lied about being sexually abused. As her Alzeimers has progressed, her whole being revolves arround her list of diseases and allergies, none of which exist.
    I am not bitter, I am a good person, and I am caring for her as best as I can, and I am at peace with the thought that I believe she was ill long before we ever realised, and she was unable to control her behaviour, it wasn't the real her..she was a good loving mum when we were little and despite the story, I do love her.
    I mainly struggle with her hypochondria to be honest, because it is completely manipulative, and attention seeking, and not to mention hilariously over acted at times.I also struggle with the worry that I will overlook something 'real' .
    Please do not feel guilty, and do not sacrifice yourself for someone who wouldn't have done half what you have done.
     
  8. Jamaicaj

    Jamaicaj Registered User

    Feb 4, 2015
    6
    Mums!

    Hi Everyone
    This post made me actually log in to participate too! Here goes! :eek:
    My Mother (undiagnosed......there is nothing wrong with her) has always been spiteful to me & my brothers. Now, what we feel is some form of dementia has only served to worsen the situation. She too wallows in self pity inventing the most pathetic symptoms and hysteria over the slightest ailment! Her manipulative ways sometimes make us feel she really can't be suffering with anything, she seems far too clever in getting what she wants..........which is mainly her own way and loads of attention!
    I suffer from Lupus, fibromyalgia, osteoporosis & various other auto immune complaints and spent the whole of last week in bed with not an ounce of energy. I was too unwell to attend a family birthday party on Friday and instead of my Mother ringing to ask if I was in fact any better or indeed well enough to go, I received a call demanding if I was going or not! No......how are you ? No...........are you feeling better? All I got was insults and "pull yourself together" rants! Despite a whole host of various medications/injections the only answer when flaring is rest and to avoid stress! Not so easy in this situation!
    I have to admit sitting quite stunned looking at the phone in disbelief, wondering if I expected too much for "my mum" to actually care how I was!
    The fallout from this latest episode is my husband taking the inevitable & predictable call from her on Sunday, (like nothing has even happened) and telling her bluntly what he thinks of her, which isn't a lot and her failings as a mother!
    Simply put....."if you ring my home and only want to be nasty I shall block your number. My wife has been ill and I refuse to sit by and allow you to abuse her"

    So I fully understand the torment involved when the parent who has been so nasty and uncaring eventually comes to depend on those they have abused one way or the other!
    I do think that we become accustomed to the way we are treated and regard it as normal, when in fact it is far from normal!
    I don't know where my/our particular path will lead but I know I will never be able to be a full time carer for my Mother. Hats off to those that can.............those that have had warm, caring loving relationships must feel a huge loss as dementia takes away a piece of that person bit by painful bit.
    As has already been said, we are all different and no way is necessarily the right way!
    There are so many unknowns on this journey of dementia, the only certainty is that it is difficult for all involved.
    Be confident enough to trust that what feels right for you is the right thing to do!
    Sending you all (((((hugs)))))
     

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