Severe Family Tensions - Common?

Discussion in 'I care for a person with dementia' started by GBFast, Dec 10, 2015.

  1. GBFast

    GBFast Registered User

    Jul 13, 2015
    10
    To cut a long story short, my mother was diagnosed (with moderate dementia)since 2013 and been in a nursing home since 2015 when it was diagnosed severe. She could have been admitted to a mixed mild/moderate dementia facility in June 2015, but my sister persuaded my Dad to keep Mum at home (Dad is 77, so it wasn't my sister who would be looking after Mum, though she said she would help "a bit more"), but in the intervening period, a letter of severe dementia arrived and the nursing home could no longer accept her.

    My sister's over-commitment lasted for less than a week, then it was left to me to ring-around and drive-around to find somewhere that could take Mum. My sister had basically washed her hands of the situation.

    Unfortunately, we heard two weeks ago that the home she is in is closing no later than February.

    My sister has the idea that she would take her into her house, but this could take months and would involve at least one more change of home meantime.

    I spoke to the resident nursing home nurse on Tuesday of this week about the situations. Relatives are naturally concerned, especially with the Christmas/New Year lull and then February so close after that. Five residents have been moved to other homes this week alone.

    I asked the nurse about advice, first about my sister's idea, and then what we should no next.

    I should say:my sister attends an education course twice a week, her grown-up daughter goes to university some distance away twice a week, her son works almost full-time, my sister has a boyfriend who does not live locally, and my sister likes generally to get out-and-about. They also have two active dogs.

    The nurse shook her head at virtually everything, especially the fact that someone with severe dimentia needs to be in a place with (almost) constant supervision, including overnight; a doctor on call; basically an end to social (and education) lives; falls; and the dogs.

    The nurse then gave me and my Dad a list of local nursing homes for dementia sufferers, and said we should visit them as soon as possible because other relatives were.

    My sister's daughter got-wind of this and accused me if not diving a damn about Mum and "how dare I put my Mum's name down for place (we hadn't done)> I told her she didn't know what she was talking about , but was her mother a qualified nurse and were they all prepared to give-up their social lives? No response.

    Then my sister joined in, said Dad and I were going behind her back (we were trying to help) and that she will never forgive the pair of us, especially me for some of the texts. (I admit I did get very frustrated at her naivety/stupidity.) She now says I'm not her brother any more and has turned my niece and nephew against me- blocked phoned numbers, deleted Facebook friends, refusing to take to me, that sort of thing. (She'll continue to talk to Dd because it's near Christmas, and she likes to get the money presents from him at Christmas time, whereas she knows she can forget about anything like that from me.)

    So, I am the 'big-bad woolf' for trying to help, whereas my manipulative sister clearly feels like she's on on some sort of power-trip.

    Meanwhile, my Dad agrees with me, but doesn't want to fall out with his daughter.

    Does any of this sound familiar to other posters. I'd be interested to hear stories.

    Many thanks.

    Gavin.
     
  2. middlemiss

    middlemiss Registered User

    Apr 27, 2014
    24
    Hi Gavin, firstly I'd like to reassure you that you are not the first (or last) family to have the kind of problems you have described. Secondly, good for you for sticking to your guns!
    I work in adult social care and thought I knew it all, until dementia hit my family and after more than 50 years of being in a close loving family, we too are at loggerheads and despite all my training and experience, the situation is well past redemption.
    I would definitely involve you, your dad and sister in any discussions, other family members are secondary in my opinion. Set up email rather than texts if you can, you'll have copies then. Also, remember to send relevant family members information. To help the process, AgeUK have advocates that can speak on behalf of your mum, sometimes the person with dementia's needs get overlooked in our family dynamics.
    Keep posting and let us know how you get on, any advice or good ideas from you might help others in a similar situation.
    Take care
     
  3. Rheme

    Rheme Registered User

    Nov 23, 2013
    159
    England
    Suggest you get the social workers involved as they will act in your mum's best interests and take the pressure off you.

    It is really difficult when families fall apart but stay strong and do the best for your mum and dad that you can.

    This is a really difficult situation but hang on in there and know that you can live with your decisions in doing your absolute best for your parents.
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,475
    Yorkshire
    Hi GBFast
    is this common? - in some form, yes sadly
    and it certainly split my family - in a very similar fashion
    for me, I work on the basis that if my dad is well taken care of, I'll deal with the rest some other time (and there is a lot of the rest, unfortunately) - if my mum were alive, I would do what she wanted unless by doing so she and dad would be at risk

    so to me, it is your dad's wishes that should be followed as far as possible - with his children as support; grandchildren have no say (my opinion)
    take the flack from your sibling at another time - what is important right now is to have your mother settled asap and for your father to have some peace of mind
    I'm sorry she sees you as going behind her back however you NEED to get done what needs to be done - as middlemiss suggests keep her informed, yes, but act now in your mother's best interests
    this seems to be her pattern - it's a shame but does give you the opportunity to get on with arrangements
    maybe family relationships can be salvaged in the future, maybe not - she's made her choice
    your priority is your mum; your focus is enabling your dad to do what is best for her

    apologies if this sounds harsh and abrupt - feel free to totally ignore it all
    after a lot of soul searching I've had to make some irrevocable decisions myself - I can only take responsibility for myself, I can't dictate another adult's reactions - my dad is the one I need to support and protect as he's the one no longer able to look out for himself

    written with much sympathy and very best wishes
     
  5. exhausted 2015

    exhausted 2015 Registered User

    Jul 5, 2015
    624
    Female
    stoke on trent
    #5 exhausted 2015, Dec 10, 2015
    Last edited: Dec 10, 2015
    Hi gavin I think that there are many of us with this kind of situation.. I had something similar to cut a long story very short earlier this year after my dad came out of hospital following an hip fracture my sil and niece paid us a rare visit at the time I was and still am exhausted.. But they started to voice there opinions about dad's care and that it should be a joint decision if dad were to go into a care home.. Bearing in mind that I have cared for him for 7 1/2 years and cleaned him up when he has soiled himself... Ect.. Anyway they had a tongue lashing from me and my oh.. We've not seen them for 6 months.. That's how much they care... Your not alone.. My best wishes exhausted 2015 xx
     
  6. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,282
    SW London
    From all I've ever heard, a lot of these tensions spring up when the care home question rears its head. Suddenly the invisibles, or rarely visibles, are popping up like meerkats, terribly concerned that the relative they hardly ever see might be going into some dreadful care home.
    Of course this concern has nothing whatever to do with a sudden realisation that their inheritance could be swallowed up in care home fees.
     
  7. exhausted 2015

    exhausted 2015 Registered User

    Jul 5, 2015
    624
    Female
    stoke on trent
    Very well put!! Witzend xx
     
  8. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    4,999
    UK
    #8 Onlyme, Dec 11, 2015
    Last edited: Dec 11, 2015
    Really? I got flatterned in the race to find the bank statements.


    Gavin, I would get the SS on board to give your sister a list of things needed to modify her house. I feel the raised toilet frame will go down nicely so she can co ordinate it with her bathroom decor or perhaps she can find a descrete nook for the commode in the sitting room. :D:D

    Tell her that she might be able to get respite for 10 nights a year, arrange to have a nice grab rail next to the loo, front door, step. Key safe outside her house for the carers to come in during the day as you assume she will be doing the 8pm -8 am shift.

    Invisible are a nightmare and need shooting
     
  9. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I would look at the homes and if you find one that you like I would put her name down. In fact I would shorten the list by finding out where the 5 that have already moved have gone as chances are they will have picked the best.

    I would do this as soon as possible - I cannot tell you how quickly the places at good homes go - they will be gone before you turn around.

    I would not share with the home that you chose the info about family tensions at this stage or naturally they might prefer a quiet life and offer it to someone else. I would then ask them to hold it (but my guess is that if you are very lucky you will only be able to hold it for the time that you have to give notice). Then I would inform family that she is moving 'temporarily' so that you can all sort out the rest of the details eg adaptations to the home etc etc with social services as a family at your leisure. Prioritise your mum and her well being, hold off the invisibles, reassure your dad that if this is not what he wants you can discuss it when your mum is settled but you must prioritise her well being and that she could end up in somewhere he doesn't want her to be if you don't move her now!! In other words hold them all off with 'good reasons' and sort out the rest.
    That would be my advice - or you will end up twisting yourself into knots

    Good luck xx
     
  10. Sunnysky

    Sunnysky Registered User

    Dec 11, 2015
    1
    Sorry to hear that you are going through this, and as you can see you are not alone.

    Although most people are posting have been in your shoes, I was in your sister's to some extent. My experience is different but with many similarities. My uncle had Down Syndrome, and had always lived at home with nan, down the road from both me and mum. Mum has other brothers and sisters, and I brothers, but they all live around the UK. My mum was the main carer for both of them, and I would step up when she went away etc. None of the other family ever helped out.

    When my nan passed, my uncle went to live with mum, and over the course of a few years his behaviour became increasinly worse- wondering in the middle of the night, becoming aggressive, verbally challenging, forgetting how to do basic tasks and so on. . I knew it was dementia. Mum knew it was dementia. The social worker (who had met him once) said 'its normal for Down Syndrome individuals to behave like this, it is not dementia....'

    I worked full time, 2 little ones plus 2 dogs, and I supported mum as much as possible. I would have my uncle with me on weekends, would have him for a few hours in the night so mum could have a break and so on.

    Then one day she dropped the bomb shell- she had put him in a home as she couldn't cope any longer, and social services were not giving any support. I became the daughter from hell!!

    I screamed, I cried, I called her every name under the sun! How dare she? He could have lived with me! I would have changed my job! and so the onslaught of verbals went. I then did not speak to her for almost a month.

    It was then I realised what she had done and why. Could I give up my job? not really. Could he live with me? I did not have a spare room. What about the children? There would be a risk of violence to my children. and so on. She did not want me to go through what she had:- losing her independence, having to be there all of the time, being on call 24/7. and she realised his behaviour was now unmanageable at home, and required 24/7 supervision.

    But why had I acted like that to her? Because I felt guilty. I felt guilty that I could not look after him, that I had let my grand parents down by allowing him to go into a home. But when I made that promise to both my grandparents many years ago, we did not know there was a high risk of dementia- which he was diagnosed with within a week of being in the care home- we did not know our gentle man would become aggressive, we did not know we would not be able to cope.

    So as I said although my situation is not the same, it has similarities. I can not say why your sister is behaving that way, but my behaviour was guilt, and I used my mum as a verbal punchbag because of how I felt. So maybe give her a little time to cool off and think things through clearly.....

    X
     
  11. Adcat

    Adcat Registered User

    Jun 15, 2014
    290
    London
    Oh Gavin! Just read my posts. I have two horror siblings who are invisible now. Just read my posts.
    It's common and often irretrievable.
    I agree with all the advice you've been given already. Your father is in charge and should be supported in making the right decisions for his wife. Stick to your guns and support your dad for your mothers best interests.
    I would strongly advise you to get psychological support throughout this, the stress can be overwhelming.
    Take care and keep posting.
    X
     
  12. GBFast

    GBFast Registered User

    Jul 13, 2015
    10
    An update ....

    My sister set-up a meeting for Friday (11 Dec) with my mum's care manager. For some reason, she had this notion that the meeting was at 2.30pm, but no time was ever set.

    Anyway, the phone rang this morning (Friday) at about 9.45 and the case manager said the meeting between my Dad, sister and me was set-up (at my mum's current home) for 11.00am.

    My sister said she couldn't make it today (no explanation) - having been the one who wanted it to happen. So it meant me and Dad - who is 77 after all and I really don't know know how he is taking the strain - had to do all the running round for a meeting that we hadn't even arranged!

    So, my Dad and i went to the meeting. The case manager said it would take months to convert a house appropriately (involving ANOTHER disruptive interim move to a temporary home) and, where severe dementia is concerned, the health trust would not sanction a stair-lift, or maintain one privately installed, basically because patients with severe dementia can no longer use them (and that was certainly true of my Mum's last months of trying to use it at home for a few months this year - she just couldn;t use it herself).

    The care manager said the dogs at my sister;s hiuse were news to him and were accidents and falls waiting to happen.

    He also confirmed that a 24 hour package is impossible - family night-time supervision would be required (as well as constant supervision during the day).

    Basically, I know my sister did not turn-up because she did not want to hear any of this in company. Even she would have been embarrassed by her big, ill-thought thought ideas. In fact, she hasn't even phoned today (Friday) to see what happened at Friday's meeting (which she wanted). I know his sounds like a character assassination by me on her, but her behaviour is disgusting. Even my Dad, who gives her FAR too wide latitude, is really annoyed with her lack of interest in the aftermath of the meeting. I just think she couldn't care less, and the impact of the end of her social life if Mum moved-in with her has dawned on her. Turning her niece and nephew against me on Thursday about this really annoyed me yesterday, but I've strangely got over it. They'e obviously their mothers' children and it's in their blood.

    Now, to some better news: my Mum was assessed yesterday (Thursday), and has been cleared for EMI for another home. Her only real issue is restlessness at night, and that was no grounds for a problem. The manager said that was not an issue.

    A home, quite nearby, has been half-converted to EMI (severe dementia), and Dad and I have confirmed with the home that we want Mum to move there, next week if possible. The rooms are completely refurbished, single, large, quiet, fully and safely equipped, and secluded.

    So, while this cruel condition is far from happy, and the family friction is painful, maybe it's the best outcome of a difficult situation.

    Any further updates to follow,and your advice is always welcome.

    Thank you.

    Gavin.
     
  13. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    9,769
    Merseyside
    I'm glad you've got things sorted Gavin. I hope your mum settles quickly.
     
  14. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,593
    Yorkshire
    #14 Chemmy, Dec 12, 2015
    Last edited: Dec 12, 2015
    I just wanted to welcome you to Talking Point, Sunnysky, and thank you for posting such an honest account.

    It takes a strong person to admit that they were in the wrong and I commend both you for doing so and your mum for allowing you to work through your anger, whilst not giving in. It's always refreshing to see thinks from both sides.

    Hope your uncle is doing well.
     
  15. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,593
    Yorkshire
    Agreed. Well done for putting your parents first.
     
  16. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    Welcome to tp. There is a dementia trainer in the usa called Tepah Snow. Her videis are on youtube and very good. The shocking statistic she quotes is this... for every 5 families facing dementia 4 will fall apart and 1 will pull together. Its not your family, its this terrible illness. You are putting your mum first. Your sister cant cope with her guilt. Your dad is stuck in the middle. Your sister might never come round as then she has to accept she also put your mum in care. She cant cope with it. On the other hand you cant cope with your mum not getting the best care. You are able to see clearer than your sister.
    My story is horrible too. I have a sister who has vosited mum in her CH one in 8 months even thiugh she does not work and lives 10min walk away. Those visits would mean so much to mum. The truth is my sister used my mum as a wallet and now she has little hard cash she has stopped visiting. Its hard but we can only manage our own behaviour. My relationship with my sister is now broken.
    Best of luck with the move. It sounds like you havr chosen well. Just bite your tongue and let your sister say what she wants. It takes 2 to argue and your dad could do without it. Do it for him. Your a very good son. We all know how hard this is. We are all behind you.
     
  17. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,475
    Yorkshire
    Hi Sunnysky - what a bright hopeful name :)
    A warm welcome from me too - and also thanks for the insight - I dearly wish all were as honest with themselves as you have been and so very glad that your family at least worked through your situation - maybe there is hope for some of us; who knows

    GBFast - glad and sad to read your update - families are such weird unpredictable beasts :(
    It sounds, though, that there are positives - so I hope your mum will be settled soon and that your dad has some peace of mind knowing that his wife will be well taken care of and he can spend time with her without the worry of doing the physical care himself
    You're a great support to your parents :)
     
  18. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Well done Gavin. That is absolutely brilliant. I am so pleased for you and your Dad and your Mum and I hope that the move goes smoothly and that she is happy there too :)
     
  19. missmarple

    missmarple Registered User

    Jan 14, 2013
    206
    GBfast just wanted to say well done for your perseverance and getting your mum to a safe place. It seems to me that involving the professionals was an important step in getting the situation on a more secure footing. Dementia can reveal the faultlines in families like nothing else.Your sister has been revealed as someone who entertains hopeful fantasies, but cannot step up to the plate.
    My situation has some similarities, my father's dementia has progressed a lot since the summer, he is just about non verbal now, doubly incontinent, and cannot walk at all without falling. It is quite shocking. Only 8 weeks ago he was managing his own toileting and walking to the barbers and the pub every week.
    He was diagnosed 3 years ago and has been living at home with my brother who has mental health problems, and professional carers form 8am to 6pm. He is now in hospital following one too many falls. There is a meeting on Friday to determine where he will be cared for now. Bro wants him at home, but cannot do the personal care. I doubt he will attend the meeting as he is phobic of this kind of situation, lots of people most of whom he does not know and a very serious decision to be taken.
    If it wasn't for bro I'd be looking at residential places for Dad to be cared for. I'd like him to come to his own realisation that the current situation isn't particularly viable.
    My own particular hatred (that's not too strong a word) has been reserved for my brother's 3 siblings, all of whom have made various promises of help over the years, absolutely none of which ever materialised. They have entirely disappeared from dad's life, and until recently he was requesting to see his brother with some regularity. It was painful. Invisibles indeed.
     

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