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Mother with severe dementia, just admitted to care home & now family friction

Discussion in 'LGBT people with dementia and carers' started by GBFast, Jul 13, 2015.

  1. GBFast

    GBFast Registered User

    Jul 13, 2015
    10
    This is my first post on this site / forum, and I am posting it here simply because I am a gay man and feel that my sexuality is making the scenario even worse. I hope that, maybe, I can get some advice, and find some empathy from others in a similar situation.

    I detected problems with my Mother during 2012. I have collected Christmas and Birthday cards from those closest to me for many years. I had kept Her Christmas card to me from 2011. It was written in the normal the way I had been used to seeing from my Mother.

    I then received a birthday card from Her in October 2012. Her writing seemed shaky and hesitant, but Her greeting was still clear.

    Finally, I got her Christmas card in December 2012. She could not complete it and my Dad had to finish it for her.

    I took her to see her GP, and She did not know where to go (to the reception desk) when we went in, even though she had been there many times over the years. The GP referred her to a specialist.

    When she saw the specialist in February 2013, her MMSE score was 16/30.

    Her deterioration in 2013 was gradual, but she then fell and broke Her hip (in her home's kitchen) in October 2013. She had pre-existing mobility problems due to arthritis, and a stair-lift had been installed a few years ago, but this made things worse after that.

    Since then, the deterioration has been more rapid, and especially in the past few months.

    Six weeks ago, I took Her (with my Dad) to see a specialist doctor again. She advised us that Her MMSE score was now just 4/30.

    By now, it was becoming increasingly obvious that Mum needed proper, professional care. My Dad has been doing His very best for the past couple of years, but He is 77 and his own health has been deteriorating - largely due to ageing and stress.

    My Dad, sister and me visited a local care home six weeks ago. It is a very new and purpose-built place, and it seemed like a good place for Mum to be placed in. She was provisionally due to be admitted thee on 15 June this year.

    However, that morning, my Dad - encouraged by my sister - decided not to go ahead with the admission. My sister, who has done some 'caring' in her life with non-relatives (though she has no actual qualifications) said that she would come up to my parents' house every morning and toilet, shower, dress and prepare breakfast for my Mum every day. My Dad had already said how much He would miss Mum if/when She went into a home, even though He had told me many times that He was finding it harder and harder to look after Her, so I was not surprised that my sister's "offer" appealed to him. I felt it was the wrong decision, because we had already gone through the pain of Her having to go into a home, and it was only postponing the inevitable.

    By early afternoon that day, My Mum had had to have two changes of clothing due to double incontinence, and my Dad and sister were realising their mistake.

    I had to do something, so I took the initiative two weeks ago.

    First, I contacted the home that She was due to be admitted to on 15 June. They said they could no longer accept Mum as they had received a copy of the specialist doctor's report, indicating severe dementia. The home is not registered for severe dementia sufferers. In reality, they conceded that, had she been admitted as originally planned on 15 June, they would not have moved Her on but would have seen how She settled there. It felt like an opportunity lost.

    I then spent two days ringing-around and visiting homes as close as possible to where my parents live. I could only find one place, the home's manager visited to assess my Mum for admission, and accepted Her, so Mum's admission there was set for Monday 6 July. We visited the home with Her a few days before Her admission to see what she felt about the place. She seemed to feel OK about it and chose the room that would be Her's. The home has a good reputation and has won awards, etc.

    We took Mum there for admission one week ago today. Either my Dad or I have visited Her at least once a day/evening since. My one reservation has been that my Mum has always been a fussy eater, but it's early days and we need to see how it goes.

    On the other hand, my Dad has been missing Mum badly and fretting, and appearing to be looking for negatives (eg. lack of constant supervision), almost appearing to want Her to go back to their house (even though He kept saying he couldn't cope and his own physical and mental health has been deteriorating).

    Yesterday, my sister joined-in, and said she also felt Mum should leave the home and go home. I told her that I disagreed, only to be greeted with a tirade from Her saying that I had obviously moved-on and didn't care.

    I have honestly never been so hurt in all my life, because it could not be further from the truth. But then my sister has always been a good one for finding problems and fault, but short on solutions.

    I did put this to my Dad: my sister has a house with a downstairs toilet, her two children live with her but are grown-up, and she thinks of herself as a 'carer'. She told Dad she had the two children to look-after!

    I hate the way this awful condition has also created family friction. Even though my sister said the hurtful things to/about me, I don't want to fall out with her, because it will only make things worse, won't get any of us anywhere, and will also annoy my Dad.

    Does any of this resonate with any of you? I know there is no ideal outcome with any of this, but making the best of an awful situation.

    Thank you for reading and, if any of you do respond with comments or advice, thank you in advance.

    G.
     
  2. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,190
    Female
    Chester
    Welcome to TP

    Just thought I'd comment, that whilst I don't have daily contact with anyone who is gay (my niece is and lives in the US), there is nothing which comes across in your account which relates to your sexuality. You are trying to do the best for your mum, and are actually thinking and acting in her and your dad's best interests. They admitted themselves that they struggled, and I'm guessing many homes wouldn't take her. Sadly this illness does rip many families apart and what you have stated is not uncommon to read on here.

    I don't have any answers for you, hopefully others will be along soon who will have. If it was me, I'd fight to keep her in the home and hope I could build bridges with others once she has settled. Perhaps take your dad to visit but I'm guessing you work so hard to do.

    Interestingly I had noticed a decline in my mum's writing in cards and letters before diagnosis as well.
     
  3. Beate

    Beate Registered User

    May 21, 2014
    11,716
    Female
    London
    #3 Beate, Jul 13, 2015
    Last edited: Jul 13, 2015
    I also don't understand why you think you being gay does make the situation of your Mum's dementia worse? Has anyone said anything? Because trust me, dementia is a great leveller and your orientation doesn't make the slightest difference to the guilt your sister and father feel for having put your mother into a home. But they didn't - dementia did. They have nothing to feel guilty for and will hopefully soon understand that it was the best decision. If the home is good, maybe they could keep them informed how she is settling in but also gently advise them to visit a little less at first so she has a chance to do so?
     
  4. GBFast

    GBFast Registered User

    Jul 13, 2015
    10

    I think the reason I feel it is relevant is because my sister has two children and a (new) boyfriend, whereas I am single with no children. Her attitude yesterday indicated that, because of her connections, she should be allowed to have a life, whereas me, unconnected, come across as the Big Bad Wolf, when I've only wanted to be pragmatic and make the best of a horrible situation caused by the cruelest of illnesses.
     
  5. Jessbow

    Jessbow Registered User

    Could your dad spend time at the home with mum? Perhaps have lunch there a couple of days a week? Even if he sat in an chair beside her and had a snooze, they would be spending time together.

    Does your dad have interests or friends that could get him out? He must be lonely and his life feel pretty empty at the moment.
     
  6. Beate

    Beate Registered User

    May 21, 2014
    11,716
    Female
    London
    She's just trying to guilt-trip you. Everyone's got the right to a private life, and besides, you were thinking about what's best for your Mum, not for you.
     
  7. canary

    canary Registered User

    Feb 25, 2014
    10,558
    Female
    South coast
    Everyone has a relative like that who arrives in a great fuss, tells you what you aught to be doing and where you are going wrong, but of course they cant possibly do anything so they then promptly disappear and leave you with the mess :rolleyes:

    I think you have made the right decision - it doesnt sound like your dad could cope with everything at home. Its a very difficult thing to do and you have done your best for her by finding somewhere where she will be fed, cared for and kept safe.
     
  8. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    Hello and welcome. Everyone, regardless of race, creed, or sexual persuasion ( or none come to that;)) is free to come and ask for help, and I sincerely hope that the same everyone will treat and be treated in exactly the same manner.

    OK, that gets that bit over and done:rolleyes::D So you have a sister who is causing havoc..is she older than you has she always been bossy? I guess I'm asking what the family dynamic has been up till now so that I can ascertain the most helpful advice I can.
    If she has always been able to get her way with Mum and Dad then your work might be a bit harder, but remember that you are not alone in this. Not only have you got TP here, you've got the Social Services to fall back on too.

    Am I right in assuming that Mum has had a Social Services/Local Authority assessment and they agreed/suggested Mum going into a Care Home. Is Mum self funding or is she getting help with the costs? Has anyone applied, on her behalf for Attendance Allowance and has your sister perhaps applied for Carer's Allowance, which I think might stop now that Mum is in a Home? ( I may be wrong on this but someone will correct me , I know)?

    I would suggest that you sit down with your Dad, and chat. Ask him if he can tell you how he can manage if Mum was to come home. Tell him that he'll have to seek help and advice from the SS Adult Social Care, to try to arrange for carers to come in to wash and dress Mum, and to change her incontinence pads. Someone will need to be there 24/7 and 365 to make sure that she is safe.
    Keeping Mum in a Care Home is sad, believe me I do know....I've been there. But if her illness and needs are such that she can't be looked after at home , then it's down to you, as a family. and the SS to find a better way

    Forgive me if I sound accusatory, but has your sister perhaps realised that any inheritance is going to be severely affected if Mum is having to meet her costs? and likewise she might be feeling guilty that despite saying she'd be there to care, the realities ( and two children) are too much.

    Lastly, and this is a bit stern.....you might have to man-up a bit and be more forceful. ( yeah I know I'm a bossy mare!!):eek: If you want to be part of the team which cares and sorts out things for your parents, sometimes you are going to have to stand your ground.....in fact, to tell the truth....often you have to be b. minded when dealing with the authorities. So start practicing calm and forceful.....it is for Mum's sake.:cool:

    One last thing....no reason to stop posting in the LBGT ( hope I haven't missed anyone out, if I have...oops sorry not intentional:)) you may feel more comfortable there, but you may get a more varied range of answers to a Mum- specific problem on the general..."I care for a...etc" segment.
     
  9. MissDiane

    MissDiane Registered User

    Oct 18, 2013
    73
    It sounds like you have made the right decision to me. You are doing the best you can for your mum, and dad. It is obvious to me you care a lot.

    I am in a similar situation, mum went into care 2 weeks ago, dad is still at home and is missing her. It's early days for us but i'm hoping mum will settle into the new care home and dad will get into a routine of his own, to include visits and escorted trips out with mum.

    I have never got on with my sister, and she has not been involved in mum or dad's care for many years. I know she would disagree with the decision because she is mis-informed. She is not aware of the day to day problems we experience. I do not ask her for any help or advice. She has also recently suffered a serious illness so I do not want to burden her.

    My dad would have never put mum in care himself as he would feel so guilty. So sometimes it's left to others to make those heart wrenching decisions. I sympathise with what you are going through. it is not an easy decision. We don't have a crystal ball we can only act on the information we have and do what we feel if right for our loved ones. I would be doing exactly what you have done.
     
  10. loveahug

    loveahug Registered User

    Nov 28, 2012
    1,071
    Moved to Leicester
    Everything you are all going through is perfectly normal. Blaming yourselves, each other, searching desperately for a solution so mum can come home it all stems from the fact that she's your mum and you love her. Of course your dad wants her home, he's bereft and lonely. It's an awfully painful period of adjustment for everyone. Our mum wnet into care at the end of January and I still have times when I cry about it and lay awake at night trying to find a solution. My brother and daughter both do the same, it's just awful.

    You might have to be prepared to be the big bad wolf for a while as they are looking to blame someone in their distress and anger at the situation. You come across as a lovely caring person who is also a problem solver/solution provider which means you're going to be pragmatic about it but if you can weather the storm and concentrate on helping your dad to adjust it might all calm down soon. Families eh!

    Hugs x
     
  11. GBFast

    GBFast Registered User

    Jul 13, 2015
    10

    Thank you all for your kind, considered and thoughtful responses.

    I did think twice before I specifically posted in the LGBT part of the forum, because I do not make a song and dance about sexuality.

    However, I DO think there is an issue when it comes to LGBT people in terms of no succession or focus (eg. on children).

    Perhaps ironically, I am getting support from my sister's boyfriend, who is a lovely guy and with a strong faith which he quite obviously practises in terms of compassion in this life as well as believing in the next one.

    I don't want to be washing dirty linen in public, so I won't go into my sister's past or behaviour over the years. Suffice to say that, with regard to the impact on my parents and her children in particular, there was a lot that was negative and stress-inducing.

    My Dad used to do night-duty and my sister was married or off doing something else. In those circumstances, I used to spend most evenings with my Mum, and we would just talk about stuff, or drink tea, or watch TV together. I think that is why I was so hurt by her attitude on Sunday because it is so far from the truth.

    My Mum has only been in the home for eight days, so it's not long.

    None of us has the ability to properly look-after Her - including my sister with her "experience" in caring (when she is no more formally qualified than I am).

    For those interested, I don't currently work. I took voluntary redundancy from my last job. I don't have any particular financial issues (as yet), but I also lack focus and spend most of my time thinking about what my Mum has been reduced to and also my Father's plight.

    Maybe I should move-over to the main forum, but I don't feel like a 'carer' any-more as my Mum is in care, so I'll stick around here for the meantime.

    Again, thank you all.

    Gavin.
     
  12. loveahug

    loveahug Registered User

    Nov 28, 2012
    1,071
    Moved to Leicester
    Gavin, don't be ridiculous mate, of course you're a carer! If you didn't care you wouldn't be here. Nothing to do with your sexuality either, a carer is a carer, full stop.:)
     
  13. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,190
    Female
    Chester
    You are and will be a 'carer' whilst your mum is alive - you are also being a 'carer' for your dad whilst you support him.

    I hated it when I realised I was a 'carer' for my mum, but that is what I am.

    Don't overthink things with the spare time you have maybe the answer. I agree with loveahug that you come across as pragmatic and problem solving, which is often what is needed when dealing with the complexities of dementia.

    If you read other threads on here, 8 days is really in the early days of settling in, and hopefully life will be better in a few weeks and months.
     
  14. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,051
    Yorkshire
    Post where and when you will - what you write will be read and responded to, as you have discovered - we're all in similar kinds of situation and are here to support each other - personally, I always press the 'Today's Posts' button when I come on TP and rarely even notice which specific section a thread is linked to
    Dad's been in his care home a few weeks now. He is safe and well looked after - and oblivious to any 'stuff' going on in the background, that's for me to deal with - I'm an old spinster (just never found the right man - yet) and have had the 'well how would you know .... you've never had children ...' thrown at me, as well as the 'I've worked with ...' usually at a moment that serves as a perfect example of lack of knowledge and understanding on the speakers' part
    So, as long as your mother is in the best place for her, ride out everything else - you know you are being the best son you can be
     
  15. GBFast

    GBFast Registered User

    Jul 13, 2015
    10
    Hi everyone.

    Well, a few days have passed and I've had a few days' more to think about the situation.

    My Mum has severe dementia- 4/30 on the MMSE score. She is doubly incontinent and finds it difficult to eat un-aided.

    I have not been in contact with my sister since her tirade against me on Sunday and, to be honest, I don't want to be. Her boyfriend HAS been in-touch with me, and urging me to contact my sister. However, she said all the untrue, hurtful things, and I believe it is for her to reconcile, and not the other way around. I have nothing to apologise for.

    I was with close relatives yesterday evening - visitors from New Zealand, and also those who always live close to me - and they know what my sister is like.

    The nursing home that my Mum is in is not perfect. It is not brand new, and many of the other residents also have severe dementia. So, there is always the worry that She will be dragged-down by them.

    However, I spoke to a care assistant yesterday and she said that Mum was eating OK, only getting-up with assistance, and apparently sleeping OK.

    This all just seems like the end of an era and can only ever be making the best of a cruel situation.

    Gavin.
     
  16. loveahug

    loveahug Registered User

    Nov 28, 2012
    1,071
    Moved to Leicester
    Gavin my heart goes out to you. All we, as loving, caring human beings, can ever do is make the best of this cruel situation we have all found ourselves in. What have to do is forgive ourselves for our very human failings too and not beat ourselves up continually for our perceived failures. It is not for others to tell us we have failed when the evidence is there to prove we have not. (Hmm, think I should read this to myself out loud a few times :rolleyes:)
     
  17. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,190
    Female
    Chester
    Good to hear from you.

    I had an almighty barney with my brother at xmas over my mum (we have fallen out before) and OH made me resume contact with him. (Mum was in hospital with pneumonia, he had visited on what was actually his xmas visit as he lives 150 miles away, and she has moved wards again, so when he told the nurse mum had some memory problems she took him at face value and basically accused me of lying when I went in and said she had dementia, he just didn't see he had done anything wrong to affect mum's care).

    I recognise that in my mum's best interests I need to keep in touch with him and we need to make joint decisions. I had to climb down, to make this happen.

    I am not sure if I will maintain any contact with him once mum has gone, my family (OH and 2 kids) had had enough of him, his OH and his kids years before we finally fell out but I need to work with him for mum's sake.

    Whilst your mum and dad are alive it is worth trying to work together, and if you put out the olive branch it doesn't mean she was right.

    Maybe if the falling out was on Sunday give it a few more days yet though.
     
  18. canary

    canary Registered User

    Feb 25, 2014
    10,558
    Female
    South coast
    Mums home is a bit scruffy, but dont worry about that - its the quality of care that counts and if they are getting her to eat then that is good.
    Also, dont worry about other residents dragging her down - that wont happen. Her dementia will progress at the rate that it progresses, irrespective of the other residents.
    I am sure you will visit regularly and will find that you will get to know the other residents and will start to see them as people, not just dementia sufferers, and will get to know their relatives too. Mums CH has become almost like an extended family.
    It is still very early days for you and will take a lot of adjustment
     
  19. Chrisw365

    Chrisw365 Registered User

    Nov 24, 2015
    2
    Tearing our hair out

    Hi. Sorry to hear of your upsets. It does ring true to me. I and my sister and her family are all tearing our hair out over parents worsening condition. In such stressful conditions its very easy to lash out. Blame someone else. We are used to finding solutions and in our case there are none. In fact it's going to get much worse. Without getting too depressing I find I can only do what is essential. Everything else just has to go on the ' to do list'
    Sorry don't suppose that's much help
     

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