1. elisebean23

    elisebean23 Registered User

    Nov 9, 2018
    Hi all - so I posted a few weeks ago that my Father was getting in house care, and my concerns about finding the right person. Sadly, over the last 2 weeks he has became progressively aggressive. My Mother was his carer, but it ended up with all the children staying in the house after a particular incident, as we were concerned for my Mum's safety, In hindsight he should have been sectioned then, but we were so scared for what that could do to him. We then made arrangements for him to go into a care home. It went from bad to worse, where he has really hurt a poor 90 year old woman, and the care home staff were also threatened, and he has been sectioned under the section 2 mental heath act. He's been there for almost a week, and whenever the medication wears off, he's very violent to the point where he's having to be injected to medicate him, and it's taking 3 or more staff to restrain him.
    It's heartbreaking in that my Dad was the kindest man, and so, so loving. I knew things were going to get hard at the later stages but I had no idea this could happen. I feel like I've lost him, that amazing kind and caring father I've known all my life doesn't seem to be there any more. I don't recognise this person.
    Has anyone had this experience of someone being like this? I've read it's quite rare - he has dementia with Lewy Bodies.
  2. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    Hi elisebean23
    I'm so sorry you're having to deal with this. I have no experience of dementia with Lewy Bodies but I have experienced domestic violence in the past.
    I'm afraid you have lost your dear father to a great extent - but your grief continues as you see him suffer. I hope they'll be able calm him by sorting out his medication. Being sectioned sounds awful but others on the forum have said that it can be the best solution for their PWD.
    I hope your mother and all the family can get some rest and recover from a very stressful period. I wish you well.
  3. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    #3 Bunpoots, Dec 20, 2018
    Last edited: Dec 20, 2018
    Hi @elisebean23
    My dad was sectioned on a section 2 in the summer. This wasn’t due to his violent behaviour though but to keep him safe as the hospital kept trying to discharge him home when he was unsafe there.

    I haven’t any personal experience of violence in a PWD but a friend of mine had her dad sectioned a few years back due to his violence towards her mother who, sadly, didn’t survive. You’ve done well to keep your mum safe.

    My friends father was eventually allowed to go to live with my friends sister on the proviso that he had 2 overnight carers. She had to fight to get him out of the section 3 care that he had been put on and get him home.
    Given the chance to do it again she would probably not have chosen to bring him home. He wasn’t violent anymore but very difficult to care for as his needs were so high.

    My friends father was a similar age to yours at the time and had always been the kindest and gentlest of people. He had vascular dementia. It’s dreadful what this disease does to families. Wishing you all well.
  4. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    south-east London
    @elisebean23 I do feel for you. My husband was always the gentlest and most loving of people too, yet he also turned violent at times during the progression of dementia and he was sectioned twice during the course of his illness.

    It all felt very bleak both times. The first time he was in a secure unit for two months but fortunately , with tweaks to his medication, he was eventually able to return home.

    We had random surges of challenging behaviour over the years, but they were quickly controlled through further tweaks to medication. However, earlier this year (two years down the line) things got out of control again and so he was sectioned again. Like your father, it took four to five people to administer his medication via injection.

    The daily reports of how he had punched staff and patients alike had my stomach in knots each time I visited.

    But the violence was not constant, and although this side was heart-breaking to witness, the man I knew and loved was still there. I was lucky enough to see him every day, and I cherished those moments when he was himself again, or when staff told me things that he had done during my absence that were absolutely my husband.

    The only comfort I can bring you is to know that, even after this extreme level of violence, the staff were eventually able to get on top of things again (it took about four months the second time around) and he became known as the 'Big Friendly Giant' by staff.

    However, by this time his needs were such that going into a nursing home was really the only option, for his safety and ours. As it was, he got sepsis and died before that happened.

    I know that it is hard for you to see the gentle, loving father you know at such a chaotic time as this - but trust me, he is still there and with expert care the challenging behaviour will become more controlled and I believe you will see the more contented and loving side again.

    Thinking of you and your family.
  5. elisebean23

    elisebean23 Registered User

    Nov 9, 2018
    Thank you for all your kind words. It's comforting - more news today is that he has now stopped eating and drinking, and has taken to his bed. Which is unheard of for him, in all these years. Even when he has been quite poorly. Waiting for the doctor to see him.
    So worrying, and he is an hour and a half drive away - and the doctors are advising we don't see him at the moment. Very difficult when you've been by his side from day 1 of this, and to suddenly feel useless. Trying to stay positive..
  6. Wishful

    Wishful Registered User

    Nov 28, 2014
    My husband has dementia with Lewy body and after after three weeks away from home (one on respite and two in hospital) he came home Friday lunchtime.

    His behaviour was most challenging and I found him difficult to look after him. He became violent, kicking and thumping me. He'd squeeze my hand so tight it would hurt and on several occasions try and bend my fingers back. The two carers that came for each visit found him difficult to handle.

    He's back in hospital now and a safeguarding issue has been raised. I am no longer able to keep him or me safe. I have no idea what the future holds but I can't have him back home.
  7. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    Hi Wishful.
    I'm so sorry. Domestic violence is terrifying and it must be heartbreaking when it's due to illness and you know the person would never have done it in the past.
    I'm glad to hear he's back in hospital. You're absolutely right that he can't come home.
    I hope you have friends or family who can support you and celebrate Christmas with you. Very best wishes.
  8. MarieC

    MarieC New member

    Dec 27, 2018
    Hi Elisebean,
    My heart goes out to you. My mum has frontaltemporal dementia and she too has become a different person. She has gone from the kindest, sweetest lady to an angry, violent person. We too had her sectioned last year, which broke my heart but looking back it was of great benefit. We had to fight with the hospital to allow her the right meds to bring her home but we eventually got them. She was in hospital so long the section 2 was changed to a section 3 which means we have constant support from specialist doctors and regular visits from psychiatric nurses. We also are entitled to 5weeks a year free respite which is paid for through social services.
    Also after a huge battle with the hospital mum was given the drugs to keep her calm. We were also prescribed as and when needed drugs to bring her down when she's angry. We also got sleeping tablets to help her sleep during periods if sundowing.
    It's so, so hard to watch your loved ones disappear before your eyes not ever knowing what the journey will bring next and it's easy to say stay strong but its the hardest thing to do. You are definately not useless, you are an amazing person who supports and loves someone unconditionally through their journey.
    Take care and look after yourself.
  9. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I found the aggression the most difficult to manage and my heart goes out to all who have posted here of their experiences.

    I think all anyone can do when aggressive behaviour puts carers and others at risk is to share the responsibility with the medics.

    It is devastating I know but the illness has taken hold and neither the person with dementia or the carer can hope to make things better without medical intervention.

    Thank goodness there are people on the forum who understand the distress these behaviours cause. I used to try to imagine what was happening to my husband to make him behave in this way and I knew no matter how frightened I was, he was even more so.
  11. elisebean23

    elisebean23 Registered User

    Nov 9, 2018
    Thank you for the messages.

    Unfortunately, on Monday my Father was rushed to A&E from where he was sectioned. At the time they thought he had had a seizure due to diabetes and him having not eaten, but sadly it turned out he had developed Sepsis. It was a long 5 days, where we didn't leave his side and slept at the hospital in is room. We had some very difficult decisions to make, putting a DNR in place, and as a family we also decided to stop any life lengthening treatments and let him slip away with no more pain. He passed away yesterday morning, with my brother and I by his side.
    It's been a whirlwind, the past 3 weeks, and very traumatic seeing how much my Father had changed, his weight loss was shocking and he was covered in cuts and bruises, and his poor mouth was a state where he hadn't let anyone near him for personal care. We expected him to get well enough to go into a special nursing home, as the medical team were convinced they would be able to help him.
    A lot for us to process, and to begin to grieve such an amazing, kind man. It just doesn't seem fair his life ended this way
  12. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    oh @elisebean23
    such sad news
    I hope it's some comfort to you both that you were with your father
    my condolences
  13. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    @elisebean23, I am very sorry to hear your sad news. Please accept my condolences. This is such a difficult time and I am sorry. Best wishes to you and your family.
  14. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    south-east London
    I am so sorry for your loss. Wishing you and your family strength.
  15. Jintyf

    Jintyf Registered User

    Jun 14, 2013
    I am so very saddened to hear about the sad loss of your dear Dad. Wishing you strength in the time ahead and that you will remember him as the kind man he was before the illness took over. Sending hugs.
  16. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    It was a horrible way for your father's life to end - and horrible for you and your family to witness, after knowing him as the loving father he was.

    You will grieve for what he has lost through this disease, and grieve for what you have lost. Have happy memories - you did your best for him. Do concentrate on the man he was, not what this cruel disease did to him.
  17. Jessbow

    Jessbow Registered User

    How very sad, Keep the good memories close, that was the man he really was x
  18. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    I'm so sorry to read your sad news @elisebean23. Sending my condolences and wishing you strength for the days and weeks to come.
  19. Kat loves milk tray

    Kat loves milk tray Registered User

    Jan 1, 2019
    Sincere condolences, so sorry to hear your sad news. Absolutely heartbreaking to witness and be on the receiving end of the aggression from your loved one whom prior to the illness would never have raised a hand too you.
    I have been experiencing the same with my Dad whom has punched and kicked out at me.
    We have an appointment with his GP next week so I am going to dicuss stronger medication to see if this will bring calm to my Dad.
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I`m so sorry to read of your father`s suffering @elisebean23. The dementia certainly took it`s toll on all of you.

    I hope you will find some consolation in knowing he at least is at rest now. No more aggression. No more fear. Peace at last.

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