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Dad has dementia and the family is numb.

Discussion in 'Welcome and how to use Talking Point' started by Pet37, Sep 12, 2018.

  1. Pet37

    Pet37 New member

    Sep 12, 2018
    7
    #1 Pet37, Sep 12, 2018
    Last edited by a moderator: Sep 12, 2018
    Hi All

    My 81 year old father has recently been diagnosed with vascular dementia. It is a long story (sorry) but I am hoping someone can offer some advice once they know the facts.

    Dad had cancer many years ago that lead to him having his stomach removed. He then developed COPD (they think as a result of damage done at the time of the op) We have spent years with him in and out of hospital. He spent anything from a night to six weeks at a time in hospital when he had an attack and we have nearly lost him on a couple of occasions. But like all long term illness it became the norm, and we got used to the early morning calls from my Mum of the 'guess where we are' variety whenever he was admitted.

    He suffers terribly with pain, which makes him very grumpy. He has become more forgetful in recent years and he has a terrible jealous streak, meaning he would accuse my Mum of cheating on him whenever he was hospitalised for more than a few days. Things that now make me wonder if dementia has been in the background for a while.

    About 6 weeks ago he and my mother had an argument and he took a massive overdose of painkillers. My sister and I hadn't realised how bad his personality had changed until this point, I could never have imagined my father trying to take his own life regardless of the pain or anything else. Apparently the argument was over her sleeping with her recently deceased sister's husband. The fact that she has spent 24 hours a day by my dad's side since long before my Aunt passed apparently meant nothing.

    He was rushed to hospital where they discovered he was suffering with double pneumonia. They performed a CT and MRI scan to see what damage he had done with the drugs and then they told my mum there were signs of a couple of bleeds on the brain. When he started to regain consciousness in ICU we noticed some odd behaviour, he was hallucinating and fiddling but he has done this previously while in ICU as a result of the drugs they put him on so we did not think too much of it.

    They moved him to a ward that had a mixture of elderly patients, many of whom were exhibiting signs of strokes and or memory issues. Unfortunately my mum never seemed to get a lot of feedback from the hospital and what she did get she did not always understand so we have been trying to get an idea of what was happening by ourselves. I had a feeling from researching online that we were going to be facing vascular dementia but the doctors never gave any firm diagnosis. (In fact we had one tell us he was doing really well and he expected a near full recovery and then the next day a different doctor told us he would probably never be able to live at home again)

    As the weeks went by he became more aggressive, and seemed to lose his grip of reality more, telling us he had been for a 35 mile hike in the snow that morning. In the end he would constantly wander the wards, stealing stuff from other patients and he ended up with almost constant 1 to 1 care.

    Last week my mum gets a call to say they can no longer deal with him at the hospital he was in and they were moving him to another hospital that night. The doctor she spoke to was a bit of an **** by the sounds of it, pretty much told her dad was never coming home, he would not be accepted into any care home as he was violent but they did not expect him to stay in hospital very long. My mum understood this to mean the only other option was he was on the verge of dying. She was distraught when she called me.

    So he is now in the new hospital and to be fair it is more like a care home than a hospital as far as the residents are concerned. We have to go through two lots of security doors to access the ward so we know he is secure but Dad is treated less like patient and more of a guest.

    He picked up hugely the first couple of days, back to how he was pre-overdose but as the days have passed he is starting to slip back a bit. He is not aggressive at the moment but he is wandering a lot more and he is still not sure what is going on around him sometimes. The worst thing is as the new hospital is further away and my mum doesn't drive she cannot get to see him everyday. Public transport takes her over two hours each way and it is just too much for her. I worry this will not help Dad at all.

    So finally I am getting to the questions. Next week we have a meeting booked with Dad's care team at the hospital to discuss what is happening and what is going to happen next.

    Can anyone suggest what sort of thing I should be asking? My brain is so stuck on the 'will he live and will he be institutionalised for the rest of his life' that I can't think of what I really need to know. For those who have been there, what do we really need to know about what we are facing? Any suggestions would be very gratefully received.

    Thanks for letting me get this off my chest.
    Pet.
     
  2. canary

    canary Registered User

    Feb 25, 2014
    7,346
    Female
    South coast
    Hello @Pet37 and welcome to Talking Point.

    My goodness, your family has certainly been through the wringer!

    From what you have said, I think your suspicions of him having had problems for a while are probably correct and the delusion that the spouse is cheating on them is, unfortunately, very common with dementia, although Im very sorry that it resulted in him taking an overdose.

    I think he was almost certainly suffering from delirium after the pneumonia. It is very common after an infection of some sort, particularly a urine infection or pneumonia. Delirium does usually improve, but they dont always get back to the level they were before. Im sorry you have been given so much conflicting advice from doctors etc - hospital staff are frequently woefully undertrained in dementia. The place where he is now obviously suits him and it sounds to me as though it is an assessment unit. People on these units are usually assessed to see about their symptoms, what the triggers are and whether medication can help. I do not have any personal experience of assessment units, but many people on here do and Im sure they will advise you about this.
     
  3. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    3,231
    Male
    Cyprus
    Hello @Pet37, welcome to TP from me too.

    Yours is a difficult situation and I feel that you may get some value from speaking to the help line. There are also a couple of factsheets that may contain some information that may be of use to you. I hope some of this helps.

    Links to the Factsheets and help line details are below
    https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/factsheet_hospital_care.pdf

    https://www.alzheimers.org.uk/sites...ds/deprivation_of_liberty_safeguards_dols.pdf


    National Dementia Helpline
    0300 222 11 22
    Our helpline advisers are here for you.
    Helpline opening hours:
    Monday to Wednesday 9am – 8pm
    Thursday and Friday 9am – 5pm
    Saturday and Sunday 10am – 4pm
     
  4. Pet37

    Pet37 New member

    Sep 12, 2018
    7
    Thank you both.
    @canary yes it is an assessment unit he is in (that was the term I was looking for) so I hope they will be able to offer more than the hospital did in as far as options.

    @karaokePete thanks for the links, I have had a quick read but I will sit and have a proper look when I am at home not at work.

    Hopefully once we have had the meeting I may have a better idea of what we are facing. The problem for me is I am an organiser by nature so I am really struggling with feeling so damned helpless and useless. I have a suspicion that these are feelings I am going to become well acquainted with as time goes by on this roller coaster ride.
     
  5. marionq

    marionq Registered User

    Apr 24, 2013
    4,880
    Female
    Scotland
    In addition to the above I am inclined towards thinking about your mother in all this. She has been under considerable strain and not having to visit every day and having nursing staff care for your Dad may well save her from further stress and illness.

    He sounds as if he is in the right place for this stage of his dementia and although you are naturally upset I think you should be consoled by that.

    Best wishes
     
  6. Pet37

    Pet37 New member

    Sep 12, 2018
    7
    Well we met with the hospital today and at least have a clearer understanding of what is going on.

    He is currently there under section 2 of the mental health act for assessment and treatment. They have him on antipsychotic drugs which have stabilised him a bit but he is still wandering when we are not there and is still not sleeping well.

    They are talking about moving him to a section 3 once the 28 day window is up and gave every indication that he will be there for a while yet.

    I left feeling more positive about the plans going forward but still struggling to see my dad a shell of his former self. Knowing it will only get worse takes my breathe away.

    My mum is not able to visit every day so while she feels guilty at least she is getting a little respite now.

    We are just taking it all one day at a time.
     

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