Finally a diagnosis... And the beginning of the end I guess

Discussion in 'End of life care' started by Ameliasmama, Dec 22, 2015.

  1. Ameliasmama

    Ameliasmama Registered User

    Oct 24, 2015
    44
    I've posted a few times recently. My Dad had a serious car crash on November 30th, to say we've been on a roller coaster is an understatement. But today, after years of suspicions, memory clinic referrals being postponed due to cancer treatment, the 3 weeks since the accident in a trauma ward and now an elderly general medicine ward have led to a diagnosis of advances mixed dementia. It's been a long time coming and while I'm relieved I know this now opens a whole new can of worms and I'm petrified all at the same time. Not just for my dad but my whole family,

    He's not in a good way, despite physically recovering well from the injuries he sustained in the crash, the trauma of it has somewhat accelerated his decline. He doesn't make sense when he does speak, apart from the odd word or two. He's gone from having the odd issue continence wise which we thought were due to prostate cancer treatment to double incontinence. one of many lightbulb moments has been realising perhaps that while thats contributed in fact it was probably dementia all along. Tests have given him the all clear in that sense. He's barely eaten or drank anything since the accident, just a few mouthfuls a day when prompted but soon refuses. And though he suffered a fractured spine and broken ribs, physically they're not restricting him mobility wise. Physios have managed to get him out of bed a couple of times but he's point blank refused since Saturday so he's now bed bound again, he doesn't appear to be in pain though. The first week or so he could sort of tell us when he was, he's totally calm now. Like he knows his time has come, if that makes sense.

    We were asked to consider a dnr being put in place today, which we've agreed to. Whilst my dad hasn't been right for a while, it's hit me like a ton of bricks. I'd already been thinking about it since the accident but having it said out loud seemed different. Like I'm giving up on him too, but At the same time I realise the dad I had has gone. Would I have had him longer if he'd stopped driving. Probably. He has no quality of life now even though medically wise all left 'wrong' with him is a chest infection and he finishes the antibiotic course for that tomorrow. He didn't have the best of lungs anyway, and further antibiotics are likely to do more harm than good?

    Yep, it's one big mess and I'm lost. I've not even got to the point that I have no clue who is going to care for my Dad. My mum can't anymore that's for sure




    Sent from my iPad using Talking Point
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,203
    Merseyside
    I'm so sorry you're going through this.
    I'd start looking for suitable care homes & asking the hospital about what they can do to help.
     
  3. Ameliasmama

    Ameliasmama Registered User

    Oct 24, 2015
    44
    I know, but I've no idea where to start. Today's not been a good day, I decided to concentrate on Christmas as its my little girls first one but now I'm sat feeling guilty for not going to see Dad yet. I've not even thought how we're all going to see him on Christmas Day yet. It's so hard.


    Sent from my iPad using Talking Point
     
  4. lin1

    lin1 Registered User

    Jan 14, 2010
    9,322
    Female
    East Kent
    #4 lin1, Dec 22, 2015
    Last edited: Dec 22, 2015
    I too am sorry you're going through this, its bad enough at anytime of year but Christmas always seemes to be harder

    The hospital has a discharge procedure they should follow and you should be involved in the meeting .
    We have a Factsheet on here about hospital discharge that should help you , I'll put it here in a mo

    In the meantime you can if you wish look around places that are local, so you get the feel of them.

    https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=173
    Also the hospital social worker should be involved
     
  5. Ozzy71

    Ozzy71 Registered User

    Nov 23, 2015
    26
    Hi
    I am so sorry this is happening to you and your dad. I am very new to this too so others will be able to give you more detailed advice but just wanted to share the help we've had and where it came from.
    Things deteriorated very quickly for my dad too at the end of November so we are working on a similar time scale. I felt bewildered, clueless, scared and as though we were expected to make decisions we knew nothing about.

    A very kind person on here directed me to the discharge policy fact sheet. Our perception at the time was that in a space of a few weeks of my dad having a stroke and developing mid stage post stroke dementia, we were being made to make a decision for ourselves on whether we could cope with dad at home or put him in care.
    I read through the discharge policy fact sheet. I also contacted the hospitals PALS ( patient liaison service) and explained our confusion and the pressure we felt we were being put under without really understanding what was happening. I also asked for a copy of the wards discharge policy. It said they have to put a care plan in place so I said we wanted to discuss this before we could think about next steps.

    At the meeting with PALS we were informed that dad had been allocated a social worker and were invited to meet with ward staff to discuss dad. Ask for a meeting as they should be able to help you with finding a place for your dad to stay as they will have an idea about the kind of care he needs.

    Dad was put in an assessment centre to see what he was able to do. This was very important as I'm not sure that a hospital ward was not a terribly helpful place for him. The staff were also able to spend more time with us and dad was assessed by occupational therapists, physiotherapists etc.

    we were are honest as we could be about what we felt was manageable and this helped the social worker to help us.

    My mum has also found that her G.P has been very helpful in following/chasing the results of assessments etc and explaining things she/we don't understand.


    Please enjoy your first Christmas with your little girl. Lots of love to you and your mum and dad. X
     
  6. Ameliasmama

    Ameliasmama Registered User

    Oct 24, 2015
    44
    Thanks for your super helpful replies. Hasn't been the best start to the day, a physiotherapist called me to get some background information on my Dad. What shocked me though was she thought my Dad lived alone which couldn't be further from the truth. After reading your reply I've contacted PALS Ozzy and a really helpful lady has got me an appointment to see the registrar who is caring for my Dad this afternoon. I know I'm going to forget what I need to ask, I always do as it's usually an information overload so I'm writing a list to see if it helps.


    Sent from my iPad using Talking Point
     
  7. canary

    canary Registered User

    Feb 25, 2014
    10,503
    Female
    South coast
    I do hope you get some answers.
    Writing a list is a good idea.
     
  8. Ameliasmama

    Ameliasmama Registered User

    Oct 24, 2015
    44
    Today hasn't been so good. Everything I wanted to ask ended up not being relevant anyway. We were told to expect a rollercoaster, I didn't think it would be like this. Dad isn't responding to the antibiotics, if anything he's worse as he's back to requiring oxygen support again. It did seem to be making him more comfortable though. His struggle with eating is leading doctors to think about the possibility of aspiration pneumonia, in which case I'm led to believe antibiotics aren't recommended?

    Regardless any plans for discharge of any kind have been shelved and it's a case of hope and wait.



    Sent from my iPad using Talking Point
     
  9. 2jays

    2jays Registered User

    Jun 4, 2010
    11,603
    West Midlands
    I'm so sorry but I have only just linked into your thread

    My mum has been in hospital and is expected to return to her care home tomorrow, after we thought she was going to be on end of life care last Friday. She too is having aspiration on top of copd and a wicked chest infection.

    So it's Christmas. Is mum going back to care home because they want to clear the beds and she's at a stage it's "safe" to discharge her or... She's medically fit so she's being discharged. Who knows. no one tells you anything you really need to know do they. It's just left up to yourself to find reasons.

    Just wanted to let you know I totally understand what you are going through. A hideous nightmare

    Have no words of wisdom on how to cope, no idea how we cope, but somehow we do.

    Holding your hand so very tight xxxxxx


    Sent from my iPhone using Talking Point
     
  10. Ameliasmama

    Ameliasmama Registered User

    Oct 24, 2015
    44
    I just wish there was a straight answer to what's going to happen, is he going to get better? But I know it's impossible to answer :(

    Sorry to hear about your mum but glad to hear she's well enough to return to her care home. I hope this doesn't seem offensive, as I wouldn't wish this nightmare on anyone but it helps to know we're not alone xxxx


    Sent from my iPad using Talking Point
     
  11. Ozzy71

    Ozzy71 Registered User

    Nov 23, 2015
    26
    I'm so sorry.
    We will hope and wait with you.
    Lots of love x
     
  12. Ameliasmama

    Ameliasmama Registered User

    Oct 24, 2015
    44
    He's somehow still clinging on. Yesterday wasn't too bad, Dad was awake when I saw him and while it's hard to make out what he's trying to say as his speech is so bad now it was nice to be able to say Merry Christmas to him and hear it back. He also managed to eat approx a quarter of his Christmas dinner which is he most he's eaten for at least 2 weeks.

    But today wasn't so good, back to pretty much out of it. Oxygen sats are terrible, down to high 70's. The nurses said he was only really awake mid morning. He did know we were there though, at one point he said 'they keep coming and telling me to go with them..... But I don't want too' which was heartbreaking. I was alone with him by this point so I'm told him to do whatever he wanted to do, but if he did decide to go wherever it is he'll be ok.

    So still a waiting game, which gets harder with everyday that passes :(


    Sent from my iPad using Talking Point
     
  13. Timeout

    Timeout Registered User

    Feb 10, 2012
    204
    Sending love and strength Ameliasmama, we are all here on TP for you xx
     
  14. Ameliasmama

    Ameliasmama Registered User

    Oct 24, 2015
    44
    This is so bloody hard :( for the past two days my dad has clearly been in pain, but due to Christmas and Bank Holidays the consultant and registrar who've been looking after him aren't there! Yesterday was bad enough, but today I've watched my Dad scream out in pain that something is 'f*****g killing him' but what he can't say. He's been curled up in a foetal position at one point and seemed to calm down, so I think it's his bottom area. He's been incontinent for over 4 weeks now and has moisture lesions so is obviously incredibly sore down there! I demanded today hey got him some pain relief, it's heartbreaking to watch him in pain, wanting to go to sleep yet can't. Thankfully the junior doctor there today agreed to administer some paracetamol til the registrar is back tomorrow. I just hope it at least takes the edge off for him.

    There was a lovely nurse there today and I explained my quandary of being he only family member with a car so all driving is down to me, and on top of that I have a partner with MS and an 11 month old daughter so I can't be there as much as I'd like. I said I know where we're heading, I'm not stupid, my Dad's given up but I would like to be with him so he's not alone when the time comes, but at the same time I physically can't be there 24/7. For once, she agreed with me. Which though I've wanted them to tell me I'm not imagining this, it was hard to hear. she said no one can pinpoint a time, much like a midwife can't predict a baby's birth, but that she didn't think were at that point just yet. She's promised me though that they'll be keeping a close eye on him, I'll be called as soon as they think I need to be there and someone will sit and hold his hand until I get there.

    So back to waiting, til tomorrow when his consultant is back and I can hopefully get my Dad the end of life care he deserves :(


    Sent from my iPad using Talking Point
     
  15. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    hi I am so sorry that you are travelling this road, both of you xxx
    Have you asked for the palliative care team? I can't believe a hospital is not giving strong pain relief to someone in your Dad's condition. The hospital will have palliative care nurses who will understand - we were not offered them and I didn't realise until too late that they existed but they do, in every hospital.
    I hope tomorrow is a better day for both of you whichever way it all goes xxxxxxxxxxxx
     
  16. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    937
    Hi Ameliasmama
    Sorry to hear what you are going through with your Dad. I was really going to say something very similar, to ask for palliative care team. Even if Dad pulls through (and sometimes they can surprise us) palliative care could still be offered and appropriate to see him while he is at this low point. They can also offer you some support . I think hospitals also have chapels and a vicar to talk things over with if this would be helpful for you.
     
  17. Ameliasmama

    Ameliasmama Registered User

    Oct 24, 2015
    44
    Palliative care wasn't needed, my Dad fell asleep peacefully last night. He waited til we'd nipped home, which in all honesty I'm finding that hard to deal with.

    Thank you for your kind wishes, I wouldn't have had a clue what was coming if it wasn't for the support I've received from talking point and I've a feeling I'm going to be relying on here a lot more these next few weeks xxx


    Sent from my iPad using Talking Point
     
  18. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,276
    Female
    near Folkestone
    So sorry about the loss of your dear dad. Plz don't find it hard as sometimes they wait until the loved ones go home. Glad it was peaceful in the end . Wishing you strength for the coming days and my deepest sympathy xxxxxx


    Sent from my iPhone using Talking Point
     
  19. canary

    canary Registered User

    Feb 25, 2014
    10,503
    Female
    South coast
    Im so sorry Ameliasmama, but Im glad he is now at peace and out of pain
    Make sure you look after yourself in the coming weeks
     
  20. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,571
    Female
    Dundee
    I'm sorry to read if your loss. I'm glad your dad is at peace now and I wish you strength for the days to come.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.