1. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    I wanted to thank you for your very personal and honest post, @treelife. While a difficult topic, it is worth discussing, and I appreciate you being willing to share your story in the kind and generous hope that others need not repeat your experience. There is not enough general awareness of dementia and related issues, and it takes courage to speak up, and I applaud that. Thank you.
  2. Contadina

    Contadina New member

    Apr 12, 2018
    Firstly, sorry for your loss and it may sound trite to say, but take comfort that your father is no longer suffering.

    My father, who had dementia and Parkinsons, was admitted to hospital when he was having trouble swallowing. Tests showed this was unlikely to improve and we were called to discuss his options. The doctors did not try to sway our decision in any way, but they explained the facts to us to help us explain things to our father and reach a decision. As dad always insisted on do not resuscitate, we viewed PEG as something that would just delay the inevitable and definitely not improve his quality of life in any way. The doctors said even if we did PEG feed him he could still get aspiration pneumonia as saliva could still enter his lungs.

    I'm so pleased we decided against PEG as dad slipped away peacefully a few days later.
  3. treelife

    treelife Registered User

    Mar 24, 2018
    Thankyou for your comments Contadina.Not contrite at all,it was a relief after 20 months! I'm very pleased to hear you had options and choices to make and that your Father's end of life was peaceful..We were not given a choice with my Father,despite the whole family not wanting the PEG fitted which is why I have felt the need to tell our experiences via the professionals that made the decisions in the first place,in the hope that this situation would be carefully discussed and families listened to before action in the future.Having the PEG fitted impacted massively both physically and ethically on both my Father and us,his family. A peaceful end of life should be a right of passage if possible.
  4. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    I can only imagine how having the peg fitted distressed your father and family. At end of life in hospital before dad was sent back to his NH...the right and kindest decision...I had to hold dad down so a catheter could be fitted..twice...I never imagined ever having to do that for a parent and it was so distressing for dad and me...however in that case it was a medical need to make him more comfortable and totally appropriately necessary for his last couple of weeks care. I am so sorry your dad and family had to go through different circumstances
  5. Islay

    Islay Registered User

    Apr 9, 2018
    Thank you so much for sharing this story, and I am sure it will help many readers on this site. Just feel so sad that you had to experience what you did.

    I had been pondering leg feeding for so long, but after researching, decided that for us as a family, we would have to make the decision to insert the peg, which itself poses risks. Mam wouldn’t be able to communicate if it was causing pain, and then we would have to make the decision at some point to stop the feeds. We have been so lucky in that an ‘at home’ hospital service is available where we live. 2 incredibly kind ladies came out and wrote an Arbid, which although not legally binding, does state family wishes (we only have poa for finance, not health), and is shared with gp, go out of hours, and the local ambulance service, along with her dnacpr. It states that hospital admission would only be for a reversible cause (eg a recent tooth infection for iv antibiotics), and that she is to be returned straight home after treatment, where the at home service will continue any short term medication required. It states she won’t go into hospital if she has a stroke or heart attack, as the medical staff wouldn’t operate anyway in this circumstance. She is on end of life care pathway, and we have submitted a request via this team for a ‘just in case’ box, that contains injections for very end stage care to make her comfortable. It contains pain relief, something to calm her if she gets anxious, and something to clear secretions from her mouth when swallow finally goes. Paramedics and district nurses can access this box, should we ever require it.
    This illness takes so much from our loved ones, and I just wish there was more information sharing and understanding from gp’s.

    When I asked my own gp about palliative care, he said he didn’t think there was anything for Alzheimer’s patients; that Macmillan etc was just for cancer patients. Thankfully an advanced paramedic practitioner told us about the at home service, and they got in touch with our gp.

    I know what coming, and wanted to do anything I could to protect mam from suffering, and Dad from not having access to support. Thankfully though we have found help and been supported.

    Take care, gentle hugs. x
  6. treelife

    treelife Registered User

    Mar 24, 2018
    Very pleased to hear that you have been listened to and supported,thank you for telling your experience.Maybe my Father and our family were just very unfortunate,wrong place,wrong time,consultants under too much pressure etc etc.But once PEG was fitted,there was never going to be a PEG reversal and he never was put on the 'just incase' drugs at the end of his life after 20 months of an impossible position. It's all so very sad and frustrating for us,but it is good to hear it is maybe not a common experience. We have all now put a health POA in place as these things can happen at any time,and I urge anyone else to do the same for peace of mind.
  7. Em1980

    Em1980 New member

    May 13, 2018
    Sorry @treelife to read about the struggles.

    I've rejoined this forum after a few years as my Mum has early onset dementia, she's only 59 and in late stage. She went into hospital on 1st May from her absolutely fantastic home where she has a supported flat. She'd been unwell since about mid April when the GP visited and said she had a virus, so gave antibiotics. Her chest was clear and no cough. But she didn't seem to pick up again and appetite was variable, same with drink. She's on a pureed diet and has always had a good appetite but she started holding food in mouth and spitting it out. Then one evening she was being helped to bed and carer tested pulse and oxygen, her saturation vwas dropping and pulse heading to 150bpm. They called an ambulance and we dashed there from over an hour away, I've never seen her look so sick, turns out it was aspiration pneumonia (again). They didn't think she'd last the night. But she did, and has been given excellent care in hospital with strong antibiotics, paracetamol as needed, was on ventilator for first few days, weaned off now.

    But she's been having seizures, which they'd suspected at her home. She had three seizures last night, and sodium valporate has been increased.

    She's also had a nasal feeding tube in place since moving to respiratory ward as she was too poorly to eat. Speech and language therapist seeing her every day, but I was there on Friday and they say my Mum has a weak swallow but not enough to start usual diet again. I'm worried about what will happen next, I don't think my Mum would want a PEG tube fitted and for quality of life I hope she can continue to eat. But what if she can't take in enough nutrition by mouth? I just don't know what to do. I know in the early years of the dementia starting she was in a different hospital and trying to stuff tissues in her mouth or putting a bag over her head saying she wanted to die. But the place I got her in to is fantastic and she's been content there, it's the best things can be considering. I wish we'd talked about what she would want before it got to know, when she can't tell me what to do for the best.

    I'm an only child (albeit 37) with no other living relatives, so it is hardgoing. My poor Mum is in hospital over an hour away from where I live, and is whinging, whiny noises, when I've been there the three times this week. My work have been very supportive but I work f/t and am struggling. I want to be at the hospital to quiz Doctors and to get her home to her supported flat once she's well enough. I've been fighting for my Mum since 2011 when she was diagosed with early onset, and she moved to the great place in 2012.

    It's all so sad. She was such an independent woman who brought me up as a single parent, with help from my Grandad. It wasn't all plain sailing by any means, but she's my Mum and I want what's best for her. I haven't been pressured re PEG feed for her but fear that if her swallow doesn't improve there's little other choice. Just wish I knew what she'd want me to do.
  8. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Hello @Em1980 I am so sorry to hear about your mum

    I think it is time to have a very frank and open talk with the doctors at the hospital.

    Once they are at the stage of the swallow failing and recurrent aspiration pneumonia you are looking at end-stages and you could well be looking at end of life, Im sorry to say. When people with dementia reach end of life their organs start slowly closing down and they cannot process food, so they start to reject it and spit it out. They dont die because they arent getting the nutrition - they are not eating because they are already dying. PEG feeding simply prolongs the process; it also doesnt stop the aspiration pneumonia as you can still get this from saliva going into the lungs.
  9. treelife

    treelife Registered User

    Mar 24, 2018
    Hi Em.yes I agree with previous reply.in my father's case they fitted the PEG due to his stroke and not the dementia.his life was prolonged unecessarily due to PEG as they wouldnt remove it.we felt he was rejecting the peg feed due to his dementia as it is well documented that end stage dementia patients lose swallow reflex and don't feel hunger.it is sadly the way end of life dementia goes.i think it is time to have open discussion with team,I doubt PEG will be offered in your mum's case,and if you aren't happy with options you are entitled to second opinion and not have to rush things.our father was very clear on his wishes and I had siblings and family for support,but very distressingly,we weren'tdidnt feel we were listened to and they just needed the bed.a nursing home will not take nasal fed patients but,as i said,it's really not heard of to fit PEGs to end of life dementia patients.hope this forum helps you talk things through as you are on your own.very hard to juggle life work and visits so a pkanned meeting is better than turning up and hoping consultant is available.good luck,and keep us posted.
  10. treelife

    treelife Registered User

    Mar 24, 2018
    Just an update from my previous posts re my Father and his/our struggle with "pEG" fed end of life care.
    I have had meetings with the end of life consultant and someone from "patient experience" to tell our story to. The outcome is,that,from april this year,2018, all patients that are possibly needing "PEG" insertion must have at least 2 consultants to discuss options with family along with a multidisciplinary team before final decisions are made. I quote

    "Since April 2018 the decision making process for all PEG feeding tubes has been improved, with now 1 or 2 best interests decision meetings to which families and clinicians are invited. This is to ensure a multi-disciplinary approach to the initial decision to insert a PEG tube.

    - The results of a recent ‘Listening into Action’ session for Stroke has resulted in a change to the communication with patients and families on the stroke ward. This is focussing on i) Improved access for families to speak to doctors on the ward ii) Better lines of communication with family members and iii) A review of the Stroke MDT process."

    Although this is a positive outcome to my meetings,I do think this was already in place but wasn't actioned in my Father's case because the pressure need for his hospital bed out weighed the "best interest" process at the time.
    Our family had a very strong case for taking this further,and "they" knew this so,all along they have been extremely guarded with what they have said however much we impressed on them that this was never going to be the case as our Father would not have wanted that,and it's not what we,as a family ,are about. Time for us to move on from this,(although it is proving very hard) hope that it never happens to anyone else,and concentrate on reliving happier memories
  11. Jaycee14a

    Jaycee14a New member

    Aug 27, 2019
    My mum has been in hospital just over 3 weeks now with a stroke, she is being fed by a nasal tube but is begging me for food and drink every time I go, she has dementia and so I cannot explain why she can’t eat normally, she doesn’t understand that she could choke, it’s breaking my heart to see her deprived of food and not being able to even have a cup of tea which she’s desperate for, I dread going to see her every day and her being so distressed and upset, it’s torture for her and for me.
  12. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    Hello @Jaycee14a
    It must be very difficult to see your Mum in so much distress and discomfort is there any way the medics can medicate her to stop her being so distressed?

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