1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. betsie

    betsie Registered User

    Jun 11, 2012
    250
    My dad is still fighting.

    He hasn't had any fluid since Wednesday but is still producing urine ( it was quite dark today). Last night he stated to rattle when he was breathing. His tongue looks awful, really sore, like bits are coming off it.

    He is on morphine and some other stuff which seems to be keeping him pain free. His breathing tonight was constant but more shallow. It is so hard the not knowing when it will happen. I spend my whole time when I'm with him staring at his mouth and chest to make sure he is still breathing. I feel like I am in some horrible trance, I am so tired I keep forgetting things and going through the motions of normal living each day is getting harder but I am trying to keep it together for my children. Feel like I can't breath sometimes.
     
  2. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    526
    British Isles
    Dear Betsie you must be drained watching your poor dad. Hope you are managing to get some sleep. At least seeing that he seems pain free must bring you some small comfort at this difficult time. Thinking of you tonight, and hoping your dad remains peaceful.
     
  3. supertrooper

    supertrooper Registered User

    Jul 18, 2011
    33
    I was about to retire for the night and I thought about you. Bless you, I'm sure you are exhausted. It's not easy at the moment for you. If I can be of any comfort.. Looking back I remember being with mum as she lay there in a room full of people (strangers). Poor mum wasn't in a side room, I held her hand, I stoked her forehead, I whispered to her things about dad and other family members..

    There came a point when I seemed to know not much longer now, I thought. Mum had her eyes closed throughout, I stood up and told her how nice her hair looked and that they had done a good job at the hairdressers and said we would go for a drive if she felt up for it. (Mum hadn,t been to the hairdressers in ages she was too ill) I asked the nurse to make her a bit more comfortable and pointed out what wanted doing (this didn't go down too well with the nurse but mum needed her sheets straightening underneath her, since coming back from an x-ray hours ago).

    Whilst she was being observed/nursed I spoke to her saying that I wouldn't leave her and that I was doing a jigsaw, we've just got the outside done thanks for your help getting me the edges.(later I wanted her help with a crossword). Mostly I was too tired and I let her know I was there by holding her hand. I believe that she could hear so I simply kept her company.

    If this sounds utter rubbish, I have one more thing to say, when Mum nearly died (some years earlier) following an operation, she said that she heard everything (and she had) but couldn't communicate with anyone until she came around.

    Betsie you are doing well, watching over your children and caring also for your dad. Please know, like the others on here, I wish you well, have another big hug.
     
  4. keywest67

    keywest67 Registered User

    Mar 19, 2012
    169
    Coventry
    Betsy, this is exactly how my Dad was, we kept expecting him to go and sat watching his breathing for endless hours, it took 9 days, the body is resilient , in the end after us all sitting with him for days he died just after we had left the room, I don't think he wanted us to see his final breath. My Dads mouth and tongue was horrible, the nurses would come and give him oral hygiene to clear it and you can soak a cotton bud in water to wet the lips a little, sorry your going through this it's so horrible, thinking of youx
     
  5. Angel Eyes

    Angel Eyes Registered User

    Mar 3, 2015
    25
    I am going through exactly the same with my dad. He was admitted to hospital 5 weeks ago following a fall at home. He contracted a chest infection and was treated with IV antibiotics. He has hardly eaten since admission and the doctors spoke to me on Thursday 19th Feb to say there was little more that they could do for dad who was by then neither eating or drinking. He had been on IV fluids but these were to be withdrawn. I was told he could well pass away that weekend. On the Monday when he was still alive the doctor called again to say they wanted to move him to a nursing home but I said I didnt think it was right to disorientate him further for just a day or 2. Another week has passed and dad is still with us. Some days he is sitting up and chatting and others does nothing but sleep. It is so draining and I feel I have let him down by not allowing him to move to home/hospice care. I just dont know what to do and like you I just keep randomly crying. i am so sorry you are going through this too x
     
  6. roseg

    roseg Registered User

    Jan 25, 2015
    26
    hi betsie i just read your post and my heart sank i lost my mummy a week ago . She was exactly like your poor dad im so sorry. Its a horrible thing to watch n it will get more distressing for you. My mummy died last monday im devastated she was only 55 ive just had a baby. I know how hard it is my mummy lasted six weeks without food and full two weeks without water as the hospital took the fluids down cos she wasnt getting better. She beat the pneumonia but it came back cos she was constantly in bed. My only advice is to tell your dad he isnt alone and how much you love him. Im sitting here devastated cos i just want my mummy. I will pray for your dad and your family. I will tell you this stage will be the hardest to deal with because you will feel so helpless that you are watching him slip away. My heart goes out to you xx
     
  7. Ladybird23

    Ladybird23 Registered User

    Feb 28, 2014
    130
    To all of us that are suffering at this time, lets hold all our hands together.

    My dad is in the last stages now, not eating and drinking enough. We visited him on Saturday and Sunday and on both occasions I told him to go and join Mum, it was alright to let go and I would look after the rest of my family. He was fast asleep but I swear he muttered "alright then" on Sunday.
    It is only time now when the CH ring to say come up and be with him.

    I will miss him so much, but he will be with my Mum and out of suffering.
     
  8. betsie

    betsie Registered User

    Jun 11, 2012
    250
    I would say it was nice too know I am not alone, but I hate to think of others going through this pain.
    I have just got back from the hospital, I left my mum and sister with dad. He is so weak now, he did open his eyes a few times but they are very cloudy and glassy looking. He is in a ward of 6 in hospital too. I don't mind this as he has always been a noise ointment so he would like the noise of others talking and general goings on.
    He doesn't appear to be in pain, only moans when they move him or change his position. I find it really hard when I first arrive to see him, I then pull myself together until I have to leave. Every time I go I think will this be the last time I get to see him and give him a kiss.
    As much as I want him to be with me forever, I hate seeing him like this it seems so cruel, I just pray all our loved ones feel no pain and do not realise what is happening too them.
    Wishing you all love and the strength to carry on and support our loved ones until the end.
     
  9. chrisdee

    chrisdee Registered User

    Nov 23, 2014
    171
    Yorkshire
    Dear Betsie, Angel Eyes, Ladybird. May I join and hold hands for a while too?
    My Mum is in the Nursing Home and on end of life care since Friday 27 Feb. Struggles to open her eyes now, but can shift about in bed a little, hardly drinking, says little and mainly incoherent. Suck a struggle as we are a small family, just brother, my husband and me. And my West Highland Terrier who said his goodbyes on Saturday, placed on the bed and gave her lots of kisses. He hardly leaves my side now.
     
  10. betsie

    betsie Registered User

    Jun 11, 2012
    250
    Yesterday was a bad day. Dad was the most alert he has been for days looking round, trying to talk (could not really hear him) and he was stroking my hand he also managed to give me a little smile. It broke my heart. My sister thinks he was saying goodbye. I told him he was going to see all his brothers and sisters and his mum and dad very soon and that me and my sisters would look after mum.
    I spent the whole day in tears. It really took it out of me . I woke up at 2am feeling very sick and on the way to the loo I fainted. I am assuming it's all the stress hormones in my body.
    Today is another day, I need to compose my self and be strong for dad.
    Sending everyone love at this awful time. Xx
     
  11. supertrooper

    supertrooper Registered User

    Jul 18, 2011
    33
    Dear Betsie, I hope you can feel my arms around you, you are clearly exhausted.
    How wonderful to know your dad had a smile for you and that he had the strength. He must be tired too. You are doing well, I'm sorry that you feel weak, try to eat something, crumpets, teacakes a sandwich springs to mind just eat what you like and try to get stronger. This is an awful time for you, stay strong we are holding your hand and pulling you through. With love and support.
     
  12. keywest67

    keywest67 Registered User

    Mar 19, 2012
    169
    Coventry
    Betsie, keep strong, you are doing an amazing job, I have to say my Dad was more alert the day before he passed away which I found difficult to deal with and yes I did loose it and break down a few times, it's to be expected..........your going through the worst time and I feel for you, take care x
     
  13. betsie

    betsie Registered User

    Jun 11, 2012
    250
    Dad is still fighting, 13 days now without any fluids. The palliative nurse said the human will is very strong and asked if their was someone who hasn't visited who he could be waiting to see. I can't think of anyone, he has one brother who is still alive but he hasn't seen him for about 7 yrs and he is too ill himself to visit.

    On Sunday I took my mum up to the hospital to see him. It was awful, she collapsed and I thought she was having a stroke, her teeth came out, she wet herself and she was totally out for it. The nurse took her vitals and said her bp and pulse were very low. She came too and was fine ( after 4 hrs in A&e they said she had fainted). At one point I did have to laugh, the bed opposite dad was empty so they lay mum in that, me and my sister were stood in the middle of the two not knowing who to sit with and dad had his eyes open, I'm sure he was wondering what was going on but my mum did always like the limelight!!!

    Another day to get through, I don't think it will be long now. He was much worse last night, breathing from his stomach and it felt like he was gasping for every breath. He is so full of gunk you can hear it with every breath. I was so upset it was so hard watching him. I find it hard to accept that this is the right way to let our loved ones die, it seems so cruel.
     
  14. Ladybird23

    Ladybird23 Registered User

    Feb 28, 2014
    130
    Betsie

    So hard we know, my thoughts are with you as I am not far off this stage myself.
    It is so cruel to see our loved ones go through this, I have cried and cried and cried in my own heart.

    To everyone who has loved ones near the end, we all hold hands.
     
  15. flowerpetals

    flowerpetals Registered User

    Mar 6, 2015
    30
    Dear Betsie and everyone else going through this heartbreaking time. My heart goes out to you all, it's a devastating time, just so painful, so sad.

    I hope for you that you have the strength to get through these dark days. It is hard and a very cruel part of our life journey. Nothing makes sense. No words comfort.

    Thinking of you all and hoping that your loved ones stay peaceful.
     
  16. Ladybird23

    Ladybird23 Registered User

    Feb 28, 2014
    130
    Flowerpetals

    Thank you so much for your kind words.
     
  17. LittleFeet74

    LittleFeet74 Registered User

    Aug 30, 2014
    14
    So sorry Betsie, I am crying reading your post as we are here too. Dad had a fall 3 weeks ago, broke his neck, had surgery but now he is not responding well. The Dr's want to have a meeting with us tomorrow about what they are going to do. They have indicated that it might be time to make him comfortable. He is still being fed through a tube and they are not keen to put one in his stomach. He still can't swallow following surgery. He also has a chest infection, and his mouth and lips are always dry and sore. He had a lovely young nurse the other day who cleaned his mouth really gently and took care of him, I was so moved by how tender she was. I am also crying throughout the day and trying not to in front of my son. I feel like they're giving up on Dad, maybe I'm in denial. I don't want him to suffer but it feels too soon, I feel broken.
     
  18. betsie

    betsie Registered User

    Jun 11, 2012
    250
    I know how hard it is to accept that it is time too let our loved ones go. I think when they loose their ability to swallow it really is a sign they have had enough.
    Our instinct is to give those we love food and water and withdrawing that seems so cruel but in reality it is what their body wants. We just prolong their agony by our artificial interventions.
    All I can say is to think what your dad would say if he could make the choice. Would he want to be kept alive at any cost or allowed to go when his body has had enough.

    if you and the doctors do decide to withdraw the drip you can still offer your dad drinks via a straw ( my dad forgot how to suck to) but if he has forgotten how to swallow and is in the later stages of alzhiemers I think it rarely comes back and he will just let the liquid pool in his mouth and choke. Ask for the palliative team to assess him and get the right pain relief sorted. A syringe driver is normally put in which delivers pain relief 24 hrs a day, plus morphine injections when needed. Make sure he is turned every few hours to avoid sores and use sponge sticks to moisten his mouth and Vaseline for his lips.

    The Dr was keen to send my dad back to the care home but the palliative nurse said no. I am so glad she did as I know he would not have had the same pain relief and care in the home. He is turned every 3 hrs and if I see he is in pain they give him morphine injections straight away, I know this wouldn't happen in the care home.

    It is the hardest thing we have to do but be there as much as you can, hold his hand, stroke his face, tell him you love him and talk about anything and everything even if you think he is asleep. Make the most of any time he is awake and aware of you.

    Do what you know is best for your dad, this might go against everything your heart is telling you but sometimes the hardest decisions we make are the right ones.
     
  19. betsie

    betsie Registered User

    Jun 11, 2012
    250
    Dad died this afternoon, 19 days after all fluids were stopped and 4 weeks since he had eaten anything. I had left to pick my daughter up from school when he died.
    I knew it would be today when I saw him this morning it was awful. He had been sick, was gasping for air, full of fluid in his throat and his eyes were rolled back in his head. His fingers had also started to go blue. I just hope I can get this last picture of him out if my head. I can not work out how this is the right way to let people die. The last 19 days have been horrendous, I do not understand why it would have been wrong to help him on his way to peace sooner.

    I send my love and support to everyone on Talking Point. Unfortunately my journey with Alzheimer's is not over as my mum was diagnosed 2 years ago, she is coping ok at home at the moment, I just hope my dads death doesn't cause her to decline.
     
  20. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,061
    Toronto, Canada
    Betsie, I am so sorry about the loss of your father. I wish it could have been more peaceful for him and your family. My condolences to everyone.
     

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