Stuggling to Swallow - good days & bad - how longs left?

Discussion in 'End of life care' started by Sunflower10, Apr 3, 2015.

  1. Sunflower10

    Sunflower10 Registered User

    Feb 9, 2010
    27
    Bristol
    I am after some guidance on how long this phase may last. I have not written a post for a few years as my dear mum has been being cared for in a lovely care home for the last 3 years whilst her condition has steadily deteriorated. My mum is now 65 and having suffered from Early Onset Alzheimers for approximately 12 years she is now in the very end stages. Mum is now completely bedridden and unable to do anything at all for herself. She is now receiving palliative care and being kept as comfortable as possible. For the last few months she has had trouble eating and drinking, she pouches her food and seems unaware that she even has food in her mouth. This has got worse and some days she seems unable to swallow at all. Then the following day she is able to swallow reasonably ok and is able to consume her food or drink. (she is on pureed food). She is losing weight and I guess that she is currently able to consume enough to keep her alive. Does anyone have any idea how long this final stage could last? (I know it is a bit like - how long is a piece of string). For the first time in this horrible disease I wish my mum would 'go to sleep'. I hate the thought of watching her reduce to skin and bone and she has no quality of life. She has fought this disease for many years and is still clinging to life. Could this stage last for many months or is the very last stage any quicker? Any advice gratefully received. x
     
  2. lin1

    lin1 Registered User

    Jan 14, 2010
    9,322
    Female
    East Kent
    I am sorry to hear about your Mum. I am also sorry that I don't think anyone can really say how long.
    This is such a cruel disease. I do feel for you((((((HUG))))))
     
  3. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,967
    Brixham Devon
    I'm so sorry that you have to watch your Mum go through this-it's truly horrible and cruel, especially as your Mum is so young.

    I don't think anyone can give you a definite answer to your question. My late husband was 68 when he died and he too went through days of not eating-but mainly he did eat the pureed food.Some days he kept the food in his mouth. Actually, I had just fed him a full lunch minutes before he died. Pete was like this for many months before he passed away.

    I'm sorry this is no help what so ever-you have my sympathy and understanding.

    Love,

    Lyn T XX
     
  4. miffygirl

    miffygirl Registered User

    Jun 29, 2012
    4
    Hi Sunflower. I really identified with what you said as my mum is now at this stage too and this is exactly what I have been thinking recently. Mum is 67 and has had Prefrontal dementia for about 10 years. Up til now there has been some recognition and communication, but she recently had a small stroke and since then is not able to eat properly, can't walk unaided and gives an occasional whispered "yes" or a smile. This is awful, she is literally fading away and i don't want this to drag on and on, she wouldn't want it either. I know no one can give us answers, and I have no answers to give you I'm afraid, but I just wanted you to know that you are not alone.
     
  5. Sunflower10

    Sunflower10 Registered User

    Feb 9, 2010
    27
    Bristol
    Thank you for your replies. I know I am asking the 'million dollar question' that nobody knows the answer to. Each stage with my mum has been very slow and lasted a long time and this final stage may be the same. I think time will tell with my mum how she goes over the next few weeks / months and how much food she can consume. The thing with my mum is that apart from the Alzheimers her body and organs are relatively young, strong and healthy. She has fought this battle for so long with such courage and dignity that it is horrible to see her decline drag on further. Thank you all again. It is comforting to know that we are not going through this alone. x
     
  6. clareglen

    clareglen Registered User

    Jul 9, 2013
    325
    Cumbria
    It's awful. I think it's worse than cancer & my dad died from cancer & I've had it. I think there's a time frame with cancer that can be predicted, but there seems not with dementia. My mum is in hospital sleeps all the time hasn't eaten in that time. I asked for food drip to be stopped. She can't even move her tongue never mind swallow. Just sleeps, but her obs, heart/blood pressure all in the normal levels.
     
  7. Whodathought

    Whodathought Registered User

    Nov 6, 2013
    7
    Wits' End
    Unable to swallow food or water.

    6 days. Dad died 10pm Good Friday.
    Good luck with Mum.
    It's a shame Alzheimer's sufferers are so strong, they have to endure the torture for too long.
    One down one to go, my Mum is suffering it too.
     
  8. flower1

    flower1 Registered User

    Apr 12, 2013
    124
    I can understand your frustration as I have to agree with you about how long is a piece of string?? My mum is in the late/severe stage of Vascular Dementia, fifth year now and we have had our scares along the way of this cruel journey. She can no longer walk, talk, totally immobile, incontinent, fed softened diet with assistance but has not had a dramatic weight loss (but she is having 24 hour care in every way in her nursing home). I always too want to know how long will this go on for but nobody can ever answer that question and then you think well how cruel !! I understand your heartache over this and I was told that when Mum finally stops eating/swallowing then it will be end of life care. At the moment she is eating/swallowing with assistance but keeps coughing and they have told me the reflux is declining but then I wanted to know how long does this take or go on for but nobody could answer that either? I always say that although cancer is such a cruel disease too they give you a approx. time span to prepare yourself where as this horrible disease it can carry on for years and the suffering for those who are battling it but also for poor relatives watching it or caring for their loved ones. Would we let an animal suffer like this - no (we would be arrested for cruelty!!). I wish you strength for the days ahead xx
     
  9. SandraBetty

    SandraBetty Registered User

    Apr 4, 2015
    5
    Things like this bring a dull heavy ache in the middle if the chest. It's just awful. Why is there a disease like this? The negative aspect of this is that at just 65 years the person is expected to be significantly stronger than someone of say, 85 who has far more frailty in their body. In my experience people who are physically more robust because they are younger can take one to two weeks to pass away. In this case it is advisable to discuss with the go and home staff about the introduction of a syringe driver to give continuous diamorphine and midazolam so there is guaranteed symptom management. On the positive side, I have never really observed any real evidence if distress due to not eating and drinking. Many fear the 'starvation or thirst' potential but I really don't think it's there. It could be that it's switched off as if the body knows the swallow is gone and signals to the brain are effectively switched off. I have seen some problems with dryness inside the mouth. This should really by addressed with hourly oral care religiously. Use of saliva replacements. Keep lips moist. Encourage head position so the mouth isn't naturally falling into the open position for any length of time. Lots can be done to ensure the loss of swallow doesn't become an issue. Care pathway will make sure that staff are following a sturdy plan and eradication of any uncomfortable symptoms is key. Good Luck
     
  10. WIFE

    WIFE Registered User

    May 23, 2014
    857
    WEST SUSSEX
    All too soon they are "gone" - try to derive some peace and sharing from the time you have left with your loved ones. No-one likes to witness suffering especially in someone well-loved but they and their poor battered body will make the decision when the time is right. Loving thoughts WIFE
     
  11. Sunflower10

    Sunflower10 Registered User

    Feb 9, 2010
    27
    Bristol
    Well things have started to get worse with mum. This week has had alot of tears shed already. Mum hasn't eaten anything now for about 4 or 5 days having lost the ability to swallow food. The home are continuing to encourage fluids but we are literally only getting a couple of sips down each day. I can't imagine she will live much longer like this. It is so horrible to witness this. I just want the end to be quick and then I feel bad wishing her away as I equally want to hold on to her forever. I am visiting each day and will sit with her tomorrow again, God willing. Hopefully I will find some strength for the next few days whatever they may bring. I feel emotionally drained already, what a roller coaster this journey is. X


    Sent from my iPhone using Talking Point
     
  12. clareglen

    clareglen Registered User

    Jul 9, 2013
    325
    Cumbria
    I'm in the same position but mum is in hospital. Hasn't eaten anything for over 5 weeks apart from a little ice cream I fed her twice & the horrible liquid food they put in by ng tube which she sicked up, but nothing to eat for a couple of weeks now. She's just on gentle fluid into her flesh, as opposed to a vein. They told me this keeps her comfortable but I might question it. Like you I keep going & sitting for hours & wondering when. Mum looks quite good colour wise, a bit flushed today, so wondering if another infection has taken hold, which they won't treat this time & her hands have swollen which is a sign. Hope she holds on til I'm there tomorrow. I assume they'll ring me if it's imminent. Dr told me that those who have strong hearts etc even though neurologically bad tend to physiologically linger.
     
  13. tinap

    tinap Registered User

    Nov 2, 2014
    41
    west midlands
    Sending you strength and hugs.... My own precious mom only passed on Monday and I went through exactly what you are now so my heart goes out to you. Hold her hand tell her everything you need to say and take strength from knowing your with her every last minute is a gift. Thinking of you xx
     
  14. clareglen

    clareglen Registered User

    Jul 9, 2013
    325
    Cumbria
    Thank you. I think sudden death, although a shock, is better. My husband's mum was in a care home, woke up, buzzed, owner nurse came, mum said she didn't feel well, nurse said she'd phone the Dr & held her in her arms & she died really quickly before Dr got there, heart gave out. My dad died of cancer & was a horrible death too. So both my parents had a slow death although maybe they are not conscious of the time as we are.
     
  15. tinap

    tinap Registered User

    Nov 2, 2014
    41
    west midlands
    I prayed for mom to not suffer as like you my dad died from cancer but that was not to be, it's the most awful thing to watch someone you love slowly going in front of you. Cancer is a terrible disease but dementia takes the person they were first then leaves you to watch as the the body as to go too. Mom had many health problems but it was the infections which finally took her. When they asked me about dnr withdrawal of medication I felt at the time I was signing her life away but yesterday someone told me it was the most unselfish thing I could do because by keep letting them treat her was making her suffering longer because I didn't want her to go, I still didn't want her to leave me but she was so weak and frail with no quality of life which I know she would have hated
    hated. She held on for five weeks with very little food was so thin it was horrible to watch but those weeks gave me precious quality time of just me and her as I sat each day with her. There is nothing no can say to ease your pain but we do truly understand what your going through. Being able to talk to others on here really helps, even just reading through if not commenting as helped to no your not alone because that's how you feel at times. Sending you much love and strength. Tina xxx
     

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