Coughing after drinking in last/severe stage vascular Dementia

Discussion in 'Middle - later stages of dementia' started by flower1, Jan 9, 2015.

  1. flower1

    flower1 Registered User

    Apr 12, 2013
    124
    I have been to visit my mum in her nursing home today and have now been told that she is not having tea (thickened) anymore as will not drink it. Instead they are giving her blackcurrant juice which is thickened (to an almost syrup style). I helped give this to Mum (off a spoon as instructed) but noticed after every couple of swallows she started coughing everytime and went red in face and I could hear a loud chest noise/heavy breathing going. I asked was this normal and just told this is how it is now with your Mum. My question is which did not get answered is this the swallowing reflux getting worse and will it keep getting harder for my mum to swallow with this regular pattern of coughing after it. She is approaching her 5th year of vascular dementia and I have been told mum in last/severe stage (immobile, doubly incontinent, liquid meds, very odd word speech, glazed look, sleeping more but not end of life except I have to keep signing this end of life paperwork at nursing home? She is not frail her weight seems to have maintained but to me does look physically different especially her face which is more hollow and drawn now. Thank you for reading and any feedback much appreciated because I don't always have anybody else to speak with who will understand. xx
     
  2. keywest67

    keywest67 Registered User

    Mar 19, 2012
    169
    Coventry
    Hi Flower1,

    I can only advise on my own experience with my Dad and your Mum sounds virtually in an identical stage to how he was last Nov, he kept coughing when taking drinks, he then got aspiration pneumonia because the drink went onto the lungs and causes an infection so it is a concern however I think this is often how the illness progresses, my Dad had Alzheimer's and vascular dementia, it's very hard to watch them go through this isn't it, I do feel for you
     
  3. flower1

    flower1 Registered User

    Apr 12, 2013
    124
    Hi keywest67, firstly thank you for taking the time to reply to me. I appreciate your feedback and agree that the aspiration pneumonia must be a high risk at this stage, I am sorry about the passing of your Dad and hope all is ok with you. I start to feel now whether my Mum could be nearing the final months stage if this is happening now on a regular basis and wonder if it would be a good idea for me to chat with her doctor if I cannot get the answers from her nursing home or is it just best to let it run it's cause, so hard because no matter what I do not want my Mum to suffer or be in pain xx
     
  4. keywest67

    keywest67 Registered User

    Mar 19, 2012
    169
    Coventry
    Hi,

    Thankyou for your kind words, yes I'm getting by day by day thankyou.....to be honest over the past 3years since Dads diagnosis of Dementia it's felt like a long goodbye and it was like Dad slowly faded away from us, although his death was traumatic I now am starting to feel a sense of relief I don't have to see him in such an awful way and he is at peace.

    Yes I think it would be a good idea to speak to your Mums Doctor, we found it very difficult to speak to Dads Doctor in the care home, I would almost say thinking about it they were reluctant in getting the GP to speak to us directly, I got the most honest view of Dads prognosis from the Consultants when he went into hospital which was a number of occasions in the months leading up to his death.
    Ultimately they are not able to do anything when it gets to final stage, and we basically have no option but to let it run its course, I think as long as your Mum is comfortable and not distressed it's the best you can expect, they advised me against having a feeding tube for Dad towards the end......I basically agreed as I cannot see the benefit to anyone in prolonging the life for someone who has no capabilities or quality of life, I think it's just prolonging the agony.
    Sorry, it's such a depressing subject isn't it , wishing strength for you in the difficult times ahead.
     
  5. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,156
    Toronto, Canada
    My mother has also been having coughing problem after liquids. Her liquids are now what they call 'honey thick' and it has helped a great deal. Unfortunately, this is simply a progression of the disease. Mum has been on thickened fluids for some months now and I am confident she will be with us for some time.

    Perhaps they need to thicken your mother's fluids a bit more? It wouldn't hurt to ask, and I agree with keywest that it would be a good idea to speak to your mother's doctor.
     
  6. flower1

    flower1 Registered User

    Apr 12, 2013
    124
    Thank you for your reply and advice Canadian Joanne. I will make an appointment for a review with my Mum's doctor hopefully this way I can get a more detailed prognosis for Mum to help put my mind at rest. Good luck with your Mum too in the months ahead x
     
  7. flower1

    flower1 Registered User

    Apr 12, 2013
    124
    Thank you for your second reply, I do find this very helpful as you have been through this journey and will understand. I am going to make an appointment with my Mum's doctor so I can speak with him personally about Mum. I just hope that Mum does not go on and on with this as from what I can see the more it prolongs the worse it gets. What I do understand is that also I have no control either (to a certain degree) and have to go with it even though your heart is so sad inside. Thank you xx
     
  8. Gold

    Gold New member

    Feb 6, 2018
    1
     
  9. Kikki21

    Kikki21 Registered User

    Feb 27, 2016
    2,112
    Female
    East Midlands
    When my mum first went into hospital after she had a big seizure & then several smaller ones, her swallow was affected & she would cough incessantly but the SALT team checked her out twice & couldn’t find an issue.

    Her coughing has now eased so it could have been the remnants of her chest infection that she had had. Her eating has diminished though & she is also in the later stages of vascular dementia & Alzheimers. In fact, her consultant told us that her life expectancy could be measured in terms of weeks & months.
     
  10. TAP

    TAP Registered User

    Jul 23, 2015
    5
    Hello all
    I've been a member for a little while but rarely posted anything.
    Dad is in the later stages of Mixed Alzheimers with Vas Dementia (diagnosed in mid 2015). Cannot talk, no mobility, double incontinent etc (just as 'flower1' described). Dad is still in the family home. I spend every moment of the dad (when I am not in full time work) at my parents - mum looks after him the rest of the time. Dad has been under the care of SALT for some time and now on 4 scoops of the Resource thicken up powder and on pureed meals (been on pureed meals for some time). Dad has coughed from time to time and of course aware of his swallowing difficulties and chance for food/drink to go on his chest. Doc was out a few weeks ago and sounded his chest - no infection (also has indwelling catheter as had bladder cancer as well in 2015!) For the last two weeks, dad's coughing is very bad more so, and strangely at night. Whether he is layed down or sat up at night still coughs when at times then converts into bad choking. Dad has also started to hiccup a lot (does have a hernia though). By the sounds of the other posts doesn't seem there is much we can do? Just part of the worsening progression of the disease. We are awaiting for a call back from SALT, may well need to increase the powder for the fluids but as Dad is on pureed meals not much more can do apart from feeding tube. I do not want to go down that route what so every but I think mum would! On Saturday night particularly bad with the coughing as it literally lasted all night but during the next day ok and then bad again Sunday night!! Does anyone now if there if anything that can help with the coughing? (As dad never wanted to go on medication Dad never sees medic about his conditions only the GP who is no an expert). Thank you in advance for any advice you can share.
     
  11. AliceA

    AliceA Registered User

    May 27, 2016
    2,518
    Almost identical to my husband. Domperidone helped with hiccups, he had these for 6 weeks even while in hospital for three of these. GP eventually found he had some years ago. 10mg.
    Other symptoms are very similar.
    Re peg feeding. We have made a decision about this. May be worth doing a bit of research as to the pros and cons, with special reference to dementia. Whether the tube would be pulled out for instance.
    Since returning from 3week stay for chest infection we have just dealt with another at home.
    Purees and thickened drinks can have limitations too.
    I know how your Mum feels, but sometimes we have to weigh up the impossible. X
     
  12. ladysuisei

    ladysuisei Registered User

    Nov 13, 2019
    19
    Hello there- my mother is sadly at the last stage. She was diagnosed 13 years ago, and has been cared for at home. It is terrifying every time we attempt to give any food or particularly drink. It results in obvious distress for my mum, who is already heavily sedated and never fully awake any more. We have a SALT visit tomorrow- this is a daunting prospect, as I know the many dangers present when attempting any nutrition. Life is just horrible.
     
  13. ladysuisei

    ladysuisei Registered User

    Nov 13, 2019
    19
    I can totally relate with what you say. My mother was diagnosed 13 years ago and deteriorated extremely fast. We’ve been in stage 6 for at least 8 years. We’ve been in last “ active dying “ stage about 9 months. It was the gp who used the term “ actively dying “ but I believe that my father ( main carer) is largely in denial. We’ve been down the route of liquid thickener for many years but even that is causing major choking issues. My mother sometimes looks terrified when dad puts food/ drink in her mouth.......I believe she’s suffering, but who on earth can determine when nutrition is actually deemed as unsafe?

    Tomorrow we have a visit from SALT, which makes me feel very apprehensive. I don’t know if there is anything further that can be done. I am sure you will agree with me when I say that this life is hellish for the whole of the family.
     
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,961
    the Salt teams are lovely people. They will assess swallowing etc. Actually your Dad might benefit from their input a lot
    X
     
  15. AliceA

    AliceA Registered User

    May 27, 2016
    2,518
    Salt team really help. Xxx
     
  16. ladysuisei

    ladysuisei Registered User

    Nov 13, 2019
    19
    Actually they said swallowing is “ extremely risky “ and that’s that. Apparently we will get a report. In the meantime, life goes on as usual. This is horrible.
     
  17. ladysuisei

    ladysuisei Registered User

    Nov 13, 2019
    19
    Well, sorry I’m repeating myself here ( !!!! ) we had the assessment. The woman had no background information, so was totally useless. I feel so mentally low. She said she would tell the gp there’s a significant risk of aspiration, but didn’t say anything about a follow up? These people are worse than useless based on today. She wasn’t aware of the palliative care situation, so my father will continue feeding my mother. My mother may well choke to death- this nearly happened yesterday. I cannot understand why my father cannot see my mother’s in a lot of pain, despite the morphine.
    All I know is that I could do with a ( very long) holiday.
     
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,961
    How is the GP allowing this situation ?
    Put everything in writing

    I really think you need to step away from this now, for your own health. Your Mum is in palliative care, what does the palliative care team say about the situation?
    Sounds like a nightmare
    Poor you
    X
     
  19. AliceA

    AliceA Registered User

    May 27, 2016
    2,518
    Sounds as if GP needs more input all round.
    I know how difficult this is to get. I often think I am expected to have a nursing degree. Your dad is probably in deep denial. Try and get a break if possible. X
     
  20. ladysuisei

    ladysuisei Registered User

    Nov 13, 2019
    19
    Hi there thanks for your reply. It’s totally impossible for me and my sister to leave my dad in the lurch with mum’s care. He only gets respite from this horror when we go over 3 or 4 times a week so he can go out. I feel desperate actually, because now we’ve received the copy of the “ recommendations “ from SALT I believe that the gp will also have this too. The SALT lady wants the doctor to become involved, I think, because of the real risks associated with aspiration. God, I can’t believe it’s come to this- I know my mother is in pain,,,,,,but dad is in a state of denial and won’t ask the palliative team to review the dose of fentanyl. I dare not go behind his back and speak to them myself. This will definitely cause a rift and tbh I just dont feel up to dealing with family tensions as well.
    I keep voicing my views re the pain management review- dad actually gets annoyed when I raise this. He maintains that it’s just uncomfortable. Last night my mother had a particularly bad choking episode- she goes purple in the face and can’t catch her breath or cough or anything. My limited knowledge ie off Google, tells me this is putting so much strain on her body one day her heart will just stop. She is incredibly frail.
    I think that me and my sister are in a fairly unique situation because my father seems oblivious to the warnings we’ve been given. He just says its a problem with no answer. I am hoping that the gp will intervene now. It’s my view that if the gp ignored the warnings highlighted by SALT, this would be negligent, surely. I’m feeling bleak- I’m seeing my cpn tomorrow, but actually she’s pretty useless. Well, unless because of my personality disorder, I start becoming irrational and/ or a danger to myself. Then I suppose she might actually listen. I just don’t know where this is heading. Last year, me and my OH cancelled holiday plans . This coming year he’s insisting that we go to Crete as planned in May. I have been in this state of high stress and extreme worry for 2 years without a break. This year I’ve been told I need to just carry on with what he booked...... of course even being away is not a break as my father expects daily contact for updates. Sometimes I feel like leaving the house getting on a train and disappearing.
     

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.