Rollercoaster of emotions

Discussion in 'End of life care' started by Mouse2014, Aug 22, 2019.

  1. Mouse2014

    Mouse2014 Registered User

    Mar 9, 2014
    23
    My dear Mum is 92, has had mixed dementia for 11 years , had a stroke in 2016 which left her unable to speak and is now nearing the end in her nursing home.
    I don’t know why I am posting this, but just need to sound off.
    Those of you going through this will know the ups and downs of UTI, chest infections, Antibiotics, hospital visits , being at deaths door then the miraculous recoveries, Rollercoasters of emotions.
    Mum was hospitalised a month ago with a Chest infection and Shingles, she was discharged back home , very poorly. 5 days later, readmitted to hospital with severe dehydration and hypoactive delirium which left her sleeping 23 hours a day.
    She was discharged home and the GP met us there and we discussed an end of life care plan should the time come. mum subsequently rallied and started to eat and drink again but in the last few days has become more frail, unable to sit up , sleeping 20 hours a day and appears to be in pain. The Nursing staff contacted our GP to implement the ‘end of life process’ due to Mums pain and discomfort . The doc prescribed cocodomal and gel?! And are not implementing the planned approach to Mums end of life.
    All I want is for Mum to have a pain free end of life, what right do the doctors have to deny Mum this? I am devastated and intend phoning the GO tomorrow for a second opinion. nursing staff in the home are furious with GP.
    Any suggestions as to what I can do if doctor insists on Cocodamol . This is more than likely going to make Mum constipated, causing more pain, having to take laxatives and the cycle of indignity continues... I don’t know whether I am coming or going? Please help
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,168
    Merseyside
    DTP is the perfect place to vent @Mouse2014
    I think phoning the GP will be best.
    I wish you strength.
     
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,439
    Female
    Dundee
    I’m sorry to hear that your mum is suffering. I certainly agree that contacting your mum’s GP is essential. I’m sure the nursing staff at the home will want to talk to the GP as well to ensure that your mum is comfortable.
     
  4. Latitude

    Latitude Registered User

    Jul 12, 2019
    25
    I'm sorry that one professional is causing a block in what is such a heartbreaking decision. Practitioners do have their own beliefs and practices and maybe this reaction from them is unique to them, and other GPs (If there are partners) would be of more help?

    On a separate note I want to thank you for sharing your situation. My PWD is currently in hospital and responding well to the care and lovely staff. However reading your posts has made me realise we are much further down the progression than I had realised and we need to get up to speed re how this will progress and end of life care options and have some discussions together now.

    Hopefully you can get GP support on board very soon. Please vent away and keep on sharing.
     
  5. Mouse2014

    Mouse2014 Registered User

    Mar 9, 2014
    23
    Thank you all.
    I phoned surgery this morning as did the Care home nurses. The GP has now called out to home to finalise details. We have now removed all Mums medications with the exception of analgesia administered through a sub cutaneous needle in her arm. The risks associated with the withdrawal of these meds won’t affect Mum too much whilst she is in her current condition. She is finding the swallowing of tablets problematic so this is one less nightmare for her. ( She is on 11 tablets which is horrible for an able bodied person, let alone a frail elderly person with swallowing problems)
    They will monitor her on the pain relief medication and should she require pain meds 3/4 times daily, a driver will be used instead. (Just in case medication it’s been called)
    The doctor will further inform NHS24, district nurses and update all records to show this plan. There is also a DNAR in place.
    I am heartbroken that we’ve done this but am pleased that this GP has agreed with nursing staff that this will ensure Mum is comfortable, we cant ask for any more than that.
    I only hope that this final stage of Mums life is less traumatic than the previous 11 years. I recall very clearly Mums terror during the earlier stages that she was losing her mind and she’d cry all the time as she was so frightened. This is truly a cruel illness...
    thanks for your messages of support. X
     
  6. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,168
    Merseyside
    I’m glad you’ve got things sorted so your Mum can be peaceful @Mouse2014.
     
  7. lis66

    lis66 Registered User

    Aug 7, 2015
    253
    Sending you hugs and hope you find strength at this very difficult time xx
     
  8. Mouse2014

    Mouse2014 Registered User

    Mar 9, 2014
    23
    Mum has been in ‘end of life’ for a week now, finding it increasingly difficult to swallow, hardly drinking and eating teaspoons of food on a good day.. sleeping 20 hours a day. Morphine being administered 2 times a day, not yet on a syringe driver,
    Mum had a stroke in 2016 and left her with Aphasia, unable to speak.
    Today, has left me shattered, Mum ate half an omelette, which was surprising,, she lay staring at me intently for about an hour, her eyes never leaving me, she then became agitated , fidgeting and touching her hair, face, nightie, bedding.
    She then moved her duvet down past her knees and said in a very clear voice. I want to get out of bed! And subsequently attempted to get out of bed, ( thank god the sides were up and she couldn’t actually do it,)
    I freaked out as Mum hasn’t spoken properly in years, could barely move so I called nursing staff for assistance, when they came in she smiled at them and said again. ‘When can I get out of bed. ‘
    They said this was likely a ‘high or euphoria’ as a result of morphine? And it would pass... she was still high when I left her ( nursing staff saying she was doing well and her observations, otherwise were good)
    Has anyone else experienced this. My husband reckons Mum will make a bit of a recovery , my sister thinks this is the ‘high’ before Mum passes... please help? Any ideas or has anyone experienced this.,
    I’m an emotional wreck .. this rollercoaster of peaks and troughs really is hard..
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,256
    Female
    South coast
    (((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))) @Mouse2014

    You are right - it is a roller coaster. And the trouble is that dementia can surprise you.
    My mum was put on end of life, I posted on here about it, got a load of support and then she bounced back! It happened again on a further two occasions - and then of course, on the fourth time she didnt.

    Im not saying that this is what will happen to you, Im just saying that everyone is different and there is no knowing what will happen. Either your husband or your sister may be right, but it is unusual for people who are actively dying from dementia to eat or drink. Hang on in there, even though this period of uncertainty is horrible soon you will know one way or another.
     
  10. Latitude

    Latitude Registered User

    Jul 12, 2019
    25
    The problem is there is no common pattern and no way of knowing if this is a "last rally" or something else. It is hell not knowing how she really is, except very poorly. You try to prepare for one eventuality then get blindsided with a different path.
    I had a different episode with my PWD recently, one minute I thought I was possibly seeing them for the last time, then suddenly things turned around.
    But however this path meanders and turns the direction is roughly the same and the outcome sadly inevitable. I've decided to try and enjoy every visit (although that's not always easy!) and try to just enjoy the time left. Rather than think "this is the last time I'll see them" I try and make a special moment, even if it's a whisper in the ear or a song, or reading a poem, or looking at some photos from the past or reminiscing about an event or happy times, I'm hoping those moments are what I will remember, not the reality of what is actually happening if that makes sense?

    Thinking of you and wishing you strength and courage and peace for you all
     
  11. Mouse2014

    Mouse2014 Registered User

    Mar 9, 2014
    23
    Thank you all...it’s a sad day when we have all experienced similar situations with our loved ones. Really does show you what a cruel illness this is.
    Today Mum was given pain relief and Midazolam for agitation this morning and effectively slept the day away, her breathing rhythm was start stop with huge gaps in between.. I had to touch her to see if she was still with us,, she never ate or drank at all today with only swab sticks to wet her mouth,, I do suspect it won’t be long for her now and that yesterday was a rally....
    thank you all so very much. This last week has been harrowing but I am so desperately sad for my Mum whose journey has been traumatic.
     
  12. canary

    canary Registered User

    Feb 25, 2014
    10,256
    Female
    South coast
    Yes, I heard my mum breathing like that, so I think you are probably right.
    Stay strong
    More (((((((((((((((((((((((((((hugs))))))))))))))))))))))))
     
  13. Mouse2014

    Mouse2014 Registered User

    Mar 9, 2014
    23
    It’s now 6 am on Monday and Mum has had the death rattle since 8pm on Saturday, we have spent the last 24 hours with Mum gulping for air, gasping for breath, agitated, morning, sweating ( and extremities frozen) all t the same time.Thankfully with excellent care from. Rising staff in the home, she is finally calm..still rattling but minor in comparison.
    This sad tale still isn’t over for Mum but at least now she appears settled..No-one can prepare you for this journey with your loved one but for me going forward expect the
     
  14. Mouse2014

    Mouse2014 Registered User

    Mar 9, 2014
    23
    It’s now 5:32 on Tuesday and Mum is still hear rattling away and I have to say I am near to collapse by the sound of the never ending rattling from her poor secretion filled throat and chest. I’m at the point that the sound is making me physically ill as I can’t tune out...,This is a bloody tortuous end for a lady who has had a traumatic battle with dementia .. This end of life road for us isn’t finished but my god, I would not wish this on any living soul
     
  15. canary

    canary Registered User

    Feb 25, 2014
    10,256
    Female
    South coast
    (((((((((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))))))))))))) @Mouse2014
    This stage is hard, but it will be over soon
    Could you play soothing music which may help you and your mum will probably still be able to hear?

    I remember this stage - I ended up wondering how on earth mum was still alive, but in the end she passed peacefully
    Holding your virtual hand through this time.
     
  16. Mouse2014

    Mouse2014 Registered User

    Mar 9, 2014
    23
    Bless her wee heart, Mum died at lunchtime on Tuesday, thankfully at peace now..

    Thank you all for you support and comments, it was reassuring that someone was with me at this time,,
     
  17. lis66

    lis66 Registered User

    Aug 7, 2015
    253
    So sorry for your loss @Mouse2014 sending hugs to you and glad your wee mum is at peace and free from this horrundeous illness take care xxx
     
  18. Graybiker

    Graybiker Registered User

    Oct 3, 2017
    158
    Female
    County Durham
    So sorry for your loss. I have just been through a very similar scenario, sadly mam died on 22/8. I know very well wanting to block out the sound of her breathing, it becomes unbearable.
    I can only wish you peace in the coming days.
    X
     
  19. canary

    canary Registered User

    Feb 25, 2014
    10,256
    Female
    South coast
    ((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))) @Mouse2014
    Im glad your mum is at peace now
    Try to get some peace now yourself. You have done everything that you could and the dementia is now gone.
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    701
    Sending you love & light
    (((hugs)))
     

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