My Mum was diagnosed with vascular dementia 10 years ago - she is now 90 years old. She has been in care home for the past four years and has slowly, oh so slowly declined. She is now at the end of the path - something that after all this time doesn't seem possible. However I had no idea that it would be such a battle. She hasn't eaten in weeks, is having severe difficulty swallowing and hasn't drunk more than a few sips for the past few days. She hasn't been out of bed for weeks and has a lesion on her foot grade 3 so is on morphine for the pain. Also liquid paracetamol and ibuprofen are squirted into her mouth with a syringe though most of it seems to dribble out again. She can't talk and is literally fighting with her arms and body. She is very restless and keeps jerking and moving almost spastically - sorry if that isn't politically correct but I don't know how else to describe it. Is this from her brain, is she in pain or is this part of the dying process? The nursing and caring staff in the home are very good but no one seems to be saying very much. To me it feels like she is literally fighting death - her brain has given up on her and so her animal instinct to survive has kicked in??? But I might be barking up the wrong tree. I suppose it doesn't matter only that I would really like her to have a peaceful death but this awful disease seems to have robbed her of this last dignity too. Just wondered if anyone else had experienced anything similar. I know the end is imminent but I never imagined it would be this hard. Sorry for ranting!
I thought that dying would be peaceful
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Im sorry that this is so hard for you. I cant help much but i am bumping this up as there will be someone here who can. I lost my mum last week. She was restless for 2 days then very peaceful for the last two days of her life. Sending prayers for peace and calm times for you too.
I'm so sorry that you're upset by your mum's agitation. I hope she becomes peaceful very soon for you.
I would have thought she needed something stronger than paracetamol and ibroprufen near the end of life...to make sure she is not in pain, she seems very uncomfortable to say the least......and a patch or a drip may be best to administer it...though with a bit of care surely the staff can get the liquid in a syringe down her throat....talk to her gp and the care home staff about your concerns.
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Yes, it's very similar to my Mum's last week, and very troubling to see. She was restless like that for half the week, moving her body continuously into strange shapes, almost like a restless baby not knowing what to do with her limbs. I don't know what causes this, whether the spirit is already practically absent, but the automatic processes of the body continue. Or, the faculties are shutting down one by one and just as the person with dementia becomes more like a child, now they have gone backwards from childhood to babyhood again. It's horrible to see and you have my total sympathy.
My Mum was in hospital following a stroke 11 weeks previously. When this downturn started, they told us she was now dying. At that point she couldn't swallow either, and they tried rehydrating her with subcutaneous liquid (under the skin, into her abdomen) but they said it wasn't being absorbed well. So they would have known full well that this was nearly the end. They said they would give her morphine in case she was in pain, and possibly they upped the dose deliberately. Her last 2 days were sleepily still and peaceful and she passed away in the middle of the night.
About 2 weeks before this phase started, her lower legs became mottled-looking although she wasn't cold. Apparently this is a sign of the body stopping its functioning, though no-one said so and so I didn't realise it at the time.
I hope the end will come quickly for your Mum. ((((hugs)))) from Owly.
My Mum was in hospital following a stroke 11 weeks previously. When this downturn started, they told us she was now dying. At that point she couldn't swallow either, and they tried rehydrating her with subcutaneous liquid (under the skin, into her abdomen) but they said it wasn't being absorbed well. So they would have known full well that this was nearly the end. They said they would give her morphine in case she was in pain, and possibly they upped the dose deliberately. Her last 2 days were sleepily still and peaceful and she passed away in the middle of the night.
About 2 weeks before this phase started, her lower legs became mottled-looking although she wasn't cold. Apparently this is a sign of the body stopping its functioning, though no-one said so and so I didn't realise it at the time.
I hope the end will come quickly for your Mum. ((((hugs)))) from Owly.
I'm am so sorry, this must be so distressing for you
It seems to me that they need to increase mum's Morphine rather than trying to give oral pain killers to deal with any breakthrough pain, which I assume they are doing with the oral syringe. If your mum cant swallow it it can't be helping to ease pain and may be distressing her as it probably is distressing you.
Their are drivers that deliver Morphine continuously , which I hope they are using.
I don't know if some pain patches can be used along with morphine , my mums pain patches were opiate based so they wouldn't be suitable but their may be some which are not opiate based.
Their are special swabs that can be used to moisten mums mouth, which will help keep her mouth comfortable
Hard though it is, try not to worry about Mum not eating or drinking, sadly their can come a time when a persons body can no longer cope with food or fluids, this does not mean that fluid should not be offered, just not forced in any way
I know this is a very difficult time for you seeing your mum like this.
Am thinking of you
xxx
It seems to me that they need to increase mum's Morphine rather than trying to give oral pain killers to deal with any breakthrough pain, which I assume they are doing with the oral syringe. If your mum cant swallow it it can't be helping to ease pain and may be distressing her as it probably is distressing you.
Their are drivers that deliver Morphine continuously , which I hope they are using.
I don't know if some pain patches can be used along with morphine , my mums pain patches were opiate based so they wouldn't be suitable but their may be some which are not opiate based.
Their are special swabs that can be used to moisten mums mouth, which will help keep her mouth comfortable
Hard though it is, try not to worry about Mum not eating or drinking, sadly their can come a time when a persons body can no longer cope with food or fluids, this does not mean that fluid should not be offered, just not forced in any way
I know this is a very difficult time for you seeing your mum like this.
Am thinking of you
xxx
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HI,
So sorry for your pain. I thought I would answer as I have just posted a thread to say my Brother-in-law died last night. He was very much the same as your Mum and been on end of life for 13 days. He was fitting right to the end, no fluid just morphine in a shringe.
He had vascular demenia too but also had falls which caused a blood clot on the brain.
The staff did say that he wasn't in pain but watching them die slowly is unbearable.
Have you had end of life nursers in to Mum, I am sure they will make her comfortable and out of pain.
Keep strong and pray that her passing will be soon. Thoughts and love go out to you.xxx
So sorry for your pain. I thought I would answer as I have just posted a thread to say my Brother-in-law died last night. He was very much the same as your Mum and been on end of life for 13 days. He was fitting right to the end, no fluid just morphine in a shringe.
He had vascular demenia too but also had falls which caused a blood clot on the brain.
The staff did say that he wasn't in pain but watching them die slowly is unbearable.
Have you had end of life nursers in to Mum, I am sure they will make her comfortable and out of pain.
Keep strong and pray that her passing will be soon. Thoughts and love go out to you.xxx
This happened with my mother. They directed an increase in morphine, because she seemed to be in distress. The philosophy of hospice care is that the person be comfortable. Everyone handles this differently, but it does seem as if more morphine is needed to take her body out of its distress mode. Have you hospice in place? Perhaps it's time to move things forward with the morphine. This sounds distressing for your loved one, as for you.
You need to make a fuss now to get the Dr to leave an end if life diamorphene prescription for your Mum. We couldn't get one in time and I saw pain on my Mum's face. Please make a fuss now so that the prescription is filled and in the cupboard for when she needs it. It is my one regret that I didn't get that in time for her.
My FIL didn't have the agitated 'jerking' but his limbs were quite contorted when he was close to death. He was given a muscle relaxant which seemed to help him lie in a more comfortable position. Perhaps this could be discussed too?
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Are the palliative care team coming in? If not you should ask the care home to call the surgery and ask for a palliative care nurse, they will be able to tell how much to give her to reduce pain, paracetamol and ibuprofen are not usually for end of life,as everyone else has said morphine is usually the preferred option by the end of life care teams.
I am so sorry that you and your mum are going through this.
If her body is shutting down it is possible that she cannot process oral painkillers, even if she manages to swallow them. It does sound as if more specialist input is needed to ensure your mum is kept as comfortable as possible and allowed to slip away quietly.
If her body is shutting down it is possible that she cannot process oral painkillers, even if she manages to swallow them. It does sound as if more specialist input is needed to ensure your mum is kept as comfortable as possible and allowed to slip away quietly.
Thanks
Thank you, thank you all you wonderful people. Today has been much quieter. The nursing staff have fitted a butterfly for the morphine and she has been much more peaceful as a result. Also glycerine swabs are being used and altogether things are much more as I imagined it should be. I am sitting by Mum now. The saying goodbye is so hard but at least she doesn't seem to be in distress any more.
Thank you, thank you all you wonderful people. Today has been much quieter. The nursing staff have fitted a butterfly for the morphine and she has been much more peaceful as a result. Also glycerine swabs are being used and altogether things are much more as I imagined it should be. I am sitting by Mum now. The saying goodbye is so hard but at least she doesn't seem to be in distress any more.
Am praying as I write this reply to you because I want to send you support. I don't want to distress you in anyway. Your Mum is on morphine and also liquids meds. Am sure staff are doing their very best to keep her as pain free as possible. Please speak to them about your worries. Is there anyone that you think your Mum would like to see?
I believe peace will come to your Mum and all of you.
A few days before he died, my brother was very distressed. We got to him days before he died. ( in a different country). Closer to his death, he became peaceful.
Loads of love,
Aisling
