So my very determined mum is still somehow fighting this very cruel disease. Again more weight lost, even more frail. Swallow still somehow managing to get some liquids down. She looks so ill, I feel so sad, unable to discuss her wishes or fears and just going with gut instinct for what she needs and may want.
This evening her fingertips on one hand, that she's lost use of ,have gone blue. Her other hand is not looking a good colour either, she seems chesty, but almost always does. No temperature and her hand is cold as ice though the home is very hot and she doesn't seem cold elsewhere.
The lovely nurse told me they'll make her comfy but she could see a real deterioration over the last 3 weeks and to go home and try to relax.
Anyone know what this is or had this happen to their loved one ?
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MRSYafffle
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I think blue fingers tips would indicate poor blood circulation in her hands which might in turn could be an indicator of general issue with the cardio vascular system.
Thankyou, she is very frail and everything seems to be failing. They are monitoring her so I'll just have to wait and see. They've told me no treatments, will just ensure she's not in pain
Hi there. Have the nurses checked her oxygen levels in her blood? It may well be that her heart is beginning to fail or that she’s got hidden pneumonia from aspirating. The most important thing is that she is not in pain so focus on keeping her comfortable. If her oxygen levels are low they could perhaps give her an oxygen mask.
Is she in a nursing home or her own home? My husband died of PSP in August and for the last month of his life his condition deteriorated rapidly. He was very sleepy and doubly incontinent. His breathing pattern changed. ( I was told that extra oxygen would not be helpful. ) It became harder and harder to get food, medications or even drinks into him. He was unable the last week or so to swallow at all….or even open his mouth. It was a relief to be told by the hospice outreach nurse not to attempt to give him his medication, then in crushed and liquid form, or even food and drink. His whole body was closing down. He only once had pain relief in injection form as he seemed to have a headache and was a bit fidgety but otherwise was calm and peaceful. He was kept comfortable, having his position changed. And lips dampened. He spent his final night in the wonderful local hospice and slipped away with myself and our daughter holding his hands the following afternoon.
I’d had to make the point several times strongly during that last month that I am sort of person who needs emotionally to know exactly what I need to prepare myself for. I really wanted to be told that he was then at End of Life stage.
I send you strength and love and do hope my recollections have been of some help.
Thankyou for responding. I'm so sorry for your loss that sounds like a real battle during those last 4 weeks. It had helped, I find nobody wants to discuss it. They just keep saying it's not good . When questioned they just say it's very hard she's obviously deteriorated.
At least I'm thinking this may go on much longer than I thought.
I hope you are being kind to yourself, grief hits hard.
With this illness I feel we are in a gradual state of grieving as another ailment, issue, failure comes about.
Mums in an end of life care home as she wasn't expected to last very long in February when she was placed there after another hip fracture.
I will try again to have a sensible conversation, I feel the same as you and really need to know what I'm preparing for.
Sending you lots of love, really appreciate your reply. Xx
My mother is now in end of life care. She stopped swallowing two days ago and so isn’t having anything to eat or drink. She has what we think might be a lung infection because she has a raised temperature, yet can’t be given any antibiotics as she can’t swallow. It’s very distressing to watch and I do hope that this stage doesn’t last 4 weeks. That would add to the so many other challenges this disease brings with it. I know that my mother is being very well cared for in her nursing home and I am spending all my time with her.
I completely get what Susanne says about wanting to know and be informed of what could happen next in advance of it happening as then at least some sort of preparation can be made mentally about what you will be facing next.
Your poor mother, she sounds very ill, glad she is being well cared for. Everyone is different and each persons will to carry on effects the journey they're on. I hope you and your mum are able to find some relief soon.
I agree with you both, it's bad enough as it is, preparing mentally for this is crucial. We are relied on to be so strong and resilient yet how can you do this without knowing what to expect.
Thanks for your kind words and taking the time to reply in what is such difficult time for you
The amazing social worker at the hospice who supported my daughter and myself with regular Zoom meetings during my husband’s last year of life, explained that we were coping with what’s called “anticipatory grief “ which takes its toll. It also does not lessen the grief which overwhelms one after the death. He listened to all my anxieties and was honest in answering me straight forwardly along with the lovely outreach hospice nurse who came and visited myself and my husband regularly during that final year. Before they together helped my daughter and I ( I was given a helpful leaflet from the hospice about the actual end of life stage ) I was just being told that PSP is a completely unpredictable illness and the end could be weeks, it could be months. It was weeks but I got exhausted both mentally and physically in that period, often feeling that I wasn’t really being listened to by the district nurse team.
Sending love to you both. And Libby, your mother sounds very much to me like she’s reached the last week to ten days of her life. Touch and you speaking to your loved one, while he or she is kept comfortable and painfree, is all that matters now.
Thank you to you both for your kind supportive words and information. When I try and explain to people about my mother’s disease, it’s symptoms and how it makes a body deteriorate they usually look at me blankly and don’t quite get the awfulness of it all. So it is so refreshing to be able to communicate with people who ‘get it’. Thank you for sharing the anticipated grief explanation as I now realise I have definitely been experiencing that for a couple of years. A couple of weeks ago I suddenly was consumed by tears, grief and sobbing that I couldn’t stop, (I am usually such a level headed person); it made me feel like I was going a little mad. Now I have an explanation for it, thank you.
I hope that you and you daughter are being supported well in your grief particularly over Christmas which is always a sad time when there are spaces left by loved ones, and Mrs Yafffle I wish your mother peace and comfort in the time that is left to her.
So sorry to read about the hard times you are all going through.
I work as a macmillan nurse and I would agree with most comments that you are likely seeing her circulation shutting down especially given the other signs you have mentioned. 'm sorry this is probably of little comfort in such a difficult time but this blue hue is not uncommon for us to see and is considered perfectly pain less; it generally looks worse than what it actually is.
If the chestiness is bothering her then you should speak with the DN or GPs about a medication which can hep minimise further fluid from collecting (buscopan or glyccopyronium are often the preferred methods); the crackling it generally a small amount of natural chest secretions, which you'd normally cough clear and when this cannot be done it becomes noisy and can build. The drugs I have mentioned prevent further secretions from gathering whilst the stuff that is there settles. The drugs used are generally an injection which can be put into a pump or syringe driver with extras which can be used as needed.
Thank you Peter, that is very helpful. Even though my mothers fingers aren’t turning blue she is now on doses of morphine and glyccopyronium, and I do like to know what is being administered and why. There is this perculiar ‘code talk’ that happens when people are at the end of life which even though I think comes from a place of kindness and not wanting to upset people it does leave a bit of confusion about what is really going on.
Sorry to hear that things aren't necessarily being explained to you; I believe information is power and if someone understands what I am doing and why then it makes the most difficult of situations slightly easier to process. If you know the tools we bring, you know what things to look for and it makes things easier all round.
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