Hi all, been reading on this forum part and have a few questions.
Who actually decides if a LO is at end of life care vs just palliative care (or is there much difference?)
My MIL goes through such ups and downs in the last year, some days on she looks like she wouldn't last a week, some days she is so perky and alert and even tries to make comments on things etc. (Although her phrases are quite limited and repeated)
I know that EoL can technically last months, but I am wondering if I am hurrying to sign my dear MIL off too early?
She's been diabetic (II) for about 40 years. They just recently removed all meds because her morning bloods now show normal range. She continues to have high sugars later in the day but I was told by several GPs not to worry as there is no risk of 'long lasting damage'.
She's totally immobile now, slanting over to one side in wheelchair (often needs quite a bit of propping to sit up). Spends most of her day asleep.
Barely able to use her hands but just about manages with the right one some days.
Total confusion. Never knows where she is. She always seem to think she is where she lived in her early 20-30s.
She is doubly incontinent and totally unaware.
Doesn't recognize her grandchildren, recently started to not to recognise me, but still knows my husband.
she moans and screams for help every time anyone tried to touch her, move her etc. Sometimes she is in pain from her aching body, sometimes she'd do the same for something minor, like teeth being cleaned etc.
She frequently has infections. I recall about 4 -5 UTIs, skin infection on the pressure sore she got on her foot (months on, it started healing now!) , and a very recent chest infection, all since October.
She eats very little and drinks very little, but the latter is usually roughly same amount per day. Eating can change slightly more, up and down.
Her circulation is quite bad, legs look a bit purplish, sometimes her eyes swell a bit. She started recently having gaps in urine output, but kidney function was checked and was fine for her age. Which is strange as sometimes she stops peeing for 12 to 24hr? It usually happens once and then everything works as normal. Had 5 episodes like this in the last month.
She is 90 y o and very rarely we see her funny cheeky personality but when we do we feel guilty for assuming she is suffering or dying etc. But most days she says she is fed up, stuck here, can't do anything etc and other days she'd turn on me and blame me for 'keeping her prisoner'
Her speech is often mumbled, sometimes she can't quite get the words out at all but really tries with such an emotion. Sometimes what she says doesn't make any sense and the words don't ad up together. Most of the time communication is very non existed really. Very difficult to talk to her too as she is hearing impaired. Her hearing was said not to have changed for several years yet she doesn't understand what I say. Even a simple Hello sometimes with a wave she'd be staring at me saying 'I don't know what you are saying". Other times she seems to understand a whole sentence with little double checking.
She managed to get herself a small pressure sore on her hip too, now healed. We now have an air mattress to help this.
I really don't know if anything would change if someone (whoever that is!) decides that this is EoL ...? Would we stop treatment of infections? Would we be given more help with proper/serious pain relief if she were to have a really bad day (we have codamol)?
(Obviously, we care for mum at home)
I read on here that a lot of peoples LO's really don't talk or even open thier eyes at EoL so maybe we are a fair way away from that yet.
She had a moment of unresponsiveness 2 weeks ago and ambulance that came were asking us about the Advanced care plan or something like that. I totally was thrown off as know we have a care plan with the social workers etc. We have a full PoA and already have DNR in place and GPs provided with the Adult with Incapacity paperwork.
Thanks!
Who actually decides if a LO is at end of life care vs just palliative care (or is there much difference?)
My MIL goes through such ups and downs in the last year, some days on she looks like she wouldn't last a week, some days she is so perky and alert and even tries to make comments on things etc. (Although her phrases are quite limited and repeated)
I know that EoL can technically last months, but I am wondering if I am hurrying to sign my dear MIL off too early?
She's been diabetic (II) for about 40 years. They just recently removed all meds because her morning bloods now show normal range. She continues to have high sugars later in the day but I was told by several GPs not to worry as there is no risk of 'long lasting damage'.
She's totally immobile now, slanting over to one side in wheelchair (often needs quite a bit of propping to sit up). Spends most of her day asleep.
Barely able to use her hands but just about manages with the right one some days.
Total confusion. Never knows where she is. She always seem to think she is where she lived in her early 20-30s.
She is doubly incontinent and totally unaware.
Doesn't recognize her grandchildren, recently started to not to recognise me, but still knows my husband.
she moans and screams for help every time anyone tried to touch her, move her etc. Sometimes she is in pain from her aching body, sometimes she'd do the same for something minor, like teeth being cleaned etc.
She frequently has infections. I recall about 4 -5 UTIs, skin infection on the pressure sore she got on her foot (months on, it started healing now!) , and a very recent chest infection, all since October.
She eats very little and drinks very little, but the latter is usually roughly same amount per day. Eating can change slightly more, up and down.
Her circulation is quite bad, legs look a bit purplish, sometimes her eyes swell a bit. She started recently having gaps in urine output, but kidney function was checked and was fine for her age. Which is strange as sometimes she stops peeing for 12 to 24hr? It usually happens once and then everything works as normal. Had 5 episodes like this in the last month.
She is 90 y o and very rarely we see her funny cheeky personality but when we do we feel guilty for assuming she is suffering or dying etc. But most days she says she is fed up, stuck here, can't do anything etc and other days she'd turn on me and blame me for 'keeping her prisoner'
Her speech is often mumbled, sometimes she can't quite get the words out at all but really tries with such an emotion. Sometimes what she says doesn't make any sense and the words don't ad up together. Most of the time communication is very non existed really. Very difficult to talk to her too as she is hearing impaired. Her hearing was said not to have changed for several years yet she doesn't understand what I say. Even a simple Hello sometimes with a wave she'd be staring at me saying 'I don't know what you are saying". Other times she seems to understand a whole sentence with little double checking.
She managed to get herself a small pressure sore on her hip too, now healed. We now have an air mattress to help this.
I really don't know if anything would change if someone (whoever that is!) decides that this is EoL ...? Would we stop treatment of infections? Would we be given more help with proper/serious pain relief if she were to have a really bad day (we have codamol)?
(Obviously, we care for mum at home)
I read on here that a lot of peoples LO's really don't talk or even open thier eyes at EoL so maybe we are a fair way away from that yet.
She had a moment of unresponsiveness 2 weeks ago and ambulance that came were asking us about the Advanced care plan or something like that. I totally was thrown off as know we have a care plan with the social workers etc. We have a full PoA and already have DNR in place and GPs provided with the Adult with Incapacity paperwork.
Thanks!
