Coming to the end

[Missodell18]

Hello everyone,

I haven't posted for a while but I've been reading on and off.

My mum is in hospital today with multiple organ failure (a lung infection and her kidney (she only has one) seems to be failing now too). She's had Alzheimer's a number of years (diagnosed in 2018) and suspected Parkinson's disease for around 12 months. Her decline has been quite fast in a lot of ways. Before April she was still talking (even if it didn't always make much sense), walking, moving around etc. She lost mobility entirely and had to move to a care home, and around the same time or shortly after pretty much stopped speaking all together too.

About 10 days ago she had a seizure at the care home and was rushed to A&E. They found it was severe electrolyte deficiency. They had her on a drip for a day or two and then she was well enough to return the care home. Since then she's been okay-ish. On Tuesday when I last visited she was better than I've seen her in months. She was awake, alert and actually smiling at people. (She's been looking more through you rather than at you for a while). She seemed so much better I took photos to send to my sister who lives in the US.

The care home rang this morning to say she had very low oxygen levels and had been vomiting so they'd taken her by ambulance to A&E again. I think she might have gone there yesterday afternoon but the care home didn't call until today. They said they tried to call yesterday but there wasn't a reply. There is an answer phone though and no message was left, so 2/10 for effort for the care home, but that's a different matter. As it was, we were out yesterday afternoon as I had to take my dad to Hull hospital for a pre-op assessment. Because it never rains but it pours, they're checking my dad currently for lung cancer too.

I'm a bit in shock at how quickly the decline has been from seemingly fine on Tuesday to where we are today. I suppose in a lot of ways that's better but also... not. Me and my dad saw mum at hospital today. She was in resuscitation (despite having a DNR -- although they did say they would not to CPR if her heart stopped) and waiting for room on a ward. We've left the hospital because you can't really stand/sit at a bedside in there, you're in the way and there's a lot of other very ill people - although I'm not sure if we should have just stayed. I don't know how long things like this take - if she'll die very soon or if there will be a few days or what. We'll go back when/if she moves to a ward.

No point to this topic. I just wanted to write it all down.

 

[SkyeD]

So sorry to hear this @Missodell18 . Wishing you strength in the coming days and weeks. Back in June, my mum had a massive brain bleed, never regained consciousness, and had EOL care in hospital for 4 days before she finally passed. It was a blessing to be honest.

Two days prior to the brain bleed (on a Wednesday), my mum also looked the best she had in a long time - hadn't a clue who I was by then, but did talk about feeling better and going home at the weekend. She was also ravenously hungry. She didn't get as far as the weekend - she lost consciousness at midnight Friday, and died in the early hours of Tuesday. Hope there's no suffering for your mum.
S x

 

[Izzy]

I’m so sorry to read your update @SkyeD. It really is heartbreaking.

Wishing you strength for the time to come and wishing your mum peace.

 

[Gosling]

Oh @Missodell18 , I am so sorry to read your post about your Mum. It's just horrible for you.
End of life certainly varies from person to person, that's just the way it is. Some seem to be able to go on for days, even weeks, with no real sustenance of food or drink. Others don't.

I don't know whether this will help (I hope so) but when my Mum was near I just felt it in my heart, I don’t know if this was acceptance. My advice is make every day count as it is the last because you just never know with this cruel illness.

I hope that writing it all down has helped you in some way, and please do remember you will always find understanding here from members that want to help, and if you want to have rant, that's fine too. Wishing you strength in the coming days.

 

[Gosling]

So sorry to hear this @Missodell18 . Wishing you strength in the coming days and weeks. My mum had a massive brain bleed, never regained consciousness, and had EOL care in hospital for 4 days before she finally passed. It was a blessing to be honest.

Two days prior to the brain bleed (on a Wednesday), my mum also looked the best she had in a long time - hadn't a clue who I was by then, but did talk about feeling better and going home at the weekend. She was also ravenously hungry. She didn't get as far as the weekend - she lost consciousness at midnight Friday, and died in the early hours of Tuesday. Hope there's no suffering for your mum.
S x

I am so sorry to read your news @SkyeD . My condolences to you and your family.

 

[SkyeD]

Thanks @Izzy - although it happened in June and I rather expected it since I'd watched my mum's gradual decline over 5 or 6 months, plus she'd had an evolving stroke just 4 weeks prior to the massive brain bleed. Bless my mum, she wouldn't have known anything and it was a blessing in disguise. I attended the hospital as soon as she was taken in and was basically told that this was the end, and they didn't expect her to last the night. The staff moved mum from resus onto an EOL ward. I went home (I couldn't bear to watch my mum die - hadn't got the guts for it) and I rang daily. The kind and caring staff told me each time that she was "sleeping", "her breath is slowing" and "it won't be long now". The EOL nurse apparently held her hand when she died and rang me within a few minutes of death to ask if I wanted to go and see her before she was taken to (as they call it) Rose Cottage a.k.a. the mortuary. It was all very peaceful - nothing traumatic, and that made it so much easier for me to come to terms with.

 

[Missodell18]

Thank you all for your kind words and support. I'm so sorry to hear your stories about your loved ones too. I'm very thankful for this forum as unless you've really experienced this brutal disease and watched people going through it I don't think you really appreciate the realities of it.

We're on a bit of an emotional roller coaster here. On Friday when I wrote my original post thing were very bleak. My dad had asked an A&E doctor if my mum would recover and he'd said 'no' then added 'very slim'. Now I don't know if this is still the case, it's all a bit confusing. She was first moved to an observation ward then up to a more regular ward. She was on oxygen until yesterday. I think she's still being treated for pneumonia though. I asked a nurse on the observation ward about her kidney failing and she didn't seem to know anything about that and said that she'd had a scan that showed an inflamed gall bladder but no blockages (they think).

So I don't know what to make of it all. On Saturday she was actually a bit better - awake (which in itself is kind of unusual) and even saying a couple of words now and then (also unusual) , but then Sunday, although off oxygen now, she'd gone back to being a lot less alert, eyes closed, not much response. They said she'd eaten a tiny amount, not much. She had been nil by mouth but now isn't. It's all a bit confusing for us as I thought here we were at the end, but maybe it's not, or not quite anyway.

She's been deteriorating dramatically over this year so it's a shock and not a shock if you see what I mean. Last Christmas she came to our house for Christmas dinner. She needed help eating but could walk, could talk a bit, etc. Now all that's gone completely.

 

[HartleyHugs]

Thank you all for your kind words and support. I'm so sorry to hear your stories about your loved ones too. I'm very thankful for this forum as unless you've really experienced this brutal disease and watched people going through it I don't think you really appreciate the realities of it.

We're on a bit of an emotional roller coaster here. On Friday when I wrote my original post thing were very bleak. My dad had asked an A&E doctor if my mum would recover and he'd said 'no' then added 'very slim'. Now I don't know if this is still the case, it's all a bit confusing. She was first moved to an observation ward then up to a more regular ward. She was on oxygen until yesterday. I think she's still being treated for pneumonia though. I asked a nurse on the observation ward about her kidney failing and she didn't seem to know anything about that and said that she'd had a scan that showed an inflamed gall bladder but no blockages (they think).

So I don't know what to make of it all. On Saturday she was actually a bit better - awake (which in itself is kind of unusual) and even saying a couple of words now and then (also unusual) , but then Sunday, although off oxygen now, she'd gone back to being a lot less alert, eyes closed, not much response. They said she'd eaten a tiny amount, not much. She had been nil by mouth but now isn't. It's all a bit confusing for us as I thought here we were at the end, but maybe it's not, or not quite anyway.

She's been deteriorating dramatically over this year so it's a shock and not a shock if you see what I mean. Last Christmas she came to our house for Christmas dinner. She needed help eating but could walk, could talk a bit, etc. Now all that's gone completely.

Hi @Missodell18 I'm in a very similar situation with my mum, I can't believe how many times I've said it's like being on a rollercoaster! But it's the only way to describe it. We're actually at our third instance of end of life with my mum, who knew you could ever have this conversation more than once! But I feel like we're truly there now. Mum has been in bed fully now for 3 weeks, barely eats/drinks anything even with support by the carers and she's sleeping a lot more. However on the occasions I've been and she's been awake at times she's more alert than she has been in 2 years! I've actually felt really strange witnessing these moments, as if she's suddenly back with us! But the GP stopped her daily meds yesterday which felt very final. But today when I went after work she was asleep but the most peaceful I have seen her for a long time. I hope your rollercoaster has time for a bit of a pause soon

 

[Missodell18]

Hi @Missodell18 I'm in a very similar situation with my mum, I can't believe how many times I've said it's like being on a rollercoaster! But it's the only way to describe it. We're actually at our third instance of end of life with my mum, who knew you could ever have this conversation more than once! But I feel like we're truly there now. Mum has been in bed fully now for 3 weeks, barely eats/drinks anything even with support by the carers and she's sleeping a lot more. However on the occasions I've been and she's been awake at times she's more alert than she has been in 2 years! I've actually felt really strange witnessing these moments, as if she's suddenly back with us! But the GP stopped her daily meds yesterday which felt very final. But today when I went after work she was asleep but the most peaceful I have seen her for a long time. I hope your rollercoaster has time for a bit of a pause soon

Thank you so much. I hope your situation has improved or at least come to a conclusion too.

 

[Missodell18]

Started this thread almost exactly a month ago. Still riding this horrible rollercoaster.
Despite being told recovery was very unlikely in November, my mum did recover a bit. Multiple organ failure turned out to be gall bladder problems, which wasn’t good as normally they’d operate and remove the gall bladder but my mums too frail for that. They treated with antibiotics and she was ready for discharge after about 2 weeks but the care home wouldn’t take her back. That’s a whole other issue (and unnecessary stress) but she had to move to another care home miles away. That took about another week.

She was only at the care home for 5 days - during which we were unable to visit due to the distance but planned to visit Sunday (yesterday). When we got there discovered mum had been taken by ambulance to a different hospital, this time an hour or so away from where we live. So here we are, on End of Life again, this time they think it’s a urine infection, kidney failure and possible sepsis. The home told us she’d been eating and drinking well but doctors have asked if she’d not been eating/drinking as that was a symptom of kidney failure. They keep saying she’s non-responsive but seem to think we’re exaggerating when we say this is really how she is “normally” (non verbal, not aware of surroundings etc)

They said they’d treat with antibiotics and fluid but treatment would withdraw treatment if no improvement and nature would take its course. Well, she’s more stable in oxygen levels, blood pressure etc so I don’t know if that’s considered improvement or not.

A palliative nurse came to see us and shortly after they took the drip away so I thought that’s it then but then another nurse arrived with a new drip and they’ve also given more antibiotics so I don’t know what’s going on really.

Sorry for the long post. Thank you for all your kind comments and deepest sympathies to those of you going through similar or who have already.

 

[Missodell18]

Also because we live over an hour from the hospital it’s hard to know when/if we should leave. How do you decide when to go home (for sleep, food etc).?

We left last night and had only just got home when the hospital called and said come back, but when we did things we’d pretty much the same as before. We stayed until about midnight, went home and then came back at 8am.

 

[SeaSwallow]

Oh dear @Missodell18 I am so sorry to read what your mum and you as a family have going through. This sounds absolutely horrendous for you all. It might be useful to speak to the doctors with regards to what they deem to be an improvement and also to make your own wishes known.
Regarding going home to rest and eat, you need to do this regularly to keep up your strength. There is no guarantee that you can be there at the end, it is not unknown for people to wait until their families are not around.
Wishing you continued strength over the coming days.

 

[Missodell18]

Oh dear @Missodell18 I am so sorry to read what your mum and you as a family have going through. This sounds absolutely horrendous for you all. It might be useful to speak to the doctors with regards to what they deem to be an improvement and also to make your own wishes known.
Regarding going home to rest and eat, you need to do this regularly to keep up your strength. There is no guarantee that you can be there at the end, it is not unknown for people to wait until their families are not around.
Wishing you continued strength over the coming days.

Thank you for your kind words

 

[Missodell18]

We’re still at the hospital here. Moved to ward care now but mum seems to be in a very deep sleep. Although she was diagnosed with kidney failure this has improved and we’re waiting for blood test results. The consultant suspects mum’s gallbladder is causing the trouble again. This would usually be treated by operation by my mum would not survive an operation. The consultant wants to get mum well enough to return to the home but then we will have to “think” about the future. Ie, this may keep reoccurring and we can’t just treat with antibiotics indefinitely.

However I (and medical staff) can’t seem to get this through to my dad. He’s in a sort of denial I think really. He keeps trying to wake my mum up but I don’t think air raid sirens would wake her. He’s also accusing the medical of starving my mum to death . She’s not awake so they’re not trying to feed. She “feed at risk”. She’s on fluids so she won’t dehydrate. I think my dad would be happy to go on with a cycle of hospitals propping mum up, over and over. Obviously this can’t be in the best interests. It all feels rather hopeless.

 

[SeaSwallow]

@Missodell18 I think that you are right, it would be good if your mum could be returned to the home but it would probably not be in her best interests to keep in and on with antibiotics.
It must be hard for your dad to see that she is sleeping all the time and not eating. It must be so hard for you to support him at this time.
Don’t forget to take care of yourself at this hard time.

 

[Missodell18]

Today they were planning to discharge my mum back to the care home. The home won’t take her back but that’s a different story. I don’t know if she’s still considered end of life or not. She’s obviously not great but ‘fit’ for discharge.

 

[SeaSwallow]

Today they were planning to discharge my mum back to the care home. The home won’t take her back but that’s a different story. I don’t know if she’s still considered end of life or not. She’s obviously not great but ‘fit’ for

That must be such a worry for you @Missodell18. If your mum is funded by the LA it will be up to them in conjunction with the hospital social workers to find a suitable placement. It might be worthwhile trying to contact the weekend duty social worker at the hospital.

 

[Missodell18]

That must be such a worry for you @Missodell18. If your mum is funded by the LA it will be up to them in conjunction with the hospital social workers to find a suitable placement. It might be worthwhile trying to contact the weekend duty social worker at the hospital.

Yes she is funded by the LA. I believe they plan to move her to another ward and make it their problem (!) A doctor I spoke to a couple of days ago said he didn’t think homes liked to take people back at weekends so it would be Monday at the earliest so it’s a bit of a surprise when they said today. I’ve tried our social worker but it goes straight to voicemail.

 

[SeaSwallow]

Yes she is funded by the LA. I believe they plan to move her to another ward and make it their problem (!) A doctor I spoke to a couple of days ago said he didn’t think homes liked to take people back at weekends so it would be Monday at the earliest so it’s a bit of a surprise when they said today. I’ve tried our social worker but it goes straight to voicemail

There should be a duty social worker at the hospital, please try to contact them. The LA should also have a duty SW available. Try their website to get the number.

 

[Missodell18]

There should be a duty social worker at the hospital, please try to contact them. The LA should also have a duty SW available. Try their website to get the number.

Thank you, we’re still at the hospital. We’ve moved wards and they’ve took all the details. I’m seeing a nursing home tomorrow who accept the LA rate and say they have space so fingers crossed it might be okay. I haven’t managed to get in touch with our social worker but there is a discharge one here at the hospital (I’m told, haven’t heard from them either yet.) I’m hoping the home will be okay and we can sort something out. I think we deserve a little bit of good luck for once!