Mum in hospital,worrying times.

[Chaucer 1931]

I've been hovering around the forum today,wanting to ask your opinions and advice,hesitating and wondering how best to write or word what i need to say and ask..
My mum who I live with and care for full time,is in hospital with pneumonia and kidney damage,she was on iv fluids and antibiotics,but has been swapped over to tablets and normal/usual drinking,I think-due to her pulling the cannulas out.One of her arms and hands are swollen like oedema and I guess this may be due to the trauma of cannulas,along with the ongoing infection she has.
The doctors don't know where the infection is based,but she is and has suffered from uti,due to her being catheterised permenantly.
I know she is very ill,crying for her long dead mum,she is refusing food,which again I can understand to an extent as she's feeling so poorly,but she's too weak to pick a beaker of water up to sip,let alone manage to use cutlery to eat.
I had managed to get her to take a few sips of water and squash while I was there for five hours today,but hardly enough to make 80 mls at all.
Should I be discussing palliative care yet? It has been a week since she has eaten anything and is still taking a little fluid,let alone not enough to keep a fly alive!
I know the nursing staff can't be with her and encourage mum to drink,so what can I do? This is so hard to watch,like she is suffering or hanging on to life,I don't know.
I've come home and just sat and broke my heart,as I'm feeling so helpless.Thanks for letting me vent.


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[Hibni]

Sorry I can't offer you any advice, but just want to send you some sympathy and hugs for all that you must be going through at the moment.

 

[maryw]

I've just read your post and understand just a little how you feel. It is horrible and uncomfortable not knowing how things will turn out and not being able to sort things. Perhaps you need to stress that you need to speak to a senior doctor and talk openly and honestly so you have more knowledge about your Mum's medical condition. You cannot do more than you are doing so be kind to yourself too xx

 

[clareglen]

I'm in a similar situation. I have a thread in the End of Life forum. My mum been in hospital 3 weeks now (she was walking & talking before hospital) originally after a fall with a broken humerus, but has gone down since she went in. Has slept constantly, is catherterised, can't swallow or talk, can only move fingers a bit on broken arm & other arm from the elbow. She's been prodded & poked is on IV antibiotics for ecoli of the blood & now chest infection. She has a fluids drip in too. They have to keep moving cannulas as arms tissue-ing, fluid drip was going into her stomach today & IV meds in hands. Feet are swollen which must be sore. After 2 weeks of no food they put a nasalgastric tube up her nose to get her Parkinson's meds in her but began feeding her too. It was just sitting in the stomach & she was sick & they had to draw it off then put more in until I spoke to consultant & got the food stopped. It was making her worse. Yesterday she rallied & physio had her sitting on edge of bed holding her upper bodyweight & head up for 5 mins. I felt guilty at stopping her food. However, today she was asleep again with fresh chest infection/pneumonia. I think she's had enough & she would not have wanted to be kept alive like this & did specify DNR years ago. I am wondering at what point do I say stop? Stop the antibiotics, blood tests, hoisting her from bed to space chair & back, IVs? I think she will need her Parkinson's meds to stop her being rigid as that could be very painful & uncomfortable, but at what point do I stop everything else? She's 86 with Parkinson's & severe dementia. Bank hol weekend so unlikely to be able to speak to consultant till Tues, but if she remains as she was today I may have that conversation with consultant. Although antibiotics are for 7 days from today.

 

[99purdy]

Hi, just read your post and could not read and not reply. My family and I were in a very similar situation about two months ago. Stepdad was admitted to hospital with a very serious infection, it took days to find out what was wrong. They, and we did too, think that this was it, it was very traumatic and upsetting. Anyway forward two months and Dad is back at his nursing home. Causing mayhem!! I am sorry that you too are in this situation and know exactly how you feel. I can only send you lots of hugs and send you my best regards. I hope things work out well for you and your mum. X

 

[clareglen]

They, and we did too, think that this was it, it was very traumatic and upsetting. Anyway forward two months and Dad is back at his nursing home. Causing mayhem!!

Wow, this is amazing. But it's what makes the problem. Will she or won't she come through. Clearly suffering & I want to stop the suffering but what happens if it is only an infection & not the end. Hospital don't seem to know either.

 

[Chaucer 1931]

Thank you,everyone of you who replied,it is very much a case of waiting to see how she progresses or deteriorates,and thank you Purdy,I'm glad to hear that your stepdad came through and got well in spite of being so ill,it's not too late for me and also Clareglen to give up hope with regards to our parents even in the serious condition they are,so thank you for sharing that with us.

Clareglen,I didn't know whether to initially post this in the end of life section too,it's such a complicated and uncertain path we are all on,but the not knowing is almost unbearable to deal with as much as the decline in their condition too,Did you have to push for answers to your concerns too? My mum sounds as though she is in the same condition as yours,can't muster up enough strength to pull her self up in bed to even sip water,so I was helping her as much as she would let me.
I did speak to one of the junior doctors who was trying to get a cannula into mum,and he was rather vague about her condition,I guess I will have to wait until next week to speak to a senior doctor,if mum is still with us,this is much harder to deal with than I ever imagined,just do not know what is coming next.


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[clareglen]

Did you have to push for answers to your concerns too?

No-one seems to have answers. I genuinely don't think the hospital know. There seems to be people, on this forum, who've been called in & then relative lasts for months. I think my mum is dying. The hospital, & they're the experts, don't seem to think this, but I cannot see her coming back from this. She is in a vegetative state, cannot move her tongue now never mind swallow. Is asleep rather than unconscious, but cannot be roused most of the time, totally out of it. They think they can get her back to walking (could only shuffle & spacial awareness zilch, hence the fall, but they have to be allowed to walk, can't keep them sat down all the time). The care home she was in told me the hospital would tell me if she was close to death. I think all this medication is prolonging suffering & keeping people alive as opposed to letting them go naturally. Obviously they need painkillers & Parkinson's meds to keep them comfortable, but not sure about the antibiotics, although apparently these can aid comfort too. They are continually hoisting her from bed into tilt & space chair, it's awful. Might ask for this to be stopped too. I want her to be comfortable & pain free. If she picks up, fine, if not, then at least she'll be out of this suffering. She's ended up the very way she didn't want to end up & the only one in the family, so far, that has ended up like this as opposed to dying quickly. Chaucer 1931, at least we're not alone. We'll just have to bear it. This site has been extremely cathartic for me, whilst I was caring for her myself, then a brief 5 month respite in the care home, & now back on here again for this period of time. Don't know what I'd have done without it. Off to visiting now.

 

[DawnB52]

Thank you,everyone of you who replied,it is very much a case of waiting to see how she progresses or deteriorates,and thank you Purdy,I'm glad to hear that your stepdad came through and got well in spite of being so ill,it's not too late for me and also Clareglen to give up hope with regards to our parents even in the serious condition they are,so thank you for sharing that with us.

Clareglen,I didn't know whether to initially post this in the end of life section too,it's such a complicated and uncertain path we are all on,but the not knowing is almost unbearable to deal with as much as the decline in their condition too,Did you have to push for answers to your concerns too? My mum sounds as though she is in the same condition as yours,can't muster up enough strength to pull her self up in bed to even sip water,so I was helping her as much as she would let me.
I did speak to one of the junior doctors who was trying to get a cannula into mum,and he was rather vague about her condition,I guess I will have to wait until next week to speak to a senior doctor,if mum is still with us,this is much harder to deal with than I ever imagined,just do not know what is coming next.


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Crumbs I really feel for you, mum has done this to us three time now, been knocking on heavens door, and then a couple of days later bounce back, don't get me wrong we're glad she recovers from things but guess you know the stress, worry etc you go thru, it's like an emotional marathon. I hope you get some good news soon.

 

[Chaucer 1931]

Thanks Dawn,the situation with my mum has improved (the Drs words not mine),she's been discharged to come home,even though obviously not well to us who know her,won't open her eyes,has to be coerced into taking sips of water and will only eat a spoonful of ice cream with help.
Medically fit,(as the docs say)who would have thought it?!


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[clareglen]

My mum's still the same. Been in 5 weeks now. I fed her a bit of ice cream couple of days ago but it was difficult telling her to open her eyes, keep awake, chew it, swallow. I did wonder if she really wanted it although she did shake her head when she'd had enough. Nothing yesterday, couldn't even open her eyes. They wanted to insert a fresh NG tube. I said no, no more suffering. I argued with the junior doctor for a bit. Think I exhausted her arguments. Have heard nothing since & they haven't put it in. In her room one lady has been in 15 weeks (94) & an old school friend's mum longer than my mum (90). They all have bad dementia, one like my mum sleeps all the time, but can talk unlike my mum. They constantly have infections, are on antibiotics. Just existing.

 

[skaface]

clareglen what a horrible thing for you to have to go through. I'm dreading it happening to my mum and I hope something takes her quickly before we reach that stage, but as she comes from a very long-lived family I don't think that will happen so tidily.

My best's friend's mum died at the end of January having been in a care home for a couple of years - she'd had a massive stroke and then a series of smaller ones.

At the very end my friend simply said to her mum while she was sleeping if she felt she wanted to "go" then she could if she wanted to. That permission seemed to be all that she needed and she slipped away.

 

[clareglen]

At the very end my friend simply said to her mum while she was sleeping if she felt she wanted to "go" then she could if she wanted to. That permission seemed to be all that she needed and she slipped away.

I've done that & our elder from church came & prayed over her. Her obs (heart rate, O2, etc) are all in the normal range. It just seems there's been a deterioration in the dementia since the fall with the broken arm, or, as drs mentioned once, it could be something neurological that caused the fall hence why she's slept since, but it's not a stroke.

 

[Chaucer 1931]

Oh Claireglen, my heart goes out to you and your mum,you deserve better from the doctors,and I do back you all the way with your decision about the NG tube. You are wanting the best outcome for your mum,as I am mine and that is a peaceful end.
I think some doctors are not familiar with these conditions and possibly it doesn't sit well with many as it's their job to sustain life,maybe not comfortable with making the decision for people like our parents,but they have a duty of care to them and that should be saying enough is enough and it is kindness rather than prolonged suffering that they should be offering the patient and the family concerns. I know,mum isn't well and still has an infection/kidney probs,they discharged her saying her potassium levels were slightly low,but should be back to normal in a day or two! Trying to keep her hydrated and nourished is what I've got to contend with now,plus a uti that doesn't look like it's been resolved during her time in hosp. Happy days eh?!


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[clareglen]

plus a uti that doesn't look like it's been resolved during her time in hosp.

Our hospital is in special measures. They wouldn't send people home with a UTI. You have my sympathy.

 

[Chaucer 1931]

I think the hospital my mum was in should be placed in special measures to be honest! They've 'lost' her dentures and glasses,she was sent home in a cardigan with just a vest underneath-so where her tops have gone(the same way as her dentures and glasses,no doubt!) is anybody's guess. Well,I have tried my best to get her to take drink and again eat( half a spoon of jelly and carnation cream) and she's asleep for the remainder of the day,I have rung her GP this morning to request a visit,she has had enough-her words,she said she wanted to be left to die,when I put her to bed last night. This is so hard,how much more does she need to be put through?!


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