DM rushed into hospital and I feel so helpless

[MortyFide]

DM is 82 and in full time care with advanced Alzheimer's dementia. She's been declining slowly since the new year when she went into a private care home, with failing mobility, increasing frailty and constant falls.

Last night she lapsed into unconsciousness with shallow breathing, and was rushed to hospital to find that she was septic, with a "significant" UTI. She had almost finished a course of antibiotics at the home but her blood sugars were through the roof - turned out she was in retention and when the hospital catheterised her, pus poured out according to the doctor. Her chest x-ray was clear but she was so sick they warned that she might not last the night...but she did, and when I called this morning she was awake and had taken a little food. I chatted with the doctor who was so kind and helpful, I gave her some history, and she was cautiously optimistic that DM can get through this - with repeated warnings of course that she is weak and frail, and things can change rapidly. There is a DNR, and if DM deteriorates she won't go to critical care and won't be ventilated. I said DM and the family were fine with that, we discussed it all years ago.

Her oxygen sats are low and she has been tested for Covid19, but we won't have the results until tomorrow. They told me to call for an update this afternoon, so I did - but the phone was handed to someone who said she wasn't a nurse. This person said DM was "ok", had been "sitting in the chair" so she was a bit tired, and that I could speak to her. She passed the phone over and all I could hear was mum moaning, crying, saying "they're hurting me" and unable to speak properly. I tried to soothe her, told her she was ill but would get out soon, she just has to grin and bear it. She said my name, and I told her to just rest her eyes and sleep through everything.

Eventually someone took the phone from her and I asked to speak to the doctor for a proper update on her condition (is she responding to ab's, how's her oxygen, how's her temp, how's her kidney function, why is she slurring her words etc). She found the same doctor that I spoke to this morning, who told me very impatiently that there was no change since this morning (OK, but SHE told me to call again). I asked why she couldn't speak and she said patronisingly that "elderly folk do get confused when they're as unwell as she is." I said she's confused because she has advanced Alzheimer's, and that didn't explain why she couldn't speak. The doctor simply said. "Yes."

So I don't actually know how she is at all, just that she is "not a well lady" - so why did the nurses make her sit up in a chair then? Why can't she stay asleep absorbing IV ab's, insulin and glucose in peace, since she was septic less than 24 hours ago?

I just feel utterly distraught, normally I would be there holding her hand and speaking for her. I can't do anything, if she dies the last time I spoke to her will be when she was sick and frightened and I wasn't even with her.

Hi there,
I am sorry you are having such a dreadfully sad time. My mum died in November. She was in hospital for 4 weeks before we were able to bring her home for her last 48 hours. She was suffering, although we tried to make her comfortable. There were moments where she seemed peaceful and lucid. She had dementia and a whole host of other difficulties at the end.
I wanted to thank you really because i had forgotten how much she was suffering at the end and how much I had prayed for her to pass. Now she has been gone for such a while, I just wish she was here again - but now I am reminded why it's better that she isn't here as life was torture for her.
Oh love. I wish you strength. It's such a sad and lonely path to walk - even with family to support you, your grief is all your own. My advice to you would be to let the tears come when they come. I cried buckets in the weeks and days before she died and I am still crying probably every other day as I remember some little thing or other. Now it just happens while I am doing other stuff - cooking or walking to work or cleaning my teeth. It's alright. Its a bit of a cliche I suppose but really its the physical evidence of your love for each other. And that's something to be cherished.
Take care xx

Thanks Bluetrews as ever, and @Wren77.

Sorry it has brought back the bad memories for you, I wouldn't want to upset anyone! It's just cathartic for me to get it all out.

I have become more acclimatised to the dementia as she has declined over the last 10 months or so. Up to last July she was still going out to the shops on her bike (she was inconsistent and forgetful and had stopped socialising at that stage, but was still independent and living at home). Then she had her first major fall which affected her mobility, and she's been racing downhill ever since - she got more withdrawn and confused after the fall, and by December she was falling regularly and started wandering and falling outside in the dark. She went into residential care on New Year's Eve for her own safety, but her mobility was limited to shuffling around with a walker and she became more detached from reality. I stopped being able to have semi-normal chats with her, we could have a joke and a laugh but she was in a different time really. So I'd be trying to role play a part where she was (for example) an administrator in a school having to make 20 staff redundant in about 1965! No idea who I was playing in that scenario, but she was always anxious that she had so much work to finish. I'd assure her that I'd tell her boss that she needed the day off today as she was exhausted, that I'd cover for her, and she'd be relieved and could relax.

In recent weeks her general silly chatter had ceased and she was falling at the home every couple of days. They couldn't prevent her getting up and walking off without her walker so she'd just hit the deck after 2 steps.

Then she took a nasty UTI, developed sepsis and nearly died in the first 48 hours in hospital, which was when I started this thread 3 weeks ago. If it hadn't been for coronavirus I think she would still be in hospital now, but they are keen to discharge at the moment if clinically "well" (her infection had cleared and she was no longer compromised by the blood clots), hence her nursing care is being funded.

I keep reading other people's experiences and trying to second guess how much longer she has to suffer the horrible indignity of dementia and the bodily discomforts she's going through during this steep decline. Judging by what I've read, here and elsewhere, she has anything from a few days to months and months, depending on when another infection sets in and how severely.

My only (small) comfort is that she is in a lovely airy room, she can see out of the window and hear the birds, and she is being closely monitored and looked after by kind, trained, qualified people who know exactly what she needs in these final days/weeks/months. She hasn't been classified as "end of life" yet, but as her swallowing is failing now she can't be too far away. I'll feel better when I know she has a white card for morphine patches, midazolam, and anti-emetics.

If there's anything mum would hate more than pain or discomfort, it would be nausea! The last thing I can do for her is make sure she never has to feel sick, wherever she is.

I'm struggling to look at old photos or to reminisce too much, I think I'll break down and I can't afford that at the moment.

I've just read all this thread Mortyfide. You and your mum have both been through so much these last few weeks. I am glad that she is now in a place where she is getting good care in nice surroundings. I can't offer any practical advice - my own personal experience is that it is hard to tell. It's a lonely and strange in-between period. Sending you lots of supportive thoughts

Ah Morty

I hope this dosen't sound innaprropriate, but the bit about your mum living in 1065 made me smile.

My mum broke her hip in Feb and was delirious whilst hospitalised (she has some dementia too). The conversations were very similar to the ones you had with your mum, she had an urgent report to get to the head of department, then I would have to take some paper from her tray and pretend to be the post boy and take it away, this role play would go on for ages. Then she would tell me about all the lovely plant pots that were on the desk opposite hers (I think she was actually looking at all the medical paraphernalia hooked up to the bed opposite her). It was a small thing but at least she seemed happy in those moments.

Sorry, I didn't mean to derail your thread Morty. I've been following with interest as my mum is on a steep decline with parkinsons.

Oh mortyfide what a journey you are both on. Thank you for writing it, and sharing the rawness of it. I am finding it cathartic to read.

When my dm was in her last weeks so many people tried to offer 'comforting' words. From health professionals giving optimistic good news about minor but inconsequential improvements, to family or friends insisting that at least she was peaceful (she wasn't). I remember the guilt I felt when I tried to be realistic, as if I were wishing to hasten the end. At times the 'good news' felt like bad news, she was still dying, just dying more slowly. And I never knew quite how honest to be with well-meaning relatives, not even with my dsis - do you tell them how tortured and distressed your loved one is, or shelter them from the awful truth? My dsis (who lives far away) managed to be there for the last 2 peaceful sedated days, and your posts have reminded me how glad I am that she didn't see our Mum at her worst - we didn't both need to go through that, and thankfully I had my dh to support me (he had dropped off a clean nightie one evening and made the mistake of 'popping in to say good-night'. He came home shocked and ashen-faced and with a new understanding for what I was going through.)

Anyway, MortFide wishing peace and calm for your Mum, and for you. You both deserve it.

MortFide just to say you really haven't triggered any bad memories - it still feels so fresh even though 6 months have passed - I had just forgotten how much I wished for it to be over and then when it was over I wanted her back! And now reading your experience I am reminded that she is no longer suffering and that brings renewed peace.
Where your mum is sounds lovely and it's wonderful she is being cared for so well.
xx

That's ok @gondrinkin, it gave me a laugh - the funniest part of this particular conversation was when she insisted that one member of staff would need more notice because of her contract, but she couldn't think who it was. I thought for a moment (clutching wildly at straws) and said lamely, "I think you night be talking about Audrey."

Well she looked dumbstruck at my stupidity, looked over her glasses at me and said scathingly, "What are you talking about Cynthia."

Well I don't know do I mother, this is your delusion! No idea who Cynthia is either.

Another time I arrived and she threw her hands up in relief and said "Oh, am I pleased to see you. Now, listen to me. I DON'T WANT ANY PART OF IT. Do you hear me? Tell Daddy I'm having nothing to do with it."

I had to act as though I were her sister that day, she seemed to think our parents (long dead) were selling off a load of valuable property but the in-fighting over the proceeds was too much for her.

The thing is, none of these events were even loosely based in reality - she never worked in a school, her parents never owned a mansion. Alzheimer's is a strange disease, the brain slowly erodes away from the inside and they lose all the connections, one by one. But occasionally they come up with new scenarios.

Sorry to hear you experienced something similar @venusandmars. My brother lives overseas, he doesn't do terribly well with emotion and we're not close, but I have kept him up to date and I've been fairly blunt about it. He's done really well actually, he's said some very kind things and I'm amazed he has it in him!

You've really hit the nail on the head about feeling guilty for wishing they could pass away sooner, and that the "good news" of trivial improvements feels like bad news because it only means they are dying more slowly and will have to suffer for longer.

Mum is "peaceful" in the sense that she isn't crying out in pain, she isn't nasty or aggressive or shouting. She's just existing, and looking exhausted. But she is in some discomfort because she wriggles around a lot, I know she's sore and itchy down below and she tugs on her catheter all the time. She also spreads faeces around, which I can only handle thinking about in the context of her being in the final stages of dementia - my mum isn't really in there anymore. If she was she'd be mortified, poor woman!

Don't worry mum, I know that isn't you. Unless flinging shite is your last hurrah before you head off.

That is a very good point about the nighties actually - she had about 5 when she was on the dementia unit, but I've just realised - they might have to change her twice a day, if not more. Shall I get her a stack of them? The nursing manager didn't mention it.

I could call them but I'm not sure who's on on a Sunday...

Let us be one of the circles of strength around you.
I know there will be other circles, but we are here, as much as we can be.
Those of us in the know would hope MamaMorty can move into her blessed release soon. And her life will be complete.

mortyfide I coped with some of it by imagining her recessing through life (albeit at an ever increasing speed). She went through the equal adult phase when she would ask for my advise on things about money or the house etc. Then we had bad-tempered teenage times, interspersed with some reckless behaviour. There was a rather jolly primary school phase, then eventually through the bewildered toddler to the baby, unable to feed herself, incontinent, sleeping more. It helped me to feel tender to her, and compassionate, if I thought of her needs as similar to a young child.

And we did have some laughs. One day she asked: "venus, do you think it was real, or was I dreaming, that there was a dog on my bed?" "I think it was most likely a dream, Mum, they don't usually allow dogs into the hospital." "Oh that's a pity, there were 5 of them, and they were helping me to do the crossword on the computer..."

I know you said the nurse manager was harsh about the PPE, but I think so many nursing homes are really struggling with the new arrangements. One of my friend is a care home manager, and said that some staff find it difficult to remember the new routines. And yet it is so important to provide protection to every other vulnerable resident in the home. Doesn't stop you from feeling belittled, but I think a strict manager is good for the current times.

It’s heart breaking waiting for the end, simultaneously wanting the pain to end, but equally missing what is lost.
Your strength and love for her are evident right through the thread, I’m sure she’s very proud of the person that you are.

Thanks everyone, for your kind messages and for taking the time to post (on my thread which is mostly me rambling incoherently).

Sorry @gondrinkin - meant to say, I'm so sorry to hear of your mum's decline. How is she at the moment?

You're right @venusandmars, it is easier to think of her as reverting to toddler stage. I do have a horror that she'll stay like this for months though. You hear about it don't you - even my auntie, who was non-verbal, incontinent and unable to feed herself, went on for 10 years because she started early. She died 2 weeks ago with coronavirus, mercifully.

I've been scouring the Internet for nighties that are tumble dryable. I remember after they washed her again and popped her back in bed, she was wearing one of her own long sleeved tops. Shall I just take a pile of 10 nighties in to her?

How about teen-sized shortie PJs? Keeps the hands away without the long legs of PJs that are so awkward.
I highly doubt that she was still contagious by the time she was back at the resi home, so boss lady was being a bit jobsworth, frankly, and definitely lacking in compassion.
Colleagues have returned to duty 7 days after becoming symptomatic if recovered enough. (And have not managed to pass it on to me.)

@MortyFide
I read your thread when you posted a few weeks ago, but didn’t post because I had nothing useful or practical to add. I’m so sorry things have deteriorated thus, and I hope it’s not too much longer for your mum.

In the meantime, yes, I would buy a stack of night dresses. Damart do lots of different styles.

Shortie PJs...that's an idea, I suppose it might prevent or discourage easy access for her. Are they not harder for the nurses to undress and redress her in, as they've got to thread legs in and out? An over the head stretchy nightie seems less hassle, but you have seen far more of such things than I!

I called the home to ask but I got no answer. I also don't know how much weight she's lost - she looked thin in the face obviously, but although she was previously a 14 to 16, I couldn't see if she was significantly smaller or just a bit. I tried to ask if the manager knew from the notes how much weight she'd lost, but I couldn't get a word in edgeways.

You're right about her (the manager), I thought she was thinking of what I might bring in from outside, but then why wouldn't she insist that I was re-gowned to see her? She only wanted me to dump my PPE in mum's room, put on a new mask and sanitise my hands before going into the nurses station.

Even when I left I could hear her bollocking some other nurse in another room. Super efficient as I say, but horrible!

Being lenient to her- I think there is a lot of pressure on homes about infection control- she is probably getting equal pressure from above. Manners cost nothing though, nor does compassion.
Maybe take a selection of things- shortie pjs may be tricky, but if it prevents some investigating (what is this stuff next to my skin? It’s on my hands, I’ll wipe it off.... what’s that funny feeling....??) it may be worth it.
Keep on being kind to yourself.

Oh I'm just grumbling because she made me feel small, when I was already upset at the first sight of my mum after 2 months. Further back in the thread I was stunned at how she tore a strip off the hospital for poor practice, and secretly impressed at how passionately she was looking out for mum's best interests - and I told her as much.

I just didn't expect to be scolded by her at any point, let alone then. I wouldn't want to work for her, and I wouldn't invite her to a dinner party, but I'm very happy that she is in charge of mum's care. I suppose the only risk is that they get high turnover of staff as she has such impossibly high standards with no flexibility.

I might call them again tomorrow and take some advice about clothing - or maybe post on the dementia forum about what's best for her to wear now she's bedbound.

It was nice to see some smiles and laughs upthread, @venusandmars, @mortified, even if they were during pretty terrible times.
My mum isn't at an end of life stage yet, I'd say stage 5 parkinsons, she has good support, but I'm hoping too that she dosen't have to suffer this life for too much longer. It will be a relief all round when she goes.

for everyone here who's going through this (or has been there)

I'm a hca and can advise that stretchy nightdresses are the best, easy to whip on and off as an when and can be launderer quickly and easily. Sorry you are having to go through this

My thinking with the short PJs was not so much fabric to ruck up and be uncomfortable!

That's good to know @TheFutureMrsB, thank you - if I get her 6, then even if they have to change her 3 times a day she'll still have 3 more (plus her original ones) in reserve while those are being laundered. I've found some and they don't say specifically that they're tumble dryable, but they're cotton jersey so I'd expect them to survive.

I'm guessing if she's wearing pads, she isn't wearing her own underwear? Sorry if I'm being thick, I sort of assumed they must be like adult nappies...!

Maybe I'll get some shortie PJs for them to trial - if no good I guess they won't use them.

@gondrinkin It's hard, sorry you're going through it too. We can only wish for a swift and dignified end for them.

Just read the whole thread and touched by what a lovely daughter you are, brought up well obviously! Especially how you have been joining in with Mums fantasies, not trying to correct her as some people do. Wishing you strength for the weeks ahead xx

Thanks @HollysBush, much appreciated! Yes I was blessed with a strict but kind mum and a victorian but loving stepfather (dad is a whole other story ), they would expect me to do the right thing and be responsible and strong.

@HelloDulling I'm so sorry, somehow I missed your earlier post - I did indeed look at Damart because I know mum had an account with them! Ultimately theirs were nice but the short ones didn't look stretchy, so I ruled them out in the end. But I recognised them, I think she's already got a couple!

OMG Damart!
My primary school was next door to the Damart factory!

As you were!

Just read the whole thread too. It’s brought back my mum’s last days so vividly. She basically slept for the last eight days. She only got her end of life drugs when I pleaded with the out of hours doctor for them. She got them less than three days before she went.

I had the wishing she’d go and feeling guilty about it stuff going on too. My thoughts are with you @MortyFide, it’s awful at any time but now, when you can’t even be with her, it must be torture. 💐