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.

I am so very sorry @MortyFide.

How are you today Morty?

Hi Morty, my darling Mum died less than 2 years ago after a short illness (10 months from working full time to dying) and I thought I’d only ever remember those final days in the hospice where she barely looked herself. It is only a small offering of hope (a real slither) but I’m now remembering more of the usual her even though the ill her is still forefront. I am hoping the years of other memories continue to grow and cover over the other ones xx

Thanks for the lovely messages, as always.

I'm okay, Sunday evening was a rough one, I had a little cry then couldn't seem to stop. Yesterday was better - had to go and collect mum's belongings from the nursing home, which I was dreading, I felt sick all day in anticipation.

But once I got there it wasn't so bad, I chatted to mum as I was packing (and apologising as I threw things away, even though I can hear her saying JUST GET RID OF IT ALL!!).

I was a bit upset that they hadn't paid a little bit more respect toward her things - the cover her funeral dress had been in was scrunched at the bottom of the wardrobe, with its silk protector stuffed inside it and her handwritten label discarded. I know it's silly, it's just stuff that isn't needed but still, it's hers. Just be bloody nice to her things.

I'd taken her own feather duvet and pillows in when she first went there - her pillows were shoved in the bottom of the wardrobe with a suspicious looking stain on one of the pillowcases, unwashed. One corner of her duvet was covered in something sticky. There was shit on the back of her dressing gown, also unwashed.

All the nice toiletries I got for her were covered in soap scum so I couldn't salvage much. Her denture was still sat in its water so I had to empty the case before chucking it, I didn't really want to look at it as its such an intimate thing it hurts, but I had to obviously. The bathroom had a horrible sweet, sickly smell - there were two full, tied orange waste bags still in there, christ knows what was still in them. I dread to think.

I just kept thinking of mum, roaring with laughter at how awful it was. The nurse told me to hit the buzzer when I was done so they could see me back down, but when I did nobody came. I just waited patiently by the door, and after a few minutes (glad I wasn't a dying resident) eventually I heard a voice say, how come the bell is going for room 33?

As she rounded the corner she saw me with a start and I widened my eyes over my mask and said "She's come back to life."

Hahahaha, she nearly had a fit and mum would've laughed and laughed.

They helped me back to the car with all her bags and I didn't moan, I only made a joke about her dressing gown being in the rubbish bag (which they said they'd dispose of) because it still had shit on it and they looked a little embarrassed.

I thanked them for looking after her, they might be messy careless twats BUT they were always kind and attentive to mum the person, and for that I am grateful.

I took her clothes, freshly laundered, straight to the charity bins at the supermarket nearby, except for two nice sweaters and a pair of trousers that will fit me! I saved her double bed set and two throws, which are currently going through the wash - I can't bear the overpowering smell of the industrial soap powder and fabric softener and air freshener they use, I don't know if because it reminds me of the home but it makes me gag. I never want to smell it again.

Her handbag is the worst thing in the world. I glanced inside it and there are some crumpled tissues in it from when she last took it into the lounge with her. I quickly closed it and haven't looked back at it since, - I'm keeping it near me, and every now and then I give it a cuddle and tell mum it's ok, I've got your handbag (something I was always saying to her!).

Sorry for waffling, it's cathartic. I'm not crying much (only at her handbag and that people might have disrespected her things). I need to get on and start the phone calls now, sorting out the death certificate and the funeral etc. Need to make a list.

@MortyFide.

Handbags & personal stuff is the worst - don't feel you have to rush to sort that stuff. When my Mum died there were several boxes of letters & cards etc that I just put away for some time until I felt capable of dealing with them.

You have been a wonderful daughter & your Mum sounded such fun - you will think of her every day & all her sayings & reactions & may that be a comfort to you.

Sorry for your loss. So aware of the odd feelings of 'thank goodness, at last!' and 'oh no!' - at the same time. Sending good wishes and strength to you as you deal with it all.

Ahhhh... the handbag.
My mum was always panicking about where hers was.
No idea why.
There was nothing in it she ever needed.
But she always had to have it with her.

I'm so so sorry for your loss OP.
She is now at peace and I hope you are doing OK.
It's a really weird one.
You've lost your mum, but the reality is, that you lost her a while ago.
I did get to see my mum take her last breath and my dad and sister were with me so I had that support.
You don't appear to have any support and are having to do all of this on your own.

Just look after yourself.
The adrenalin will wear off once you have everything sorted so you need to keep your strength up.
RIP to your dear mum!
And huge ((((HUGS)))) and for you!

Oh that smell 😔

Pungent and chemical. I brought home my Grandma's stuff and put it all straight in the washing machine. The teddy on her bed even reeked of it and the smell made me gag. I have a strong stomach but smells are too evocative and that chemical, bleach with weird fake flower reek made me sick. I've still got her (nearly new) slippers sealed in a bag because they're not washable and I don't know what to do with them. I wanted to wear then but the smell won't go. I think psychologically, you have to wash the place off her things don't you? Put to bed the less pleasant memories?

Have you had any thoughts about the funeral? Did she know what she wanted?

Gah, the smell! Everything is washed and on the line yet I can smell it IN THE GARDEN. You're right, it's a pungent chemical smell of fake flowers which is a jolting reminder of the home, ugh. I even put bicarb in with the washing powder!

Maybe it'll fade over time. I've just realised there were some things missing - a bluebird bed set, and a pair of slippers. I suppose I'll have to call Nurse Ratchet.

Mum had dozens of Pat Butcher-esque earrings, which my stepdad loathed so she wore them a lot after he died. I put a pair in this morning in her honour, and when I stumbled across an old photo earlier, she is wearing the same ones in the picture.

She wasn't very specific about the funeral, no - but I have a telephone appointment with the funeral directors tomorrow, after I've registered the death, so I'll be able to discuss it with them presumably.

The GP just called to confirm that they had sorted the paperwork and emailed it to the registry office, and asked if I had any questions, which I thought was nice of them.

Monty, this is so poignant and seems to be bringing memories back for so many of us. I’d completely forgotten Mum’s handbag obsession until now.

The smell is something I remember vividly from the days I worked in hospitals, somehow the care home didn’t have it - that’s one of the reasons I chose it. If you can’t get rid of it, please don’t keep its source, smell is so evocative and it will make you feel worse.

Please don’t stress about things if you can help it. If it were me I’d forget about the missing duvet set and slippers, they’re part of a period of your mum’s life that’s best put firmly in the past.

It’s lovely that you’re wearing her earrings. I wear my mum’s wedding ring always, she wore it for over 64 years so part of her is always with me.

It’s very early days and this period was weird enough in normal times. Feel what you feel, everything is legitimate. As a very wise pp said, grief is proportionate to love. Your love for your mum, who sounds wonderful, resonates from everything you write.

Thinking of you Morty
It is such a tough time. My elder sister dealt with all the logistical things when our parents died, for which I am eternally grateful. I think I recall you saying that your brother lives abroad so it must be extra hard for you. There isn't a right or wrong way to react or to feel, but generally time does help to heal. I can't begin to describe the mixed emotions I had when my Mum died. Be sure to take some time to care for yourself, and lean on those who love you.

Hi @MortyFide

Your thread has come at an opportune moment for me. My 69 year old mother was rushed to hospital with acute confusion on Thursday and we are looking at a dementia/Alzheimer’s diagnosis once the delirium has cleared. Her behaviour has been so extreme that I have been allowed to be with her every day since. As awful as it is I am grateful to be here.

I will be reading and re-reading this thread over the coming months/years. You write beautifully about your relationship with/feelings about your mother and her condition. Thank you for sharing.

Gosh I hope my literary diarrhoea isn't upsetting anyone!

You're right about forgetting about the "stuff" @Alsohuman, even though abandoning things that were hers feels a bit weird. Anyway, I like that bed set.

I'm leaving everything I washed hanging out in the sun hoping I can roast the smell out. Just noticed one of mum's hairs on a scarf.

I feel like I've been on the phone or rummaging through paperwork ALL DAY...at 3pm I noticed I was still wearing the clothes I walked the dog in at 7am. I've just put something summery on and come out to the garden, now I've run out of calls to make until I've either got the death certificate, or got the old solicitors to renounce executorship and I can appoint myself as administrator.

@Blueemeraldagain, I'm so sorry you are now going through this - you haven't time to acclimatise, it must be a terrible thing to witness out of the blue. I take it they have ruled out a UTI - that's often the trigger for sudden and significant confusion? Alzheimer's and other types of dementia are usually quite gradual, but then I'm not a doctor!

If we can be of any help here on the thread do just ask. I'd be glad of the distraction.

Thank you. Her memory has been decreasing gradually but significantly for 6-8 months but she had a very sudden downturn on Thursday.
All her blood work etc has come back clear so far, still waiting for the virology results from a lumbar puncture to rule out a virus on the brain.

Ah okay...yes, the deterioration can happen in "dips" and they don't quite get back to where they were. So, things tootle along at an even keel and suddenly there'll be a big change.

My mum's first major dip was triggered by jet lag, following a trip to visit my brother; she stayed at that level for about 10 months then took another hit when she got lost in town, missed an appointment and scared herself. That was when she lost confidence and stopped socialising altogether over another period of months.

Then she had some kind of fall which had a huge impact on her mobility last summer, and that was the start of the biggest decline. The beginning of the end really, although it was 8 months ago.

I can't see I ever experienced a dip quite as sudden and significant as your mum's though - a lot can depend on how old they are when first diagnosed. I hope you get some answers soon.

My mum would have massive dips along her journey. Some were triggered by illness, and once by surgery (though I think back and she had delirium after surgery which lasted a couple of weeks 2 years before dementia became apparent). She'd actually become minimally response for 36-48 hours in one of these, and they never worked out if it was like seizure activity or just her brain having to rewire
She had fronto temporal dementia, and she had massive deficits which weren't immediately apparent earlier on- when diagnosed she could turn in a pretty good standard dementia screening test - but on the MOCA which had more language and executive function she absolutely tanked.
In the 12 years that I was navigating this world, the Elderly Parents board on MN was my saviour as no one in RL wanted to talk about it.

I'm sorry for your loss Morty. I hope that you'll take comfort in the knowledge that your Mum passed without pain or distress.
Be kind to yourself. xx

Funeral is on 12th June. I've done the usual things - registering the death etc - but mum specified her old solicitor as executor in the will, and I can't get any response from them.

I've posted about it separately - just to get a view on how long it would typically take and whether they might renounce - but already my post has been misread and two posters are lecturing me about not using the POA post death. I KNOW THAT, THAT'S WHY I'M DESPERATE TO SPEAK TO THE EXECUTORS!

Have you been on the elderly parents board Morty?
I've had some good support and advice there, I really don't know what is to be done here, but some MNers are really knowledgeable and there may be a way through all of this.

It's alright pianokicker, I'll work it out. I've done everything on my own for 4 years, why stop now!

I must say MN was a great support in the 4 weeks mum was between life and death.

Morty
Keep on keeping on.

My DMum made my DH and my sister's DH executors. The solicitor did all the paperwork, we just had to get them to sign the forms on the dotted line. DSis and I did all the practical heavy lifting. It worked well for us.

I managed to get through to the solicitors same day to check about them holding mum and dads wills - they had to take a message and get the right person to call me back, but it was only a few hours.

If they aren't answering the phone or email, I would send them a registered/ tracked letter and state that as they are not responding to you, you wish for them to renounce the executor and to pass the original will (if they hold it) and renouncement to you within 7 days else you will be lodging a formal complaint with the Law Society.

I've been doing mum and dads estate, and dads was very easy once I had all the figures from the bank accounts - it took me one evening to fill in all the IHT and probate forms online. Mums is a bit more complex as I'm using his unused IHT allowance and property disregard so have to fill out all the paper forms, but I certainly wouldn't say its been worth the £3500 for each of them that the solicitors would have charged

They got in touch yesterday, but not a word about renouncing or about fees - just asked me to send the original will (I have it here amongst mum's things, she must have intended to lodge it with the new solicitor but never did), the addresses and DOBs of all the beneficiaries, and all the details of mum's finances.

Am I entitled to ask what they will be charging? And under what contract of services?

I think that you are fully entitled to ask about fees, and if your mums estate, and the will are simple you can ask them to renounce - details here www.getprobate.com/can-i-remove-a-solicitor-acting-as-executor-of-a-will/. The solicitors who had my parents will charge £3500 for doing probate

When my dad died I had a real battle with the solicitor that drew up the will. I was the only executor and needed the will from the solicitor. They wanted £5k and a %age of the estate for doing the probate, I declined and had a hell of a job getting it out of them. I had to use their complaints procedure to get it in the end. Hopefully you won’t have that kind of hassle.

If I were you I’d refuse to send it to them and just tell them you’ll do the probate yourself. It’s very simple to do. Even I managed it.

Hope you’re doing as well as it sounds from your posts. The limbo you’re in is very weird. Hopefully some of the restrictions on funerals will have lifted in two weeks time. Thinking of you 💐