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I need some honesty.............

JoannePat

Registered User
Jan 24, 2019
56
Hi every one,

I have googled and read and now I need someone to be straight with me and I know someone here will help!

My mum has, what seems, advanced dementia. We don't know if it is vascular or alzheimers. The hospital have recently changed her epilepsy drugs (prescribed after the first stroke, which bought on the seizures) and so they won't do a brain scan until December.

She has been in a home for 4 weeks now as my dad cannot be her full time carer (he is 84).

Up until yesterday she has recognised us, sat (awkwardly) in a chair and been able to communicate(ish).

Yesterday she didn't react to us, she is rigid from the shoulders up, with her head back, her teeth are clasped, she didn't speak and gulped loudly when I gave her some water.

Today I called and the CH have told me that there has been no change for the better and that this morning she was choking and couldn't swallow.

She is being seen by the dr this afternoon and I am waiting for a call to give me some news.

I hate to see her like this, trapped in this body that can't move and a head that is so confused.

Should I start preparing my dad for the fact that she may not make Christmas? I hope this doesn't sound cold hearted, but he keeps referring to her coming home and I don't think thats going to happen. Or could she live like this for another 5 years?

Sorry to put you on the spot!

Jxxxxxxxxxxxxxxxxxxx
 

canary

Registered User
Feb 25, 2014
11,617
South coast
I am so sorry to hear about your mum

The trouble with dementia is there is no knowing. Its like a roller coaster. I was told 3 times in mums final year that she had reached End of Life and then she bounced back. Eventually, of course, she didnt, but I kept expecting her to.
It may be time to have a very frank and honest discussion with her doctor. Also think about getting her a DNR (Do Not Resuscitate) and perhaps discuss about when/whether she should go to hospital in future. When mum reached a similar stage the doctor and I agreed that she should only go to hospital for broken bones to prevent her being in pain. We decided that if she got an infection she should take oral antibiotics, but if that didnt work or she couldnt swallow them, then she should not go to hospital for IV antibiotics. I do hope I havent been too honest with you about this, but these are things to think of.

I honestly think that you will have to play the waiting game and see what happens. I really dont think she will be going home, though.........

((((((((((((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))))))))))))))))
 

nae sporran

Volunteer Host
Oct 29, 2014
6,550
Bristol
So sorry your mum is deteriorating so badly, JoannePat. I can't really give an honest answer either, as my OH who has vascular dementia seems to be really ill every winter and back to a new normal by the spring. It is so hard for you though, and for your dad, so can only hope the doctor has some good news or at least a treatment for whatever is ailing your mum.
 

JoannePat

Registered User
Jan 24, 2019
56
Thank you both so much for your honesty. @canary, i think i need to discuss the DNR with my dad. Its something that I have obviously thought about, but as her next of kin i assume he has to make the decision. Although he wouldn't even sign the form for the bed band, i had to!

Its a horrible just waiting and never knowing, how many bad days? How much does she know? Will she ever recognise us again? How long is a piece of string?!

x
 

canary

Registered User
Feb 25, 2014
11,617
South coast
Something I want to mention is that at this stage they often lose the ability to move their facial muscles properly. When they try to smile it often comes out like a grimace and sometimes people think they are in pain when they are not.
 

nitram

Registered User
Apr 6, 2011
19,901
North Manchester
As other have said it can be a roller coaster.
Quite often the final stage is triggered by an acute event - a fall, aspiration pneumonia, AKI (acute kidney injury),....
Does your mum have any significant comorbidities?

Try and have a serious with her GP, if you don't have H&W LPA and the GP will will not discuss with you try the 'typically what is the situation' - it may work.

As regards what you tell your dad my approach would be for the time being wait and see how things play out.
At his age, and presumable that of your mum, he will be aware of both her and his mortality.
If you suggest she 'might not make Christmas' he may take this as a definite 'will not make Christmas' which could lead to all sorts of problems..
 

JoannePat

Registered User
Jan 24, 2019
56
Quick update! We heard from the CH earlier this evening and they were concerned about my mum. They called an ambulance and when the dr saw her he said that there maybe a conflict with her meds, so they have taken her in to run some tests.

I am exhausted with all this and can't even imagine how my mum feels.

Heres to another sleepless night!

xxx
 

Philbo

Registered User
Feb 28, 2017
772
Kent
Quick update! We heard from the CH earlier this evening and they were concerned about my mum. They called an ambulance and when the dr saw her he said that there maybe a conflict with her meds, so they have taken her in to run some tests.

I am exhausted with all this and can't even imagine how my mum feels.

Heres to another sleepless night!

xxx
So sorry you are all going through this.:(

Not sure how you dad would feel but it may be worth considering getting the hospital consultant to provide you with a DNAR form?

When my wife was recently admitted to hospital with a UTI, whilst in respite care, on my return from holiday the next day I spoke to the respite unit manager. The ambulance staff had asked about a DNR but as I wasn't there, no one could answer.

I took it for granted that as the respite unit were aware of my wife's Health and Welfare LPA, (which had the "including decisions about DNR" box signed), then they (or the medics) could act accordingly.

I didn't appreciate that this only relevant (or so I have been informed) if you (the attorney) is present when the decision is needed. If not, then a DNAR "form", issued by a GP or hospital consultant is required.

Whilst my wife was in hospital, I asked her consultant about this and she kindly provided the form, which cannot be copied. It was filed in her notes and transferred to her current temporary care home. In the event of any emergency, the form would be passed to the ambulance personnel.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
Quick update! We heard from the CH earlier this evening and they were concerned about my mum. They called an ambulance and when the dr saw her he said that there maybe a conflict with her meds, so they have taken her in to run some tests.

I am exhausted with all this and can't even imagine how my mum feels.

Heres to another sleepless night!

xxx
How are things today with your Mum?
Make sure you take care of yourself as well.
Thinking of you
((((Hugs)))))
 

JoannePat

Registered User
Jan 24, 2019
56
Another quick update! Thank you @Philbo and @DesperateofDevon for replying and sending your love.

We had a call from the hospital yesterday morning asking us to go straight up there. Obviously the worst goes through your head. We went tearing up there and no one explained anything, no one spoke to us and when I asked for the dr they just shrugged their shoulders.

BTW, we are based in Southern Spain, so there is a lot of shoulder shrugging!

Anyway, the CH called me yesterday afternoon and said the hospital were discharging mum.

She went back into the CH last night. The hospital has sent her back with her notes and the CH dr is reading them on Friday.

They haven't changed any of her meds.

Dad and I have a meeting with CH manager tomorrow to discuss mums care plan going forward. We have both decided there should be a DNR form signed.

Medical intervention will not help her any more. She is doubly incontinent, doesn't react, doesn't make eye contact, doesn't speak, can't feed herself and is now gagging on food and drink.

I am trying to deal with my dad, run a business and a home.

Somewhere there is a very large Gin with my name on it, but i won't start yet, as i may not stop!
 

canary

Registered User
Feb 25, 2014
11,617
South coast
((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))) @JoannePat

I think the thing to do now is find out whether thickened fluid and pureed food can be swallowed. Could a Speech and Language Therapist assess her to see whether this would help? Or has this been ruled out?
I am trying not to assume that she is at End of Life here as many people with dementia can and do bounce back,, but it does sound increasingly likely (sorry if that is too honest)
If the doctors do indeed think that she is at End of Life the next thing to talk over with them is pain relief
Pain relief is given at the end to make sure that they are kept comfortable and pain free. It is usually given in an injection as required or via a patch or a syringe driver to make sure that they have a constant steady supply so they are never in pain.
 

JoannePat

Registered User
Jan 24, 2019
56
@canary thank you so much for answering so quickly.

Isn't it amazing how honest you all are on here and yet the CH won't commit to anything.

I know they are probably afraid of legal battles or investigations by authorities, but even the CH manager said to me this morning, "well, she is a bit brighter this morning". What does that mean? I even said to her, will she ever be racing along the corridor, feeding herself or laughing and joking again, and she said well no.

So lets not kid each other, this horrid disease has got hold of her and its not letting go and she is fading in front of us - all of us.

Sorry just needed that rant!

xxxxx
 

Rosserk

Registered User
Jul 9, 2019
394
Another quick update! Thank you @Philbo and @DesperateofDevon for replying and sending your love.

We had a call from the hospital yesterday morning asking us to go straight up there. Obviously the worst goes through your head. We went tearing up there and no one explained anything, no one spoke to us and when I asked for the dr they just shrugged their shoulders.

BTW, we are based in Southern Spain, so there is a lot of shoulder shrugging!

Anyway, the CH called me yesterday afternoon and said the hospital were discharging mum.

She went back into the CH last night. The hospital has sent her back with her notes and the CH dr is reading them on Friday.

They haven't changed any of her meds.

Dad and I have a meeting with CH manager tomorrow to discuss mums care plan going forward. We have both decided there should be a DNR form signed.

Medical intervention will not help her any more. She is doubly incontinent, doesn't react, doesn't make eye contact, doesn't speak, can't feed herself and is now gagging on food and drink.

I am trying to deal with my dad, run a business and a home.

Somewhere there is a very large Gin with my name on it, but i won't start yet, as i may not stop!

Hi I’m sorry you’re having such a rotten time. My mother was prescribed Quetiapin a couple of days ago and as always I googled them to find out all about how they worked for dementia. From everything I’ve read these tablets are risky for dementia patients and can cause death! I immediately panicked and thought about not giving them to mum. Then when I thought about it more I realised the tablets were helping her and I don’t want to prolong her life when she is constantly tormented so taking the risk is kinder to her although hard for me. I know it’s not exactly the same problem you have but it’s similar in that I don’t want to prolong her miserable life so if the tablets make things easier then it’s worth the risk. Don’t prolong your mums life it’s kinder to let her go so she can be at peace. Sending you big hugs x