Sudden decline : tough decisions

[Auski]

I'm at a difficult crossroads and not sure what to do.
My mum has late stage Alzheimer's and recently moved in to ch. it's been a very rapid decline since Dec.

Prior to Dec dad was her main carer and they both lived at home. Mum became doubly incontinent towards the end of last year and has been unable to talk and hold conversation for a long while.
She fell and broke her hip in Jan, was moved to Psych ward in Feb after increasingly aggressive behaviour and more recently in to ch.

Since moving to the ch mum will now no longer walk - physically she was very fit until she broke her hip, she's only 68. She was walking well post operation but has suddenly stopped wanting to walk. She's had follow up X-rays which showed everything as normal so not sure what's causing it.
Ch have advised it's unlikely she'll walk again.
This week she went downhill further - high temp and unresponsiveness. Doc administered antibiotics but yet to see the effect.
She's lost a lot of weight again in spite of regaining whilst in the Physch ward, and the nurses at the ch now advise she can no longer eat unaided.
I'm so shocked and saddened by such a rapid decline.

I live in Australia (have done for the past 10 years) and have 2 small children. I was back in the UK last year for 3 months to help sort out care for mum, and also saw them over Xmas.

I had flights booked to come back to the UK in Aug but now I'm thinking that I should go sooner. I'm alarmed that things have been going downhill so quickly.

Tough decision is whether to go now and how long to go for. Staying indefinitely could be an option but would mean so much to sort out as hubby and I have work here and the kids, house etc.

Does the stage mum is at sound familiar to anyone?
I guess I'm looking for some guidance from experience as to whether this sounds close to end stages.

I desperately want to see mum but trying to figure out how to sort everything else out. Feeling massively confused at the moment. Any advice would be much appreciated....

Thanks for reading.

 

[starryuk]

Hi Auski,

I am sorry to hear about your mum. It is so difficult when you live so far away, isn't it? And no one can say for certain how long this stage will last for her.

If you can manage it, (and afford it), could you go now for a couple of weeks and still keep your August plan? You are desperate to see your mum, so go if you can. I say this only because you may have regrets if something happens to her before August and it would be nice to see her and your dad anyway,wouldn't it?

Best wishes

Ps. I was in the opposite situation with mum in Australia and was always relieved when I had made that journey to see her again, much as I hated the 24 hours on a plane.

 

[canary]

Hello Auski
Im so sorry to hear about your mum and its hard when things happen suddenly.
Im sure you realise that losing the ability to walk and not being able to feed yourself are symptoms of late stage dementia. Unfortunately and general aneasthetic and any sort of infection can advance the progression of dementia, often very quickly, and I think that is what has happened here. I hear your concern, but dementia is so unpredictable. Mum got pneumonia after Christmas and I was told to expect the worst, but 6 months later she is still here!

You have some tough choices here and obviously I dont know your financial and commitment details, but what I will say is - whatever you decide and whatever happens, DO NOT FEEL GUILTY. You can only do what you can do.

 

[Auski]

Thanks for your replies.

Still trying to decide whether to return now or not - I'll make a decision in the next day or so.

I'm seriously concerned at how quickly mum has gone downhill.
3 weeks ago she was pacing around and generally well, we've now been told that it's unlikely she'll walk again and yesterday she slept for most of the day.

I know the infection has probably knocked her for six, but can't believe the change in just 3 weeks.

She was very dehydrated yesterday and didn't eat. I'm concerned that she's not been getting the care that she needs since moving into the ch.

I know it's not a hospital with constant monitoring, but can anyone shed some light on how much care she should be receiving?
The staff there don't seem to know what's going on half the time, confusion about what the infection was from, why she's no longer walking etc.

 

[starryuk]

I really feel for you, Auski. So frustrating being so far away and unable to do anything.

Can you kick up a bit of a fuss with the manager at the CH and get her/him to push the doctor for different abs and to ask what they are doing about the dehydration? Is your dad able to talk to the doctor?

Do you think your mum has stopped walking simply because she feels ill? That's what happened whenever my mum started a uti/chest infection.

I think in care homes, they just follow doctor's orders. If they are worried they call an ambulance and send them off to hospital. They don't take on a nursing role themselves and the general care staff wouldn't know much about the medication. There is usually a senior carer who dispenses and knows a bit more.

 

[Canadian Joanne]

I would definitely have a serious discussion with the manager. Dehydration is a dangerous thing. Your mother should be encouraged to drink, if only a few mouthfuls, every 15 minutes or so. How is your dad in all this? Is he able to coax her to drink and eat? Never mind a balanced meal for now, go for ice cream or any treats your mother really likes.

As for the rapid decline, the infection surely caused a lot of that. But just because your mother is in a wheelchair and cannot feed herself does not mean that the end is approaching. My mother has been in a wheelchair for 10 years now and hasn't been able to feed herself for 8 or 9 years. With this damned disease, we never know.

 

[CeliaThePoet]

A hip break in the elderly is often the straw that breaks the camel's back....not immediate, but serious consequences. Wishing you strength.

 

[lemonjuice]

I know you've probably made the decision by now looking at the date of your posts.

But can I just say that a prior rapid decline doesn't necessarily mean the time will be short.
4 years ago when Mum was admitted to hospital after an extended period of unconsciousness (Vascular Dementia caused by small vessel disease) it took her about 3 months to really recover and that was not as good as before the incident.

I've known some people live for years with many emergencies, which they 'come through' so it may be by the time a few months have passed her condition will improve as a friend's mother did after breaking her hip over 2 years ago. She's still here and actually better than my own mother.

 

[Lets_Stop_Time]

Familiar

Sounds familiar. My MIL has been this way you've described your mother for months now. She can't talk, walk (nothing physically wrong it's a mental thing we assume now), hoisted up and down, wheeled around in a chair, fed dinners and given drinks regularly.
The CH have charts they fill in when she's eaten and drank, when's she's been toilet etc etc maybe they have same for your mother.
This state of being seems another progression in this disease and not always a sudden end as it seems your asking, but we are told a big seizure tomorrow could be the end or she could stay this while for a period of weeks, months, years.