So, the doctor said this….

[MowgliGirl02]

Hey all.
Mum has mixed dementia, and has stopped eating. I posted a thread a few days ago about feeling guilty and afraid.
Now I’m well aware that the eating could very well be the dementia. I get that. But also she has thrush in her mouth and feels sick. Which could also mean she doesn’t fancy food.
I called the GP again today in regards to the sickness and after discussing it all she then asked me the question;

“Have you and your father discussed her end of life care with her?”

Now I know that they need to ask that question I get it. But my mother is very much alive, she knows who we are, where she is, and that she is poorly.

She doesn’t need to be asked about this yet, she could still pick up when she doesn’t feel sick anymore.

Or am I clutching at straws?

Either way it knocked me backwards. I’m not ready for that talk yet.

 

[jennifer1967]

Hey all.
Mum has mixed dementia, and has stopped eating. I posted a thread a few days ago about feeling guilty and afraid.
Now I’m well aware that the eating could very well be the dementia. I get that. But also she has thrush in her mouth and feels sick. Which could also mean she doesn’t fancy food.
I called the GP again today in regards to the sickness and after discussing it all she then asked me the question;

“Have you and your father discussed her end of life care with her?”

Now I know that they need to ask that question I get it. But my mother is very much alive, she knows who we are, where she is, and that she is poorly.

She doesn’t need to be asked about this yet, she could still pick up when she doesn’t feel sick anymore.

Or am I clutching at straws?

Either way it knocked me backwards. I’m not ready for that talk yet.

its so easy to treat thrush. it hurts and is sore so no wonder she doesnt want to eat. maybe milk or dairy could be tried?

 

[Jaded'n'faded]

The thrush should be treated. The feeling sick and not wanting to eat might be more complicated to solve.

I'm sorry you were taken aback when the GP asked you The Question - it's a shock. But it's something you should think about (what you feel about it I mean) and probably discuss it with your father too. Do you know what his thoughts are? Do you know what your mum would have wanted? It might not be the right time to discuss it with her but the GP was right to ask because it will have some bearing on what sort of investigations they may want to do regarding your mum feeling sick.

 

[StressedDaughter]

Mine went into hospital with a fall - they had the DNR talk with her and she agreed. But I don’t think she really understood as she was on the verge of delirium which manifested the day after.

 

[SAP]

It is a shock when you first get asked this question. I think it’s a just in case question not a definitive response to the situation at hand. I hope the thrush gets rested and your mum is more comfortable soon.

 

[Bettysue]

I’d make sure the thrush is being properly treated. My partner developed thrush which was badly mismanaged by his care home. Sadly it led to him stopping eating and an inevitable decline. I’m not sure what stage your mum is at but we were really taken aback by how quickly everything went downhill. I hope you can get the treatment your mum needs.

 

[RosieBB]

Hi - it’s so difficult isn’t it? The GP recently put a “just in case” box in to my parents’ house saying this is for nurses to use instead of mum always having to go into hospital. One of her carers slipped up the other day though and called it an “end of life” box. I got such a scare and immediately phoned GP who admitted it could be described this way as it contains morphine and similar. I had no idea and like you, I am still unwilling to believe we are at that stage. Sure I’m wrong but it does feel like they’ve given up on her. Interesting what you say about the thrush though as I’m wondering if this might be the case with mum too. She finds eating very difficult and this could be the reason now I think about it.

 

[jugglingmum]

So some thoughts that might help.

I've been on the forum over 10 years, the issue of oral thrush and not eating has come up, and most of the time once the thrush is treated, eating returns to 'normal' baseline.

The end of life care question is important, there is no good time to ask, and it's impossible to predict the end, it's better to think about it before hand than not have thought about it.

My below ramblings might not apply to every poster, but dementia is a degenerative illness.

The day my mum died she had been out of bed, sat in a chair, walking/shuffling with a frame, and joking with the GP on her weekly visit, she still knew me when I visited, and whilst her memory was shot, she could still converse about the weather. Her end of life/just in case pack had been prescribed 4 months earlier.

She took a sudden downturn, the district nurses were phoned to administer the end of life meds, and then the family were phoned. She passed away within a few hours.

The background to this is she had steadily been loosing weight since she arrived at the care home, the home gave her snacks, made sure she had foods they noticed she ate, gave her fortified drinks -substituted coffee for coffee flavoured ensure etc.

In Feb she caught covid (flu or a cold would have had the same effect), her sats plumeted, we were phoned and asked if we wanted her to go to hospital, as a family we said no. The just in case pack was prescribed, family several hours away travelled to see her, less than 24 hours later she had picked up. Just in case meds were kept as I was advised once prescribed kept whilst in date.

Prior to this the care home manager had talked to me about moving her across to the nursing home, I asked again afterwards and he said too frail to move, and better to stay with carers who knew her.

By mother's day in March she was in the dining room, enjoying fake alcohol, walking with her frame to the lounge etc,. The carers were pleased as she had eaten more than usual as they had a cooked breakfast to celebrate mother's day. Easter Sunday she wolfed down the chocolate provided. She was still losing weight.

In May I was taken to one side when visiting and told in the deputy manager's experience mum was near the end, it could be days, it could be weeks, it could be years. Her guess was 2 to 6 weeks.

A week later, mum caught a bad cold, family called to visit etc, and as in Feb, she rallied within a day or so. No need for just in case meds.

Then as detailed above, 2 weeks later she took a massive downturn, she never regained consciousness and this time district nurse called before family. She had a peaceful death.

I'm glad I knew what to expect from being on this forum, when I got the call in Feb I could help guide other family members as to what to expect. I was taken aback when I was asked if I wanted mum to go to hospital, but I also knew they wouldn't be asking if they didn't think we were at that point (she'd been to hospital previously from the care home).

It is never too early to have the conversation with the GP about end of life wishes with family when someone has dementia. I'd formulated plans a few years before we got there thanks to this forum.

I lost a son through still birth, as a result my husband and I discussed our outline funeral plans with each other. I wished I'd asked mum as when she had a dementia crisis 10 years before she finally died it was too late to ask her.

 

[MowgliGirl02]

Thank you all for the replies, and you are all absolutely right, and I’m so thankful I have this forum for me, and everyone else in our positions as carers and loved ones.
I guess in truth me saying I’m not ready, is actually just because I don’t know how to cope knowing that these questions and events are happening and do need answering.
I know for a fact me burying my head in the sand won’t stop time and won’t stop events from happening.
it’s just so hard.
I will talk to my dad, and of course my mum. I know it needs doing, sooner rather than later.
I’ll take the good days with the bad. Isn’t that what we all do?
Thank you Forum, sending love to you all.

 

[Lawson58]

It always surprises me a little when people think this question of end of life is inappropriate or shocking. At my age over the years, I have considered the question and the matter of my own death and from what I understand from my own older friends that this is actually quite common.

They (we) mostly seem to go through a process that takes years, not wanting to die but realising that there are worse things eg dementia, MND etc and come to terms with the notion that one day we will be dead. And of course, the older you get, the closer that day comes.

People might not wish to talk about it but maybe the thought processes are still there, that it may be difficult to discuss because of fear. Often the best way to overcome fear is to address that fear in whatever way is appropriate.

 

[Violet Jane]

The manager of the care home asked me about what I wanted for EOL when my mother entered the home. I wasn't offended (my mother lived for another four years). Interestingly, when, two years before her death, a consultant said something along the lines of making plans for EOL I was offended because I felt that he was implying that my mother was going to hospital repeatedly whereas she'd only been in hospital once since she'd entered the care home and once shortly before she entered the care home. I think that it's all a matter of approach, and tone in particular.

On the earlier occasion a doctor told me that she had put a DNAR in place and that I didn't have any say in the matter (the law since then has changed and now requires consultation if possible). At the time I actually agreed with the DNAR but I was offended by the doctor's brusque approach.

Dementia is a terminal illness and once someone starts having a lot of falls / infections and consequent admissions to hospital I do think that you need to consider EOL. People with dementia become frail after a while. They are not as physically robust as they would have been without the dementia. My mother was physically fit and strong when she entered the care home (at 83). She had no other health conditions and had few illnesses for most of her time in the home. However, she did become thin and frail and succumbed to a respiratory tract infection.