She rallied again

[trus]

Hi all,

LO had a third episode of unresponsiveness in the last 2 months. This time with a fit and horrendous distressed screaming (ambulace/a&e involved etc). Each time they happened it floored her, she goes on sleeping non stop and not eating or drinking.

This time it was 3 days of sleeping pretty much 24hr a day and not eating or drinking which is much longer than the previous episodes.

She is on anti epileptic meds now and after she rested up she is up and happy and has a surprising alertness back, the speech makes sense most of the time now and is very clear.

Not sure if this is just lucidity or the medications are helping her brain to function.

Her appetite has not been great anyways and she has been loosing weight steady over the last year. Her arms and legs are pretty much bones covered with skin. She is eating OK now - well, for what she normally eats.

GPs said she developed a loud heart murmur recently and sounds like has some fluid in her lungs.
Since Xmas she has every now and again NO urine output for up to 24hr a day, which doesn't seem to relate to how much she drinks. On the contrary other days she seems to produce an unbelievable amount of urine compared to what she drinks.

I find this rollecoaster so difficult, she clearly doesn't have anything nice left to look forward to apart from inability to swallow and being non verbal 100 percent of the time. We have all other symptoms of the last stage of dementia. I see these weird cycles happening with her body that seem to grow in intensity...

How long have your LOs went on like this? It's heartbreaking seeing fade away so slowly

 

[SAP]

Hi @trus, I have no experience of this as yet but just wanted to acknowledge your post and send some virtual support.

 

[isabelle8178]

I’m watching the same thing happen to my lo. I believe mine is further along though. It is awful. She is all skin and bones and bruises because skin is so thin. She has been non verbal for over a year now. She will say parts of words but doesn’t make sense at all. She is bed ridden as well. I don’t know how long this goes on. It is truly heart breaking.

 

[SeaSwallow]

Hello @trus i am so sorry that you are going through this. I do not have any experience of this but just wanted to offer you some support and to remind you to try and look after yourself also.
As you said @isabelle8178 it must be truly heartbreaking to watch.

 

[Chaplin]

Hi, I’m sorry you are in this position with your LO. Is it worth speaking with her GP, asking for a medication review. Appreciate anti epileptic drugs are now essential but is there other meds which could be removed that would not cause her any pain or medical emergency?

In my mum’s situation the nursing staff told us in September they thought mum was no in the final months of her life, due to frailty, falls and lack of food intake. The GP discussed EOL care with me in November and removed all meds which were no longer providing a benefit to her. Mum died peacefully in December, only spending the final week in bed.

As painful as it is losing her, it was a relief she no longer had to suffer the daily confusion dementia caused, along with having to rely on people to do everything for her. Mum was always so independent and asking for help was a struggle for her.

Sadly none of us can predict how long this end stage will last but just remember to take care of yourself too during this phase as you cannot pour from an empty vessel. Take care,

 

[Eare]

My mum is pretty much the same and just went through a period of not eating and drinking for 3 days. Now she is eating and drinking again. When she remembers how to drink that is. We are having to use a straw now as sippy cups and syringes are not working for her anymore. So now we have to go through 10 minutes of her blowing through the straw before she accidentally sucks and then realises what she needs to do. She is the same with no urine for hours and hours (12 hours was her record) despite drinking. And then sometimes she drinks very little but will have a ridiculously large amount of urine. The only thing left for her is forgetting how to swallow as she has everything else gone. I genuinely don't understand how her body keeps going.

 

[LES2211]

I am so sorry to read this. My Mum has just started having bad episodes and it is so very upsetting. I really feel for you. I am not sure how I will cope as it goes on as I'm already broken emotionally. Its so very sad. I will keep you in my thoughts