We're here again..

Hey ECA3 

I’m so sorry to hear things have taken a turn for the worst. 

It’s just so hard to know what’s around the corner isn’t it. My Dads confusion seriously ramped up in his last week… He could still talk but it was mostly nonsense or about something completely random. He had had the odd moment of confusion and word switching/forgetfulness throughout the course of the illness but in particular the last week was another level. His confusion was followed by stopping eating a few days later and then drinking, and then communicating at all… When he stopped eating we recognised he was truly in end of life. 

It’s so different for everyone. You’ll know all too well now that the changes bring new worries and concerns but you will find the strength to cope… Keep going ECA3. A day at a time.. you’ve  got this xxx 

I can really relate to where you are. My wife is at a similar stage. Her left side is totally gone and her left hand is all curled up. She does have speech still but often can't find certain words now and is starting to talk gibberish as GF92 mentions can happen near the end. 

Is your mum still eating and drinking? My wife has maybe a few spoonfuls of yoghurt in the whole day. The hospice team want me to keep a close eye on her swallowing as that can be indicative of being days from the end. We'd also have to get a syringe driver in at that stage to keep on top of her meds.

On Friday the hospice team asked the GP to come out. I didn't really see why as he's been calling regularly. What I didn't realise was that a Dr has to have seen the patient recently to be able to sign off the death certificate. So I guess the hospice team must think we're weeks away at most. 

Like you though I hope it's not weeks and weeks because this is really hard to watch. It's not selfish at all to think that. It sounds like your mum's quality of life is pretty minimal and the longer this phase goes on the more risk of discomfort for her.

Sending you a big virtual hug,

Chris 

This is where the group is so valuable, I didn't know about the GP thing but they did request a GP review on Friday, perhaps this is why.

I've also read alot about people detaching themselves from family members when they are dying, I truly believe this is happening in our case. A few close friends have popped by and have managed to get a few responses, all be it one word, but it's more than any of us have managed. I spent some time there last night and she just stared into space, I'm not very good at small talking but I tried my very best! It's so difficult to have her look through us like we don't exist, although I just hope somewhere in there she knows we are there.

Her eating is starting to subside, she was eating lots the past week or so but it is slowing up, as with everything else I guess. I've noticed her skin and nails have a yellow tinge to them now and I'm wondering if it's other organs starting to shut down (she's already incontinent and has been for some time). But no medical professional has told me this so we will wait and see. I feel by the end I'd be more qualified than some of them, but I guess we know our lived ones so much better that we instinctively know when something isn't right, and pick up on subtle changes which might otherwise be missed. 

I had a huge row as the care home didn't have the "just in case meds" in. So we now have those back in place and continue to watch and wait. 

Sending love to everyone xx 

Hi ECA3,

I can share some insight, as my mum also experienced a period of vacancy shortly before she passed. 

I think they best way I can describe it, is that it was she was behind a thick pane of glass, that just kept getting thicker and thicker each day.

It broke me every time I would chat to her, as it didnt feel like it was mum. Her responses would usually be completely irrelevant to what the topic was.  

I completely understand how draining it must be for you, I also don't think it is selfish at all, I think its a normal reaction to what is unfolding. 

I will say that this was around 2-3 weeks before mum passed ( my timelines are all over the place as I think my brain has just blocked a lot of it out). The decline was steady, as in she stayed as vacant as she was until she went into a very deep sleep. 

I hope the rest of your journey can be as peaceful and easy as they can possibly be in this situation, will be thinking of you.

Take care,

Alex 

Hi. 

My husband is in hospice care for the last 2 weeks and I keep wondering how do we know when it’s going to happen. Currently he is eating 3 times a day though appetite has definitely gone down. Sleeps pretty much thru the day. I hv him on diapers as he is not steady walking and has had few falls in the last 2 weeks and he refuses to sit on commode chair or use walking rail. He hardly speaks. May be a word or 2 to the guests but not much to family members. Short term memory is very weak and talking/understanding very poor. 
I didn’t know about the GP part either. When will GP come? Who asks them to come? Currently the district nurse comes once a week and I hv carers coming once a day. There isn’t anyone checking on his health status at the moment. 

HI ECA3

I'm so sorry to hear things are taking a downward turn.

Please don't beat yourself up by thinking "Stop the ride I just wanna get off." That is wholly natural and we've all been there or will likely be there. I know we reached that stage a few weeks before G passed and in  he last couple of weeks the hospice nurses who were visiting weekly even commented on it.  This journey is cruel and exhausting for all involved.

I don't have much to add to what the others have said above other than we were there too. In the last couple of weeks G made less and less sense and in the last week at home was noticeably quieter. Physically as I've said before he was incredible and during those last couple of weeks I was stressed stupid every time he escaped out for a walk. if anything had happened while he was out, he was incapable of saying what was wrong or to advise who to call. To be frank, he was a total nightmare of stubbornness!

It was a stroke/seizure that brought the beginning of the end for G and it happened during the night Saturday night/Sunday morning. That was when the just in case meds were worth their weight in gold. Between Sunday morning and Monday lunchtime when he was transferred by ambulance to the local hospice, the nurses used everything in the box. They fitted the first syringe driver on the Sunday and that was a godsend as it meant no more needles. Once we had been at the hospice for a couple of days, a second one was added. He really didn't know anything of those 5 days in the hospice as the nurses kept him well medicated.

No two stories are the same. One day at a time. One step at a time. That's all you can do. We were cautioned in the last couple of weeks that things could change very quickly. The speed of change when it came was a total whirlwind and quite overwhelming on the Sunday but that's when the nurses and hospice really come into their own and are absolute superstars.

Sending you a huge virtual hug and lots of strength.

love n hugs

Wee Me xx

Sending lots of love to you and your family. Watching a decline is so so hard, not knowing what's coming next.  Although I've heard people say the end with a gbm is quick,  I'm pretty sure for family and loved ones that isn't the case at all.  

I'm not there yet with my husband but definitely see things changing & dreading the day the time comes. 

Sending strength xxxx