the long wait for something

[sue31]

thank you so much yes it was a no injury fall around six or seven weeks ago (time and life has stood still for me) I have to get through I cant leave her now. these connections are vital for me

Snap Jane!
You will do absolutely fine. When the end does come you can be certain you did all you possibly could for her.
2 months on & I am still a bit lost - not really knowing what to do with myself after spending so much time at her bedside. I’m retired so no work to occupy my brain.
Time is being taken up tho with the idiots that seem employed by the people I have to deal with sorting out her estate….. jeez it’s unbelievable!

 

[Jane3]

thank you I will see what today brings , not sure what will happen with work but I guess I will work it out cant apply myself to that yet or think about sorting things out other than the funeral directors.
Oh my the funeral.
just thank you fir your reply

 

[Collywobbles]

I am paralysed with guilt about the fall she only had one minor one then this one that has triggered the end of life

Please bear in mind that your Mum isn’t dying because she fell - she fell because she’s terminally ill.

As others have said, falls are a common part of dementia. You could have been standing next to her holding her hand with a carer on the other arm, and she still could have stumbled and fallen, with no way for you to keep her on her feet.

Dementia is a terminal illness and sudden declines can be triggered by things that healthy folks would just brush off - a minor cold, a UTI, a fright after something like choking when eating… There’s no way to predict or prevent all of them.

Please be kind to yourself. You’re with your Mum now, and that’s what she’ll occasionally be aware of. What’s happening now is all that matters, and what happened in the past wasn’t your fault.

Sending all good wishes.

 

[Woody54321]

As long as she’s comfortable & calm it’s the best you could possibly wish for her. My mums passing was so much easier for us due to this.
My father was in agony - very traumatic end as a victim of the dreaded cancer.
I often think of all the poor families that have to deal with sudden/ accidental deaths & don’t have time to prepare & say goodbye like we have.
Not that it lessens any families sense of loss & unfairness at the hand they have been dealt.

six months ago my father, mums main carer at home slipped in the bathroom and broke his neck, two weeks in intensive care before I had to authorise the withdrawal of life support still reeling from that and having to put mum in a home due to her advanced dementia which dad was struggling with but refused to let her go into a home. Sometimes it does not feel real, when I check their house I still expect dads greeting everything happened so fast.

 

[Jane3]

Woody so devastating for you sending all love.

 

[Jane3]

Thank you Collywobbles, yes but the shoulda woulda coulda's haunt me . I have to put them aside as much as I can . I suppose I was in denial and thought we had so much more time .
back with mum now and so glad to see her every minute I spend here, just heartbreaking to see her like ths no one deserves such an ending.
Pretty sure she doesn't know who I am but I am someone

 

[Jane3]

thank you all this helps so much you have no idea ...dark thoughts on my own.

 

[Muggers]

I’m at the same stage as you too and it’s just so cruel, mum has developed a cold too so I’m kind of waiting for it to hit her chest and bring things to a close, we are on the 7th week now after being told she had two weeks, no food now for five weeks, she is skeletal and it breaks my heart. You’re not alone in this nightmare xx

 

[Jacko123]

I know I don’t know any of you but I have been where you are now and I am thinking of you all

 

[mhw]

take huge comfort that you say she seemed so well and not this close to the end before the fall.
After almost 3 yrs of double incont /no comms/next to no and then totally no mobility you really dont want to watch a gradual ending. Its heart breaking for everyone, accept the patient who is long ago out of the evil reality of it.
it might not seem like it should be happening yet, and you say you arent ready, but believe me I'd be in your place a thousand times over than be in my head wishing that my mother would just die as her or me can take much more.
If you mum goes and doesnt rally from this episode, you will still love your mum, miss her, wish for her to be alive, to share a few more moments, you will be able to grieve her, at first remember her with tears and as with all loss eventually with smiles that will warm your heart when she enters your thoughts.
I wont.
I lost my real mum years ago, and I won't grieve the body that has made me watch its suffering for the last 12 yrs and turned me into someone who has nothing left to grieve only be relieved.

 

[Jane3]

I dont' know how long mum can go on in this , I feel for you MHW it has only been six weeks and I have been grieving for all of them, she seems so much weaker and sleeping more but the home say they have people that can stay like that fro prolonged periods of time.
I hope we all get a peaceful end to this nightmare....I'm so lost with all of this.
thank you

 

[Jane3]

mum is still going o two months now . I am struggling I am fine and positive when I am with her , when I am not I am questioning everything that has led to this moment. I am thankful when I get to sleep after coming back from my nighttime visit, i have to fall asleep watching something. I dread waking up as I know that I wont be able to get back to sleep. So the sleeps are getting shorter .
I have to stay strong and get through this with her. I am away from home and have never taken anything to help me sleep. I know without sleep I will be useless .
I'm sorry if this seems self-indulgent . thank you for reading

 

[Saralara]

mum is still going o two months now . I am struggling I am fine and positive when I am with her , when I am not I am questioning everything that has led to this moment. I am thankful when I get to sleep after coming back from my nighttime visit, i have to fall asleep watching something. I dread waking up as I know that I wont be able to get back to sleep. So the sleeps are getting shorter .
I have to stay strong and get through this with her. I am away from home and have never taken anything to help me sleep. I know without sleep I will be useless .
I'm sorry if this seems self-indulgent . thank you for reading

I really feel for you. Its like being in limbo and the emotional strain and shock of it all can be totally overwhelming. My mum had a couple of falls, deteriorated and was discharged to a home EOL with weeks to live. She was given lots of pain relief and sedation. She seemed to be fading away. It was unbearable. I felt powerless.
Got her reassessed and moved to a nursing home. Minimum medication now and she's able to engage, very alert at times when not having long "sleepy periods." Not mobile anymore as they stopped that during her hospital stay but now in a wheelchair for a few hours a day, can once again feed herself most days and eats well as opposed to the few spoonfuls of food she was having daily in the last care (?) home.
The change is remarkable, different staff, their observations, kindness, encouragement and care hasn't stopped the dementia and delirium/ decline confusion/disorientation etc. However she is safe and seems as the staff say, happily confused and not frightened and I can sleep more easily now.

 

[Jane3]

oh my goodness that is wonderful to hear. mum was discharged from hospital to the NH she is in now.
I don't think that mum could rally like that , the hospital and GP seem to be in agreement that she is EOL even though this was not the prognosis when she went into hospital, three separate doc said she was medically fit and just needed to get back on her feet.
two weeks later they said she was EOL. . they only tried to get her out of the bed once in hospital.
how did you get your mum reassessed?

 

[Saralara]

oh my goodness that is wonderful to hear. mum was discharged from hospital to the NH she is in now.
I don't think that mum could rally like that , the hospital and GP seem to be in agreement that she is EOL even though this was not the prognosis when she went into hospital, three separate doc said she was medically fit and just needed to get back on her feet.
two weeks later they said she was EOL. . they only tried to get her out of the bed once in hospital.
how did you get your mum reassessed?

We got the palliative care team involved and managed to get her to a hospice for a couple of weeks to regulate / stabilise her medication. They reckoned she was either dying or over sedated. Seriously!
They slowly reduced the doses and she became more communicative and started to pick up finger foods. They hoisted her into a wheelchair for initially an hour at a time as she was weak. We then searched for another nursing home. This time trusted our guts and the warmth of the staff won us over. They encourage her to do as much as she can on her good days and 'do' everything for her on sleepy days.

 

[Jane3]

I dont know what to think , mum is only on the lowest Fentanyl pain patch with a top up of paracatemol, she has been in the NH for a month now and is fading away.
i contacted the hospice and they said they did not take people on EOL that have been placed in NH's

 

[Saralara]

I dont know what to think , mum is only on the lowest Fentanyl pain patch with a top up of paracatemol, she has been in the NH for a month now and is fading away.
i contacted the hospice and they said they did not take people on EOL that have been placed in NH's

Oh gosh that's hard. My mum was fading, sleeping, not speaking, hardly eating.
Are the staff experienced? Can they offer things to stimulate her, get her interest? Can she sit up? Is she still in pain?

 

[Jane3]

Hi mum is chatting away when she is awake, eating tiny spoons of food fed to her by the staff and myself and taking tiny sips of liquid.
I have been in every day for the month that she has been there I massage her feet and head and brush her hair play music and talk to her I give her different things to hold. The staff just provide basic care
she cannot sit up unaided but is propped up by the bed and pillows.
She is sleeping at lot more now, but when she is awake she is constantly moving her duvet or reaching up and saying things about people past present and imaginary.
She will suddenly become worried and i constantly tell her everything is ok.
She has twinges of pain,.

 

[Sterlingtimes]

I visited the hospital this afternoon along with my wife. There is a large sign above my mother's bed marked "bedbound". She is wakeful now for about three minutes at a time. She recognises us, but she is otherwise confused. On a positive note, she does not appear to be in pain as before.

More than likely she will be transferred to a nursing home next week. I have no idea about how long this can go on.

 

[canary]

Hello @Jane3

I haven't been around for a couple of weeks, but I have read this thread through. Please forgive me if i have misunderstood, but it is not clear to me whether your mum is actively dying. You said that she is at EOL, but this does not necessarily mean that death is immanent. EOL just means the final stage before they pass away and this stage can go on for several months - i have even heard of it going on for a couple of years, although this is rare. This stage is typified by reducing appitite, increased sleeping, loss of mobility so that they usually become bed bound, increasing susceptibility to infections and pressure sores, and often get limb contractures (stiffness).

At the end of this final stage the change is usually quite obvious. The organs of the body start to slowly close down, they stop eating and drinking entirely and they pass into semi consciousness. Then there starts to be physical changes like the limbs becoming cold, mottling of the skin, the pupils dilating and finally, the breathing changes so that there are gaps between breaths.

These changes happen slowly over days or even weeks and even during this period they can rally more often than you would think. My MIL was given mere hours to live, but rallied and lived for another 4 months. I was told 3 times that my mum would not survive and was at EOL but each time she rallied and lived 14 months after the first episode. Mum also went 17 days with absolutely no food or fluid before she passed away.

Now, I am not saying that this will happen to you - your mum may indeed pass away quite quickly, but I wanted to explain that she might not.

I get the impression from your posts that you are worried that every time you visit might be the last and I am concerned that you are burning yourself out. You can't continue at this level. Please pace yourself for a long haul. The staff will recognise when your mum is actively dying and, believe me, it won't be over in a few minutes - you will have time to get there

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