End of life plan

[kenaidog]

Hi everyone, i got a call today from the nurse at my mothers home, i have to go in and talk about the end of life plan. She has had a rapid decline in the last few months and is now totally dependent on the carers.The nurse told me she is not swollowing very well so they have put her on liquid meds and food drinks, I just wanted to know what will they ask me, i want to prepare myself emotionally.
Obviously ive had a flood of tears tonight at the thought of what is to come, But i know its its something that no one can stop. ,My mother has lost the ability to sit up now and she just looks so out of it now, there are very little lucid moments and even when there are they are only for mins now and then.
It seems to have went over to fast and the progress has been so rapid with her , all the meds etc have done nothing for her at all. Its so heartbreaking to see it, I know everyone on here has been or will be or is going through the same thing. I just need to prepare my mind, ive thought for a few weeks now that this could be coming but i just want to know that if they are making a end of life plan, does that mean she is really close to the end.

 

[mrjelly]

We had to do this for my Dad last year and I think it's usually an admin thing they try and get sorted out some time before the actual end just in case there is a sudden crisis.

The issues that come up include what kind of treatment to give your Mum if she develops a life-threatening condition and under what circumstances you would or would not want her sent to hospital. In my Dad's case he suffered at least twice from dehydration that made him unresponsive and the GP sent him to hospital for antibiotics and intravenous rehydration. He had lost interest in food and drink and was also having trouble swallowing. The same pattern could have been repeated several times, but we knew this was not what he would have wanted.

We told the GP and the home we wanted Dad only to be sent to hospital for pain relief if that could not be provided in the home and that he should not be given any other life-sustaining treatment. There were special end-of-life subcutaneous painkillers ordered for him and kept in a cupboard in case they were needed.

In the end, things went as expected and he drifted off as peacefully as we could have wished.

 

[CeliaThePoet]

Hard Choices

I'm sorry to hear this. It's very hard. In my case, I have documents and discussions under my belt over years with Mom and I know she wants nothing to prolong her life (quite the opposite!). If the details of these decisions are new for you, though, many recommend this pamphlet which is straight talking about each medical decision.

https://www.stjosephhospicefoundation.org/images/pdfs/HardChoices.pdf

 

[angelface]

The CH may ask about a 'do not resusitate' order if they have not already done so.

 

[LYN T]

I'm so sorry that you are worried about this; I also found it very upsetting but strangely relieved that I had made the correct decisions for Pete. i.e. no admittance to hospital (except for broken bones) No resuscitation, and palliative care to be given in the care home he was in. All pain killers to be used to keep him comfortable.

Make sure the GP is aware and it's written in your Mum's file.

Love

Lyn T XX

 

[flower1]

Hi everyone, i got a call today from the nurse at my mothers home, i have to go in and talk about the end of life plan. She has had a rapid decline in the last few months and is now totally dependent on the carers.The nurse told me she is not swollowing very well so they have put her on liquid meds and food drinks, I just wanted to know what will they ask me, i want to prepare myself emotionally.
Obviously ive had a flood of tears tonight at the thought of what is to come, But i know its its something that no one can stop. ,My mother has lost the ability to sit up now and she just looks so out of it now, there are very little lucid moments and even when there are they are only for mins now and then.
It seems to have went over to fast and the progress has been so rapid with her , all the meds etc have done nothing for her at all. Its so heartbreaking to see it, I know everyone on here has been or will be or is going through the same thing. I just need to prepare my mind, ive thought for a few weeks now that this could be coming but i just want to know that if they are making a end of life plan, does that mean she is really close to the end.

Hi, I had to do this for my Mum at least 2 years ago (she has been in nursing home for 5 years). It does hit you hard when you are having to make these decisions and made me very tearful. All I kept thinking was how long has Mum got now but one thing I have learnt with dementia is that it throws you on an emotional roller coaster. I get called in regular to say doctor has been called, mum not eating, more antibiotics for chest infection or uti then she seems to settle again. My mum has been in last/severe stage vascular dementia now for 2 years and I cannot believe that it has lasted this long (without sounding harsh) as it is heartbreaking. Still feel the end of life plan is important for when the end does come so that a clear directive is done and it helps us as I know my emotions and thoughts will be all over the place. My heart goes out to you and anybody else who is going through this. I hope this helps and take care xx

 

[kenaidog]

Ok thanks for the help. I think looking at her and the way she is now that this is a thing they feel will be necessary sooner rather than later unfortunately. I noticed a few weeks ago that one of the carers who is usually a right grumpy moo, was so nice to her and just so different, she even said my mother could have anything she liked to eat, which i know from experience of when my dad died was a sign to me that the end was coming round, even though he died of cancer.
She looks so gaunt right now, i was giving her some choc the other day and all of a sudden she just stopped eating it, there was no movement at all she just sat there , head down and the choc dribbling from her mouth as it melted, so i wiped it away.
Its strange the things that can make you cry though isnt it, I was holding her hand and smoothing my thumb over her hand , you know for comfort for her and she did it back to me and i almost cried.It will be so strange when i dont have her anymore.

 

[Fred Flintstone]

I can't add much from my own experience here.

Given a choice, I'd like my dad to pass away quietly in his favourite armchair, watching the rugby on television.

Failing that, a good peaceful end. Aggressive medical treatment in an acute ward in a hospital would make him unhappy, but I wouldn't want - say - a broken bone to be left untreated, or anything which might remove discomfort to be withheld.

We will all meet our deaths. Traditionally, St Francis is said to have greeted his own as "sister Death", a sibling to brothers Wind and Air, and to sister Water (who is so precious, useful, pure and humble).

 

[kenaidog]

Yes i agree, i know there is no return and i have had to explain that to my brother.You cant do anything for them now and if the worst came to the worst and they had to do drastic stuff to keep her alive, i know it would be pointless.
When my dad died i felt so strong in my mind that he could still have been hear for longer if we had no agreed to him being given morphine, which in the end is what actually kills them. At the time of course i didnt know this, i was concerned about him not being in pain, so they gave as much as they could be i later found out what it does.No one can go on forever and we have to let go as much as we dont want too. Its hard for your mind to deal with i suppose, its just the very fact that one min they are there and the next gone forever.Its like this disease really, one day your loved one is there with you and they know who you are and then boom its all gone and only you are left with the memories of what has been before.
Ive found that during this illness i compare so many people of the same age and it astounds me at how well they are and the difference is huge, but when your at this stage in the disease you have no life at all, you are a shell, a body that a moments passing mindfullness appears and then its gone again.
I look at the others in the home and i feel sorry for that shell. the dwindling of that mind and the person who once was, i look at them and think how awfull it must be to be trapped in a body that is no longer any use because they mind is dying. What life is that for them. I wouldnt wish this disease or any other for that matter on anyone, its a sad sad life to leed for all those that it affects.

 

[Witzend]

I was asked to a similar meeting at my mother's care home. And it was a relief to me in a way, since she was already 96 and had had advanced AD for quite a while. She has a very strong constitution and there is nothing wrong with her apart from dementia, but I had dreaded 'something happening' and that they would whip her into hospital, which I know she would find very distressing - it was quite bad enough at A and E after the last fall. She had not a clue where she was or what was going on, and was quite unable to cooperate with anything.
We agreed that except for anything like another broken hip, God forbid, it will be palliative care only, to keep her as comfortable as possible in familiar surroundings at the care home. In other words, Nature should be allowed to take its course, which we agreed would be the kindest thing for her at this stage.

 

[Jessbow]

Prepare yourself to be asked if you have a preference for funeral director. Sounds like a crass question when they ask it, but it means they wont have to ask you when the time comes when you wont be able to recall the name for love nor money.

 

[Quilty]

In this situation i am very lucky. My mum made her feelings known very early when she also set up power of attorney. She also spoke to her gp and i did too. Its the only sure thing in life that one day we all die. These coversations need to happen. I am 49 and fit but my family know i want cremated when i die and my ashes scattered in the Clyde river. Knowing what she wants wont make the end easier but i wont be riddled with guilt about what to do. Love to all TPers going through this terrible time.