Medications given in final hours

[Angel14]

Hi,
I'm a newcomer to this site, and have drawn strength from all of you who have contributed your personal stories. I lost my beloved Mum in Sept 2008, and despite receiving some bereavement counselling, am still struggling with coming to terms with certain aspects of her passing.
One of my main regrets is not being with her at the actual point of death. Mum survived longer than anyone had anticipated, and I think part of me thought (or hoped) that when we left that day at about 4pm, she would be still be alive the next day. I just wish we were told my the nursing home staff to hold on, as she is very likely to pass away in the next few hours. They must have known the signs. To us, and to most people, death is unchartered territory and you don't know how to deal with it; you are in such an emotional haze.
Another thing that haunts me is that because my poor Mum "started the dying process" for want of a better expression, 2 weeks before her eventual passing, we, her family, were aware it was becoming a long drawn out death and were adamant she should not be in any pain. We requested for her to be prescribed medication to ensure this was the case. As Mum had lost her ability to swallow, and we didn't want the pain of injections, a nursing relative of ours suggested a Fentalyn patch. This was taken up and (I'm told) a low doseage patch was administered. Although she was in the active stage of dying, my guilt remains over whether this was the right course of action. It is so hard to be involved in these ethical 'end of life' decisions, and I wondered if anyone else has experienced this, or something similar. I think about my Mother all the time. I know she loved me, and she knows I loved her, but I am struggling to get over these guilty feelings - I don't think I ever will.

 

[maryw]

Oh boy, do I recognise all those emotions!! I really feel for you and admire your courage in opening up after this time. I lost my own Mum end of Dec 2008. Similarly the hospital didn't communicate that they realised she was dying. I learnt from taking part in palliative care research on this forum that she did indeed present signs of near-death.

Palliative care, that's what it's all about and how we wish we could have organised it in the right setting for our loved one.

I'm sure you and I both did all we could AT THAT TIME for our loved ones. I too am having problems coming to terms with the fact that I wasn;t there when my Mum died and similarly I didn't visit her afterwards as I couldn't face going back on THAT ward.

I personally tell myself I couldn't have done more and my Mum knew that and she would hate me to be unhappy about things.

The past has gone and we must live in the present xxxxx

Hugs xxx

 

[jenniferpa]

Hi and welcome to Talking Point.

I don't know whether it's any help but many, many, many people have posted in the past that it was almost as if their loved one held on until the family had left the bedside and then chose that time to die. It may have been that this was the case with your mother.

Personally, I was just leaving the house to catch a plane to visit my mother when I got the call to say that she had died. In that case, the carer had said to her "Jenny will be here tomorrow" and my mother said "I don't want her to see me like this" and within a couple of hours she was dead. I have always felt that it was her decision.

As to the medication given - I think that anything that she was given that might have eased her passing is a positive not a negative. I realize that might not be how you feel, but I really believe it to be true.

Take care

 

[BeckyJan]

Hello Angel:

I am sorry you are still grieving deeply for your Mum.
You say you were not present - well there is a strong belief that some people need 'space' to die. Please do not torture yourself because you were not there at the moment of passing.

My husband is in the later stage of Alzheimers and, when it comes to his final moments, I hope he gets whatever pain relief is needed.

I do not believe you should feel guilty, BUT if you do maybe you need to see a bereavement councillor. Why not consult your GP for advice on this?

 

[Angel14]

Thanks Mary so much for those kind words. My sympathies to you too in your loss.
You are right in what you say, I am aware I am re-living the past, which my logical mind tells me is such a futile waste of time and energy, yet I can't seem to stop myself doing it. Rewinding the clock is not an option - that's the hard bit to accept. I think because I was so wrapped up with my Mum all my life (I was the baby of a very close-knit Irish family!), she became my priority when she became ill, and I poured all my resources into helping her. Now she is no longer here (and I don't have anyone else to look after), I feel there is no purpose to my life. I know that sounds dreadful, but that's how I feel. I can only hope that in time, I will find joy again in my life.
Thanks again, it was heartening to receive your reply so quickly.
Kind regards.

 

[larivy]

hi Angel
my Dad died 12years ago i was lucky to have been with him as we nursed him at home he was on a morphine push and we was told he could have it when ever we felt he needed it i gave him the last push and to this day although deep down i know it was not that that caused him to die i still feel very guilty and i think i always will but i have learnt to live with it now life does go on and he would have wanted me to live life to the fall you did all you could for your mum and im sure she would have wanted you to enjoy life try not to be to hard on yourself larivy

 

[Just thinking]

Hi Angel,
So sorry you've lost your lovely Mum. You may be being a little hard on yourself as it's not so long ago really and there's no set time for grieving. I agree it was upsetting not to be there at the precise moment, but even had you lovingly sat at her bedside day and night there would have been times when you'd of had to leave only for a few moments to 'attend your own needs' and it could have happened then. You did everything you could to ensure her comfort as you clearly adored your Mum and that shows through with every word you write. It's absolutely certain that she knew that she had a wonderful daughter who loved her and made ALL of her life one that she treasured. Give yourself time Angel and try to remember the happy loving moments you shared together.

 

[mad mel]

Hi Angel
I lost my Mum on my Birthday in 2008 and like you had gone home assured by the staff that she would last the weekend.I had said my goodbyes incase.
I was getting ready to return ,later that day,with my eldest son when I got the dreaded phonecall.
I feel guilty as I had told the nursing home not to give her anymore anti biotics,I knew it was time for her to go,just wish she had been at home with us.
Also like you I feel lost,lacking direction even though I have my own family to care for.
The first yearwent by in a daze and now in the second I am questioning every little thing.
It's so hard to move on is'nt it.
Take care
mel

 

[Angel14]

Thanks to you all so much for your support. It really helps to read that others have gone through similar situations, and are finding it just as hard to 'move on' - even after quite some time. It's only people who've lived through such a trauma that you can begin to understand. I feel I cannot continue to discuss it with friends and family because I'm sure they think I should be 'over it' by now. At least I am given the time and space to express myself on this forum, which I'm very grateful for that right now.
Kind regards, Anna.
By the way, does anyone know how to send a personal message to someone?

 

[Helen33]

Dear Anna,

I am sorry to hear that you are having such a difficult time with issues of guilt about your mum's passing My husband died in February of this year and he was badly let down by the system in the end and although I had been with him all the time I missed the moment of him leaving this earth because the nurses were complaining to each other about the day nurses I looked up to tell them to stop and when I looked down Alan had gone I was furious and told them that they had robbed me of this experience.

(and I don't have anyone else to look after), I feel there is no purpose to my life.

BUT YOU DO HAVE SOMEONE TO LOOK AFTER ANNA!! You have yourself to look after and you are precious. You are as precious as your mum and you can do something about this whereas you can't do anything about your mum now!!!

If you feel you need further counselling then ask for it.

Sending love and a (HUG)

 

[lesmisralbles]

Why should you be over it by now ?

As I have said, the next person that tells me that will get a thump on the nose.

When Ron came towards the end of his life, it was called "end of life care".
He had a morphine shunt in his shoulder, and it automaticaly gave him a dose, a very low dose, but I know he felt no pain.
He went to sleep.

I feel no guilt, I feel lost and empty. There is no right way or wrong way to grieve. You do what you do. I do not talk a lot about Ron to family, I think they are sick of me. So, I talk to Ron, he understands, he cannot talk back, but he never could get a word in anyway

All I do know is that Ron felt no pain. He fell asleep, and is now snoreing in his heaven, which he beleived in XX and keeping everyone else awake
I still wish I could hear that sound.

Barb X

 

[Lynne]

I do not talk a lot about Ron to family, I think they are sick of me.
So, I talk to Ron, he understands, he cannot talk back, but he never could get a word in anyway

Welcome back Barb, , I've missed you!

 

[Lynne]

Dear Angel

I too lost my Mum in Sept. 2008; I am also still struggling to accept the great hole left in my world even though, seemingly, I am moving on with my life.

I was with Mum when she died, and there were none of the medical interventions in our case. Makes no difference to how I feel; what we so-freely label "Guilt" is more accurately - if unfashionably - known as grieving. It doesn't happen overnight; the first year, with its anniversaries etc., may be the worst for some but it certainly isn't the last.
Be kind to yourself, you did the best you could and your Mum wouldn't want to be the cause of your pain & distress.

 

[zoet]

Hi Angel. Noone has the right to assume the length of time someone grieves for. Sadness and loss, regret, guilt, anger and overwhelming questions will eventually turn to peace and acceptance, although they may never truly leave us. I lost my mum 8 years ago, and my dad this January. The grief i feel for mum is exactly the same intensity as it is for my dad. "I too feel that others have expected me to get over it now." And outwardly i probably do appear to have done so. In my heart I have not.
I had to give permission for a Do Not Rescusitate order (kept in in my home for ambulances, doctors etc as Dad stayed with me until his death) which absolutely broke my heart.
I had to do it twice because he lasted longer than expected. I did it to retain his dignity and believe that would have been his wish. I have no guilt over that. I had the "end of life" drugs in place 12 weeks before he died, but did not need them until the last few hours.
Dad was close to death when i went to bed at 2am, and a nurse sat with him while I slept. I believe he chose to go when he did, later that morning about 11am, because he was waiting for me to say goodbye. They gave him morphine at 2.30 am because he became very agitated, a very small dose but enough to settle him. He didnt need any more. I am very grateful they did.

I feel very privilaged to have been able to be with him when he passed because I needed it as much as he did. But he definately chose his time Angel, as did your mum.

Sometimes i replay those moments in my head- (Im not sure why)- as you obviously do. You have absolutely NOTHING to feel guilty about. You were tender and loving and devoted and your mum would have known that. She would not want you to suffer in grief, but rather to learn how to carry on. Hold on to your precious memories of her. They are her gift to you, to call upon when you are sad, to give you comfort and strength when you need it. They are how she lives on. Your pain cannot last forever with the memories of her in your heart. xxx

 

[PostTenebrasLux]

Hello Anna,

My beloved mother, who died nearly 3 years ago (not of AD) lives by my side: her presence sits on my shoulder, always invisible to others, nobody else can hear her, but I can see, feel and hear her. Mother's voice is that little voice of guidance and comfort. If I go food shopping, I can feel her advising against getting more chocolate or that the blue dress is better than the green one. We had a tempestuous relationship but strong bond and I miss her immensely. She chose to die within 17 seconds of my leaving her for the adjoining room.
If every day you try your best - at whatever it may be, then gradually things fall into place - if you have tried, you cannot do any better than that.

Allow yourself the time to grieve at your own pace and in your own way. Only you can heal from your hurt.
Best wishes,

Martina

 

[CraigC]

Hi Angel

One of my main regrets is not being with her at the actual point of death.

That feeling still haunts me a little. I'd spent a lot of time with mum and popped home to get an overnight bag. She'd asked me to stay by her side but passed away while I was on the way back to spend the night with her. It has taken me a long time to come to terms with it to be honest, Time has made me realise that it is what happened before that was important ..... and not being there at the last moment hurts me more than it hurt mum.

As far as the patch goes Angel, please don't feel guitly at all. No one should feel in pain near death, not in this day and age. Mum did not want any pain relief, but in the last few days it was just unrealistic to continue without any pain relief. The people who deal with end of life care all the time know this too.

I've no regrets about the patches, mum had suffered quite enough.

Unfortunate as it is, time is the best healer - there is no quick fix for bereavement. It can take a long time. The good memories will come back I promise you and the regrets/guilt will fade away (they are an unfortunate part of the process in my experience and will fade away).

Kindest Regards
Craig

 

[Tender Face]

Angel, I am sorry I am late in replying. I confess I have read your post before and wanted to offer support but this is something I still find quite difficult.

Like your mum, I was ‘on notice’ things were approaching ‘end of life’ some two weeks before mum passed. In truth for a couple of months earlier I was told it could happen almost ‘any time’. Those last two weeks had me torn between keeping ‘vigil’ (which I wasn‘t even sure I could do emotionally never mind practically) - mum defying every prediction - me staying away (to get some necessary rest etc) - frightened to leave - frightened to go …. Trying to keep ‘normality’ at my own home (not that we’d had that for some time) …. I happened to be there.

For my own sake - part of me now wishes I wasn’t …. very selfish I know ……but watching my mum take her last breath I think will haunt me forever …… for others it brings peace ….. we are all different …. and who could say if I hadn’t been there, that too, would haunt me in a different way?

As far as end of life medication …. My mum had terminal cancer as well as her dementia and morphine patches had been administered for some time ….. In a previous ‘DNR’ consultation the GP had explained that at the point the pain became intolerable then pain relief (through driver) would be administered. Having had other family members die of cancer I knew it was the morphine which actually ‘induced’ their end …….it borders on that desperate ‘E’ word debate .. I know …. But could anyone see someone they love die in pain when their death is inevitable anyway and any associated pain can be avoided? And isn’t that why all the boundaries of pain relief medication fly out the window at such time - to give peace and comfort when there is no turning back and hope of cure ….. ?

I’m sorry, I know it is a very delicate subject …… I am eighteen months on from losing mum too, …. and sometimes it still feels as though it all just happened yesterday …..

Whatever regrets and guilt I may have about caring over the years - I could never have suggested that my mother was left in pain at any point in her journey and certainly not at the end.

I wish you peace.

Love, Karen, x

 

[Angel14]

Thank you

I will try to keep this brief. I just wanted to thank everyone who has contributed to this thread - I will never cease to be heartened by the 'kindness of strangers' and I can honestly say that all the comments I've received have helped me a lot.
It's not much fun being 'me' at the moment, because I have days where I wake up and can cope well with the days events, and other days where I wake with a feeling of a despair that do not lift all day. Then there are days where I think I'm coping, but become engulfed by a huge wave of grief and I'm right back where I started. I suppose I have to expect this is how it will be for me for some time, as I gradually work through this painful journey.
When I have the time (to do justice to your replies)I will try to respond to one or two of you who really "hit the nail on the head" but for now, Craig, Karen, Martina (to name a few), excuse me for not remembering everyone - thank you so much for taking the time to give me a little comfort and peace. And Craig, Good Luck to Stephanie (your partner) who is running the Marathon on Sunday for such a worthy cause - I'm sure you are very proud of her. God Bless you all. xx
p.s I chose Angel as my IDname as that's what my Mum always called me - 'My Angel' so maybe I didn't fail her afterall....

 

[kal d]

my dad

Hi to you all,
I lost my dad in march this year, he had vascular dementia for about 10years, i stayed with him through out the 'dying process' it was hard and upsetting but i did not want to leave because i knew if i did even for 5 minutes he would slip away. the process lasted 4 days and nights and for me was heartbreaking as i watched him starve to death he was not in pain as they were giving him morphine through a stent, he was lying on his back in the very comfortable bed but he hated lying on his back i wanted them to turn him on his side how he liked it but they would not as a result his head was back and his mouth was wide open i just wanted to fix him and make him comfortable but i was not allowed to. on the 4 night i drifted off to sleep though sheer exhaustion not for long though as the nurse came in and woke me and told it was 'time' i held his hand as he took his last breadth. i was very sad indeed but i was relieved as well as he was at peace at last and so was i. i loved my dad very very much and miss him terribly.

i have to do it all again as my mum has Alzheimer's

 

[Tender Face]

Hello kal … you describe that mix of exhaustion, sadness - and even relief so beautifully.

I am so sorry for what you went through and might yet again. Please do come to TP for support ….

I’ve always found I can say things here - even around death and dying - others just wouldn’t understand.

Much love, Karen, x