The dreaded call

[FifiMo]

Sunbell,

The nursing staff at my mother's care home had a different take on the talking and reaching out and grasping the air. Their view was not hallucinations but a transition from a deep coma like sleep and not knowing where she was and more importantly not knowing if anyone was there or not. Their approach was a sort of tactile one eg sitting on the bed, holding on to the grasping hands, directing them to where they made contact with something. In my mother's case it was either her doll or a big furry bunny that we had got her. No matter what names she called out, they responded quietly saying "Yes Im here, were not going anywhere. Interesting too that she never responded to words like ,'mum' or 'mother' if however my sisters asked where mummy was then there was an immediate reaction. Another thing she calmed down to was singing to her. In her case it was either Scottish songs or children's hymns that calmed her again.

Just thought I'd share with you the differing view and how they dealt with things.

I hope your mum at least got some peace after the injection,

Take care,

Fiona
xx

 

[Mamsgirl]

I insisted quite loudly that she be given something and Hallelujah they brought an injection to calm her down. Why this couldn't have been given when my brother tried to speak to them I don't know...

Why this had to wait until two family members were upset enough (by what sounds like your Mum's real distress), to insist on use of a drug order that was already in place is the question in my mind. Hopefully it was a case of getting started on the care package and your poor Mum won't be allowed to get to that stage again.

As Stephanie and Fiona point out, there are ways to ease distress that have nothing to do with drugs, and everything to do with being present and responsive and forward thinking. Ignoring end of life suffering and hoping the person will go to sleep is not an option.

Well done you for advocating so strongly and successfully! You are, in fact advocating for two people without a real voice at the moment, and I admire your kind hearted, no nonsense approach Sunbell.

Do try to get some rest and I hope your brother is OK,
Toni x

 

[Sunbell]

Thank you once again my friends for your concern and advice.

Fifimo, thank you for the comments, it just shows that all nursing homes have a different view as to dealing with this. Will certainly give it a go - your much earlier advice about doll therapy worked wonders with my mum, in fact over the last 12 months I don't know what we would have done without the dolly.

Thank you my friends from 'Down Under' for your support, I take all your suggestions and try my best to act on them.

Love Sunbell xx

 

[Mamsgirl]

Just checking in to say I'm thinking of you and your Mum x

 

[LYN T]

Hope you are looking after yourself Sunbell

Take care Lyn T

 

[Sunbell]

Thanks everyone, no change again today. Mum is sleeping nearly all the time and hardly any food at all, two half teaspoonsful so far today.

Doctor visited her this afternoon but said she looks very peaceful but if she becomes anxious in anyway the care plan is all in place for her now. Just no idea how long this will go on for her.

Love Sunbell xx

 

[LYN T]

Thank goodness your Mum is peaceful. I'm so glad that the care plan is ready to use and that will help if she gets restless or in pain. You really are devoted.

Take care and don't forget to look after yourself

Love from Lyn T

 

[Mamsgirl]

In some ways this is the hardest bit, when life is in a sort of suspension. So very glad your Mum is comfortable and has her lovely daughter's care at hand.

Sending you strength and hugs in abundance,
Toni x

 

[min88cat]

Hi Sunbell

Sending support from here as well, we are in exactly the same position as you, with mil unable to swallow any food or drink. Morphine in place for when she needs it..............it just seems so long and drawn out........

 

[tarababe]

Thinking of you Sunbell and hoping you find the strength to keep going.

Min88cat my thoughts are with you too as you also face this difficult time.

 

[Sunbell]

It is three weeks tomorrow since mum was taken seriously ill. I don't know how but she is still battling on.

I feel so much anguish and sorrow sitting everyday just watching mum sleep, then waken with a start and have a few gobble-de-gook phrases, take a couple of spoons mash or custard and a sip of juice and then back off to sleep to who knows where. All I can think is that it is just an existence, horrid and cruel, and all I can do is stroke her head and hold her hand. It is unbearable for me so what must it be like for my darling mum.

I am so tired and weary but cannot sleep for more than a couple of hours, something seems to waken me up and the dread of what is happening starts all over again. I sometimes think I am going mad, I cannot concentrate or enjoy doing anything, can't even get interested in the t.v, what on earth is going on!

Sorry for the rant but just need to let off a bit of my frustration and I know any of you who have, or are, going through the same emotions will know what it is like.

When my dad died it was a very sudden death, it was a great shock and took a lot of grieving to get over but at least he didn't suffer like mum is doing. O.k. she is not in pain but the deep sighs and ramblings tell it all.

Thanks friends if you have had the time to read my miserable post.

Sunbell xx

 

[Mamsgirl]

Ah Sunbell, you poor love, what a hideous marathon.

You know, they use sleep deprivation effectively at Guantanamo Bay to shake loose whatever suspected terrorists might be hiding. I'm deeply against Gitmo and it's techniques btw, but wanted to remind you of how much continued lack of sleep can scramble your thoughts.

After 48 hours without sleep I left my old Da and wept so unconsolably in another room Da's nurse had tears in her eyes as she tried to comfort me. Truth! Total nut case

Thanks to you Sunbell, this stage is clearly quite bearable for your Mum, and it's you who carries the burden of distress.

Some things I've found helpful at the end were wrapping hands in warm, wet face washers - cold hands don't seem to be a problem but the moist heat is welcome. Chap stick as Fiona mentioned, applied half an hour before mouth toilets, cool face washers to the forehead, and my BIL liked hourly hand massages with hand lotion.

You're doing a magnificent job Sunbell, so rant and rail at the universe for all you're worth!

Hugs x

 

[FifiMo]

Hiya Sunbell, hi to you too Mamsgirl,

These vigils while someone is waiting for God are very difficult all round. Bit like all momentous life events, they don't have a set of instructions with them. So, based on what is going on you have to do your own assessment. You say that your mum is eating a couple of spoonfuls of food here and there and having the odd sip of fluids. This will have an effect and might be prolonging things, NOT that I am suggesting you stop offering, far from it. Just be aware of it that's all. Ask the carers when they change her pad if it was dry or not. This gives indication of whether kidneys are still functioning. Check her eyes. Are they opaque? The cloudier they are the more of a build up of toxins in the body, as the major organs start to fail. Are there marked changes to her breathing? Just before death the breathing goes through an almost set process. All little things to watch for, assuming that there is not going to be a catastrophic failure of the heart, or say, a massive stroke, then things might be different.

One thing that you have to consider is your own welfare. As the timing of death is one of the great unknowns, you can only remain in a sense of vigil for so long before it starts affecting your own health. Even then there is no guarantee that you will be there with her when she dies. Many people talk about how they sat for days, got up to go to the bathroom and the person dies before the door is closed. So, you can only do your best. Ask the home if they have any empty rooms where you could go have a sleep but where someone can come and get you if the situation changes.

One thing to consider is, as I've said already, that death is a process. It is thought that the first stage is when the person starts withdrawing from loved ones, usually by sleeping or sitting with eyes closed. Almost like an emotional separation from loved ones so they can loosen the ties enough for them to complete their journey. Sometimes this is very difficult to achieve especially if they have had close relationships with these people over the years. Sometimes they need reassurance that the people being left behind will be ok. They may also need to be given permission to leave. Death can follow quickly after someone is told that the family will be fine and that everyone will help each other out and that it is ok for them to leave when they are ready. I know some people are sceptical about doing this. My two sisters were when my dad was dying. They did it though just in case it mattered to him, and within a couple of minutes he was gone. We can laugh about it now but it really was as if he thought 'thank gawd for that' and upped and left!

My thought are with you, your family, and your mum.

Take care,

Fiona

 

[lilysmybabypup]

Sunbell, I feel for you at this significant moment in your life. It brings tears to my eyes just reading all you're going through, it is bringing everything back from when I was with Dad in his last weeks. I don't mean in a bad way, it's ok, it's just still so strong, and rife with emotion.

What I found during that time with Dad was how intense and magnified everything was, and I spent all of that time with him alone. I really feel if someone else had been with me I would have felt better, especially since I had to make some very difficult choices on my own. If you have some support from somewhere I would call for it now because, as others have said, you need to take care of yourself as well.

I know what you mean about the short bursts of sleep, it's very hard to switch off completely when there's an air of expectation and we just don't know when things may change. Fiona is right about people sometimes needing to know it's ok for them to leave. The night before Dad passed, he was very restless and couldn't settle, I just wanted him to sleep and relax, and I told him it was ok for him to leave if he wanted, that I didn't want him to hold on if he needed to go. They were the absolute hardest words I've ever uttered, but I believe it was also the most loving thing I could do for him.

Please take care, come on here and rant, cry on someone's shoulder if you need to, and I just wish you all the peace in the world.

Stephanie, xxx

 

[Mamsgirl]

Just hijacking your thread for a sec Sunbell

Hi Stephanie, good to see your post, when I was in Sunbell's position they were always a balm. Having been through it, do you wish you could wrap Sunbell up in a protective hug or is that just me? Dinner's nearly ready and cab sav awaits. You sound OK???? Take care, Toni x

 

[lilysmybabypup]

Just hijacking your thread for a sec Sunbell

Hi Stephanie, good to see your post, when I was in Sunbell's position they were always a balm. Having been through it, do you wish you could wrap Sunbell up in a protective hug or is that just me? Dinner's nearly ready and cab sav awaits. You sound OK???? Take care, Toni x

Pardon me, Sunbell, hi Toni, what a generous thing to say, it's the ethos of TP. I'm ok, swings and roundabouts.

Yes, I really do feel the pain and exhaustion leaping from the screen when I read Sunbell's situation, and the may others going through the same experience. Sunbell, Toni is so right, I do wish I could just be there for you and the many others who find themselves ushering a loved one from this world. I do wish the hugs and comfort were more than virtual but they are no less sincere or warm.

Hope the day will be kind to you, your mum and your family.

Stephanie, xxx

 

[Sunbell]

Thanks very much Fiona, Stephanie and Toni, your caring words are so very much appreciated just now. You are all so kind and thoughtful

Just come home for a few hours after seeing mum, she was all over the place today, rambling, agitated, restless so nurse gave her some liquid medicine to relax her and she drifted off to slumberland again.

You all just being there to listen is so comforting, take care and hope you all have a relaxing Saturday evening (or Sunday if you are down under!)

Love Sunbell xx

 

[tarababe]

Oh Sunbell I know exactly what you are going through, bless you and your mum. It's the hardest thing to do, sit and watch. I didn't know what to expect as no end of life or palliative care nurse came to see me or mum, so there were things I witnessed that scared the heck out of me. My mum didn't last as long as your mum is, it was a matter of days once she went into what I think is called a waking coma, by which I mean she was unresponsive but her eye were open.... They did go cloudy as Fifimo said and also just looked different. Her breathing did change too all of these things quite common I think. It was and still scares me now, as I have no idea what my mum was or wasn't aware of which I think is what upsets you too.

I did the same, stroked her head etc and know how much it hurts being there all the time. I honestly don't know how you are managing after such a long time as it was hard enough for me being a few days. Obviously there were weeks in hospital of ups and downs prior to this but I'm referring to what I guess I mean by the very end part.

I'm not sure what to suggest but one interesting thing was what was said about letting them go. On mum's last day, both myself and husband were there, her breathing kept stopping as I was told would happen on here and I had all the same thoughts as you are. How is it for mum, is she suffering, is she in pain but can't tell us. Is she aware of whats happening but unable to move and can she hear me but is not able to let me know. Every so often her mouth would close quite tightly, not a grimace as such and her left arm would tense but it didn't seem to be in a reaction to anything. I ended up so inconsolable that my husband had to take me next door to another room where I said I can't cope any more to be able to actually watch her last moments. So, he spoke to the sister and then went back in to see mum. He told her he would take care of me and that we both loved her so much but we would be alright and she could stop fighting and go and be with her mum and dad who were waiting. We left the hospital and within an hour she had gone.

I really hope this doesn't upset you, but I know at the time I just wanted to know what would happen and why and I didn't.

I won't say take care of yourself as I know you will just try to keep going. You don't want her to go but at the same time you do as you can't bare watching her like this. that's what I thought. I couldn't sleep either but all I will say is, try to keep going and one day this part will be over for both of you and you won't dread the phone ringing or wake up with that feeling you have right now knowing what you have to witness again. The pain will be there but not quite the same kind.

I hope I have not said anything I shouldn't have and hope I have not upset you. Please stay strong and I am thinking of you.

Love Tracey x

 

[Sunbell]

Thank you Tracey, I am sad for you that your mum's last hours were so upsetting for you. I do hope that eventually you can let go of this and remember your dear mum as she was in happier times.

That is what I hope will happen in my case but only time will tell.

Thanks for your kind words, I really appreciate all you kind thoughtful people here on TP, what would we do without this support, even though we never meet it makes you feel comfortable speaking to people who are experiencing the similar things and understand.

Just getting ready to see mum again, I hope she is more relaxed tonight.

Thank you so much.

Love Sunbell xx

 

[LYN T]

Oh Sunbell

I too hope that your Mum is more peaceful tonight? The stress you are under is so great and you are being so brave.How you have managed to be with your Mum day after day when you are so tired is beyond me. You are a very special daughter who loves her Mum so much. Such special people.

Take care

Love from Lyn T