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Life-limiting illness

I think my dad's very close to dying but I just don't know.

29 replies

Alwaysthesame123 · 07/07/2014 16:14

My dear dad is 81 and has been unwell with COPD and various other illnesses (prostate cancer/shadow on his kidneys/heart dailure) for about the last 5/6 years. Over the last year it has become much worse and he has been bed bound since October 2013 (it takes him about an hour to get to the bathroom, brush his teeth/go to the loo and back to bed). My mum is his full time carer - and does the most amazing job, I am in awe of her.

Last Tuesday he woke up saying he felt so unwell - he was admitted into hospital and he was told he had an infection as his white blood cells were raised and he was given antibiotics. He came home last Friday and suddenly everything has changed. A hospital bed was delivered and he has had nurses coming in am and pm and 2 nurses from the hospice during the day. Yesterday we were told that he had been fast tracked and he will be getting visits 4x a day from the hospice nurses.

I can't bear to see him so ill, it makes me cry every time I see him which is usually every day. This must sound horrible and I don't mean to be, but does anyone know if he is close to death because i just don't know. The thought that he could be like this for weeks is too awful. He sleeps almost of the day, he can't get out of bed to the loo. He is drinking water and having small bits of food but today he said he just wanted to "go away".

I feel so desperate, I'm scared that I won't be near him when he dies in case I can't get there in time. Every day I wonder if it will be today and I find myself wishing for it all to be over.

I'd be so grateful for any advice if anyone can give me any. Thank you.

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Mintyy · 07/07/2014 16:16

Ask the hospice nurses, they will be more than happy to tell you honestly. I am so sorry you are losing your dad but it does sound as though he has wonderful care. Thinking of you, op Flowers.

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MarianneSolong · 07/07/2014 16:21

It sounds as though he is very ill. I am glad your mother is getting support.

There is some good literature from the Marie Curie Foundation, which I found helpful at the end of my father's life.

www.mariecurie.org.uk/en-GB/patients-carers/for-carers/end-of-life/

My ideas of death used to be based on Hollywood films. I had imagined a significant conversation or something dramatic happening. Instead there was a steady, peaceful shutting down and stopping.

The hospice which is supporting your father, may also be able to offer some help and support to immediate family members.

I think all you can do is look after yourself. If it's possible for you to take time off work, away from any children you may have in order to visit, that might help too.

All the best

Marianne

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Lilybensmum1 · 07/07/2014 16:24

I'm so sorry for you always just dreadful to go through this. I hole this helps I'm an RN I hope it does not sound to clinical or impersonal.

It tough without knowing all the facts but, the fact you dad has been fast tracked would suggest he does not have long but it could well still be weeks, you say he is eating small amounts but, in my nursing experience when someone says they want to go away the end is usually close, how close is hard to say without seeing your darling dad.

I'm so sorry for you it's such an awful thing to watch a parent like this, does he have registered nurses caring for him? If so they should be able to give you an idea of time frames although of course it's never exact.

It's lovely that your dad is at home but without a health professional there it's impossible to know whether you will get to be with him when he dies.

The hospice nurses are usually fab and should be able to allay all your fears and answer your questions.

Sounds like you are doing the best you can in an unimaginable situation.

Stay strong I hope you get the answers you need.

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Alwaysthesame123 · 07/07/2014 16:35

Thank you so much for the replies, I'm very grateful. I think I need to speak to the hospice nurses. I want to but I'm finding it hard to ask....I don't want to appear uncaring if that makes sense...asking when he might die...and I think that maybe I'm trying to fool myself and I know their answer will be that he is dying.

I keep wanting to believe that this is a setback and that he will get a bit stronger. And then I wish it was all over for him. He's such a dignified man, always so kind and generous to everyone, especially his family and to see him in this state is so sad. Thank you again for taking the time to reply, it really helps. I've never been in this position before and I'm worried that things are going to get worse for him - I just want it to all be over. I feel very selfish saying that but deep down that's how I feel. X

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Mintyy · 07/07/2014 16:38

Op, you sound lovely (as does your ddad) and you are NOT being in the least bit selfish, I promise you.

The hospice nurses are totally used to dealing with the soon to be bereaved and recently bereaved. I am sure there is nothing you could say or ask that would phase them. They will be happy to answer any questions.

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FlossieTreadlight · 07/07/2014 16:38

Please don't think the hospice nurses will think you uncaring - their role is to look after your dad and his family and if they would be only too happy to talk it through with you. They can also help you access counselling support if you would like it. Big hugs.

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MarianneSolong · 07/07/2014 16:47

I think something very odd happens to time at the end of life. Most of what we do is timetabled and planned. Even birth is regulated to the extent that women will be induced if you don't eventually go into labour.

I never got a definite answer with my father. I think some people linger on the threshold. But things like refusing food, falling silent, withdrawing from the world are steps along the way.

So on the one hand, those who are alive and well have to carry on to an extent, organising themselves, going on with some of the daily routines. But it's also a time outside time.

It can also be a period when immediate family can be together and support each other through the waiting.

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catquestioner · 07/07/2014 17:05

Op...I have no experience so can not offer advice but I just wanted you to know how incredibly brave and caring you sound. I hope your Dad faces a peaceful end and you and you mum can take some comfort in that. Thinking of you all x

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AcrossthePond55 · 07/07/2014 18:10

I'm so sorry, this must be an incredibly hard time for you. We had the same with my own DF. He came home from hospital in mid-July and lingered until late Sept. The hospice nurses were incredibly supportive. They understand the need to make plans and to settle things in your mind and your heart. They understand the need to know what's going on. They sat with us frequently and explained what was going on with Dad physically and what we could expect, every step of the way. They took care to see that Dad was as comfortable and pain free as possible. As the time got closer, they prepared us as best as they could for the physical aspects of his death and let me know when it was time to take off work and be there 24/7. Dad's death when it came was so very peaceful and the nurses were as close to angels as I've ever seen.

As far as I'm concerned there is a special place in Heaven for those who guide us during this time. Talk to them and let them help you. It's part of their mission.

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morethanpotatoprints · 07/07/2014 18:15

OP, I am so sorry you are going through this as I have been where you are.
Please speak to the nurses and ask about his ongoing care, what they expect to happen and when.
They were happy to discuss everything with us and when the end did come we were prepared.

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Elibean · 08/07/2014 17:34

I'm so sorry, OP. I've just been through a similar scenario with my lovely uncle, and once the nurses started coming in four times per day (they were known as the 'Twilight Team' Hmm) it was a matter of days. But even they said no one could predict, and individuals vary so much...

Its a very strange, hard time. 'Twilight' does fit, I suppose. Your father sounds like a lovely human being, and I hope he has as much peace and as little suffering as possible.

Hugs to you, xxx

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Alwaysthesame123 · 09/07/2014 11:35

Thank you for all your kind words....so much appreciated. I spent yesterday with my Dad, he's very weak and is hardly eating, but just keeps hanging on...he even had a little joke with me. The GP is arranging for some medication, I think the hospice nurses called it SOS medication, to keep at home so that if he needs to have medicine by injection than it will be at hand for him. I'm not entirely sure what it is but I hope it will help him if he gets to that stage.

I feel that it is going to be a very slow and long process, he won't let go. I haven't yet found the right time to talk to the nurses but I will in the next few days. I just keep thinking that maybe he might just be able to get through all of this.

Thank you to all of you.X

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ajandjjmum · 09/07/2014 11:43

My heart goes out to you - I remember the sadness when it was my own Dad - not wanting him to go, but not wanting him to suffer.

We still have some special memories from those sad days though. We laugh at the way he said when he knew he only had a matter of day, 'at least I never lost my marbles!', and shed a few tears when we remember him singing to Mum the song that was 'their song' when they were young.

And you have the opportunity to say and show how much he is loved.

Wishing you strength and your DF a peaceful passing.

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AcrossthePond55 · 09/07/2014 14:52

There may come a time when you have to give him 'permission' to go. I think you'll recognize if/when that time comes. We did. If he's talking & joking I'm sure that time is not now.

Talk to him. Relive wonderful times. Tell him how much you love him. Ask him about himself and the stories of his past (if he is able to talk that much). Even if you've heard them 1000 times. These moments, hard as they are, are precious and special in a way you will only realize after it's all over.

I wish you peace and your father comfort and ease.

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honeybeeridiculous · 11/07/2014 21:11

No advice I'm afraid but Thanks for you and (((hugs))) you sound lovely.
I hope your dad is peaceful

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Alwaysthesame123 · 12/07/2014 12:11

Thank you for all the kind replies and words of help to me. It has been a very long few days....my dad has a syringe driver in and he is so peaceful, sleeping. From time to time he's opened his eyes...we have all told him how much he is loved...the last real words he spoke to me were yesterday morning. He said I was his good girl and that he loved me. I won't ever forget that...I can't believe we are where we are, I think the end is very close now. We are talking to him, telling him we love him and holding his hands. The hospice nurses are truly wonderful, we feel so blessed to have their support. They know exactly what to do, they are kind and gentle, all they want is for my dear dad to be comfortable and in no pain. It is as if he is their dad too, I can't put into words their kindness.

And to everyone who has taken the time to write, I am so grateful. I am grateful for you sharing and giving me such good advice...I spoke to the hospice nurses the other evening. They gave me so much of their time and explained how his body would start to "shut down"..their words put our minds at rest and we know that he is comfortable, in his home and surrounded by so much love.

Thankyou everyone...I really do love my dear dad so much, I don't want him to go...but I know he will...and he will be loved all the way.

Xx

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Floundering · 12/07/2014 12:16

Oh Always, don't know what to say but thoughts & gentle hugs for you & your darling dad. I'm sure the lovely nurses have told you but keep talking to him, and holding his hand, even as they drift off they can still hear, last sense to switch off.

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charlie0123 · 12/07/2014 12:23

Sending love and strength

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headlesslambrini · 12/07/2014 12:26

Thinking of you.

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AcrossthePond55 · 12/07/2014 14:31

"You are my good girl and I love you". Always that is really such a wonderful memory to have. What more could any daughter want to hear from her dad?

I wish your whole family love and peace. I wish your dear father a calm and peaceful passing. I believe you will all see each other again.

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Rosa · 12/07/2014 14:34

Sounds very hard but what wonderful support....wishing you and your family strength

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SecretWitch · 12/07/2014 14:39

I just wanted to let you know I am thinking about you and your family today. What a gift to love and be loved in the manner you describe. Blessings for peace in the coming days. Xx

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Elibean · 13/07/2014 17:58

Sending hugs your way, Always. Such a painful time, but it does sound as good as it could possibly ever be. xx

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Lilybensmum1 · 15/07/2014 15:38

Thinking about you Always, hope you are ok.

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felttippens · 18/07/2014 14:55

Always, I am on the same journey - my dad's morphine driver went in today after no longer being able to swallow his oral medicines - he is very peaceful with just the odd wakenings x I hope your family and dad are all peaceful too x

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