How to cope with the time left?

[EvieSparkles0x]

Sorry if this sounds blunt or selfish, but I haven't really processed this yet.

Just wondering if anyone can offer advice or support about how to cope with the waiting and wondering if someone close to them is very likely to die soon?

My dad has COPD and has lived with the condition for some time. Last night he was admitted to hospital and he has told us that unless they can clear his lungs, which is unlikely at his stage/age, then all they can do is make him comfortable :(

While my dad is what would be considered a "reasonable" age to move on, I do not feel ready to lose him (I'm 23). Not saying that makes it easier or harder but I've never experienced the death of someone close to me before, so I feel so lost and unable to, well feel anything. I can cry if I talk about it but I feel numb inside. Sorry, I'm rambling.


My question I guess is, does anyone have any advice about how to deal with the coming days, both practically ad emotionally? I have to tell work on Monday that I may have to rush off at a moment's notice if I get the phone call. I have never been to a funeral before and I am terrified. I have a young DD to look after and we are supposed to be TTC. I am intensley worried about how my mum will cope. I guess I'm also really posting because I'm not ready to tell/talk to anyone about this and I thought I might find some comfort in shared support. Thank you for reading

[EsmesBees]

You poor thing. The waiting is terrible. But you will get through it. Practical tips are to be as kind to yourself as you can. Draft in help with DD, tell work you need some time off, make sure you eat and rest.

Emotionally, I think it's so personal I can't really offer advice. I wanted to spend as much time with my mum as possible, so sat with her the three days it took her to die. The hospital staff were great. They were honest about what was going to happen and what to expect. I asked lots of questions so I felt vaguely in control. Don't worry about the funeral. Cross that bridge when you come to it.

[TrampyCat]

Hi I lost my dad last year he had very severe copd. My only advice would be to spend as much time with him as you can xxx

[EvieSparkles0x]

Thank you for responding, it means a lot

I went to see him today, I felt like I physically couldn't do it and I was so worried about him being upset but I managed to hold it together. He told me and my mum he wanted to come home and asked if she could cope. I'm so, so terribly sad for them, I know I can't say for sure because I haven't been in that situation but it almost feels like it would be easier if he was incoherent or something. It's just too much to even think about right now, I will visit him as much as I can but we don't know what's going on fully yet, I still have some small hope he will recover but I don't think it's realistic :(

[EsmesBees]

That hope stayed with me til the end. I hope he is comfortable and you can all support each other. I read some good advice on here once: when you are going through Hell, keep on going.

[alazuli]

Evie - I had the same hope too even when it was crystal clear to everyone else it was the end for my mum. Hope is what makes us human I think.

The waiting is such an odd feeling; you try to brace yourself but no matter how much you prepare yourself it will always comes as a shock.

Practically, I would say goodbye properly before it actually happens because when the time comes you may find yourself too shocked (like I was) to say anything or it happens so quickly it's over before you realise (which happened with my mum).

Also, I made sure I recorded my mum's voice saying I love you as people say you often forget a person's voice after a while.

xxx

[daisydalrymple]

Think of all the things you've loved about your dad throughout your life, tell him all of them, share your memories, tell him all the things you will remember about him.

Ask him if there are things he would like to be remembered by, anything he would like to say.

Tell him how you will talk about him to your children and how he would like to be remembered to them. Ask him if he'd like to write them a card if he's able for when they're old enough to read and understand grandad loved them.

If you're able (or if not, perhaps ask an aunt or uncle?) what his wishes might be for a funeral?

Be there to support your mum, and she will be there for you too. Even in our darkest moments we can still find strength to help others. There will be times you will feel stronger and times you just need to crumble, and both are ok.

Cherish the times you have left with your dad, when the time comes to say goodbye you will get through it day by day, so for now just cherish each moment.

(And practically, accept there are times the laundry / shopping / cooking / sleeping etc needs to be done and don't waste a minute feeling guilty about having to get on with everyday stuff).

Thinking of you all

[TrampyCat]

I couldn't say by to my dad we still had hope right til the end, I think my dad needed that bit of hope to keep him going. Obviously everyone will deal with things differently there's no right or wrong way. I'll keep my fingers crossed for your father. Xx

[EvieSparkles0x]

Thank you so much for all your lovely, kind advice. I'm still not really processing it but I will take all of your advice on board, ready for when I need it. I'm so glad I posted this, you really have helped me a lot. I was dozing off and had a half dream he was standing in the doorway perfectly fine, coming to tell us he's off to bed (which is what he does when I'm at my mums). I will hold out hope for him until the end, and let him know how loved he is.

x

[SloanyAnne]

My dad died when I was young too. He was fully aware right up until he died and that was harder than when my mum died quite suddenly but had been highly sedated for 2 weeks so not 'conscious'. It's very hard. One thing that helped was to focus on one day at a time and make that day a good day. It he

[SloanyAnne]

Sorry
It helped not to look into the future. Just focus on that day.
One other thing. If your dad is able to, get him to tell you stuff about his life and yours. The history of you as people is easily lost.
for you. Take care x

[lulu1959]

Hi Evie. I am going through exactly the same as you. I've just spent the night nursing my dad in hospital so my mom can have some sleep. All I would say is be kind to yourself. Take all of the help you are offered and spend as much time with your dad as possible. It's a hugely distressing time and I do feel for you but it's better to have a goodbye rather than not, we are talking to him, remembering good times with photos and yesterday we had an hour looking at. Morcambe and wise on YouTube and he was laughing. One of his favourites. You will actually find some times of joy and kindness. There's a lovely supportive thread on here by a Lady called mummy Lin. I've just joined and it a lovely community so you may want to have a look at it, best wishes and hugs.

[Unmanned]

Hi Evie my mum also has COPD but is at home after many many hospital stays over the last few years. She is on oxygen 24/7 and still deteriorating.

I will say however that she's been at the point of "no more to be done" very many times over the last three years even the nurse said the other day she's amazed she's still with us.

What I suppose I mean to say is this may not be his time - but if it is then just be with him. My dad died when I was 22 and pregnant and I couldn't deal with it and wish I'd spent more time with him. 30 years later I have the opportunity to ease my mums journey.

Be kind to yourself - there is never a good time to lose a parent xx

[Imissmyboy]

So sorry you are having to go through this.
Tell him as often as you can that you love him. Hold his hand. Remind him of all the good times you had together, the times he made you laugh until you cried, the times when he held you when you were upset as a child.
Never forget that he will always be part of you. He will always be in your heart. xx

[EvieSparkles0x]

Sorry it took me a while to reply but just wanted to thank you all again, it's very kind of you.

It's been such a hectic weekend but we've all rallied together to make sure he's not lonely. Unmanned I think if we're very lucky (doesn't seem like quite the right word!) we may actually be in that situation too, it may not be the end.

It's been such a rollercoaster because he seemed to be managing as normal, went to hospital on Friday evening and 2 hours later they had called my mum saying we needed to come and say our goodbyes. Now today they are saying if his CO2 levels drop or don't increase over the next 2 weeks they can send him over to Oxford to get a similar machine and he can come home! Unfortunately he does also have an infection :( but I am hoping for the best now.

Unmanned I think you're also right about making this as easy as we can for him regardless. Do you mind me asking if your mum is at home or in hospital? I know he'd like to come home if he's not bed ridden or anything but if he is he would prefer to stay in hospital. I know he'd want to be at home if possible though.

[NurseRosie]

Oh bless you. I lost my Dad at 24, I was such a daddy's girl and struggled. My advice is just to make the most of this time. Be together as much as you can and try not to feel guilty about not being there, you have your dd and your dad knows that. If your dad is a practical kind if person, as hard as it may seem, it may be worth asking if hes had any thoughts about arrangements. My mums friend planned everything and found comfort in knowing itd be all her way, but it isnt approproate for everyone so up to you. From a nursing pov, copd is an aweful condition. All areas work differently but thrres no reason he cant be home if he wants. Just make sure the hospital refer to the district nurses/community matrons for support. There is also Marie Curie if in your area and carers through social services if appropriate. Woukd he also consider some time in the local hospice, they arent as bad as people think and are a real support, even if he is well enough to go as a day visitor, if on offer. My heart goes out to you op, i know this is such a difficult time. Please reach out to your friends for support. It is important to look after yourself as well as your mum and dad x

[plinkyplonkyploo]

Thinking of you Evie. My sister died of cancer a year ago on Wednesday. In the last days I also struggled with keeping it together while visiting her. What I found helpful was to give her foot massages. It made her feel better, gave me something practical to do and was a way to communicate with her and make her feel loved without too much talking on her part which she struggled with by that point. Look after yourself.

[Unmanned]

Morning Evie mum is at home as there is nothing more that hospital can do that can't be done at home.

She's on oxygen 24/7, nebuliser 4 times a day and recently added oramorph to the cocktail of tablets! We have carers 3 times a day too.

She's only able to mobilise to her commode which is next to her recliner chair but even that is taking it out of her now.

Roller coaster is a phrase I use all to often to describe COPD it's scary how fast they can decline but then rally.

PM me if you want to talk in more detail - it's a bitch of a disease

[LuckyBitches]

I'm sorry you're going through this OP - the waiting was the worst part for me when my brother died, although there was only three day's notice in his case. My tips are:

1. Cry as much as you want to. Don't hold it in. Find a public toilet if you necessary. Tears are sort of in-built healing mechanism, IMO.
   
2. Ask someone (DH/DP?) to tell everyone that you want to know, that way you won't have to go through breaking the news multiple times. People can gather themselves in preparation to support you.
   
3. Be kind to yourself - grief is very wierd. I thought I was going mad.
   
4. Keep posting - we're here if you need to offload.
   

[LazySusan11]

Hi Evie,

I can relate, we are with mum who is still hanging in there just, she keeps fading and then picking up. This entire process is incredibly painful. I've come to realise some things about me whilst being with mum, I cannot be with her when her time comes the thought of watching her take her last breath cripples me in ways I never knew possible.

I can't talk to her about memories and all the other things lovely people in my situation have suggested it makes it all far too real and she doesn't want those sorts of conversations. The waiting has me terrified I'm so frightened that she will suffer I cannot bare seeing my wonderful mum so vulnerable and I can't help her.

What I also feel though is that mum will decide when she's 'ready' and although I might not be it's her choice. She knows how much I and we as a family love her. I know she loves me, I have spent my days massaging her hands and feet, brushing her hair and telling her everyday nonsense.

I will never be prepared for mums passing the only thing I keep thinking is this is an inevitable part of life and although I may not cope in the beginning and grief is a very personal thing millions have stood where I am standing and I will someday remember mum as the beautiful shining light that lit my way throughout her life with me.

I am sending you love and gentle hugs

[NurseRosie]

I dont think you can ever be prepared tobloose someone you love, its the hardest thing in the world. You will never get over it but life will carry on around your grief and eventually make it a little bit smaller. As i posted i lost my dad but i also lost my best friend a year and a half ago due to mental health issues and essentially suicide. I think about them everyday and yes memories will give you comfort. You will get to a point where youncan think back and not burst into tears. Being practical and keeping busy helps. Please find comfort that you are giving comfort, just by being there with your loved ones x

[NurseRosie]

I dont think you can ever be prepared tobloose someone you love, its the hardest thing in the world. You will never get over it but life will carry on around your grief and eventually make it a little bit smaller. As i posted i lost my dad but i also lost my best friend a year and a half ago due to mental health issues and essentially suicide. I think about them everyday and yes memories will give you comfort. You will get to a point where youncan think back and not burst into tears. Being practical and keeping busy helps. Please find comfort that you are giving comfort, just by being there with your loved ones x

[AstrantiaMajor]

I was 23 with a baby and a toddler when I lost my Dad. The only thing that has kept me going for the past 40 years since, is the knowledge of how much he loved me. I have tried to live my life in the way he would have wanted. I know he hated to ever see me cry so I have tried to be strong and make him proud. I hate the fact that my children never got to know him, and my DH have tried to be exactly the kind of Grandparent he would have been.

This waiting time is so hard, I think you have to do your crying now let those around you see how much you are hurting and let them help you. I am not going to tell you it gets easier. It does not. What I hope will happen is that you will learn to endure the pain and use his love to shape a happy life for yourself.

[lucyandpoppy123]

Hi Evie, so sorry to hear this. I am in a very similar situation, and also 23 with a young DD. My dad was admitted on Thursday from a heart attack and it is likely we will be saying goodbye today. It's a lot to process. Really sorry your going through this as well. Feel free to PM me

[Unmanned]

Hi evie how's things?