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How do you cope with all the uncertainty and sense of impending doom?

(18 Posts)
sweetheart Tue 22-Nov-16 12:41:45

My dad has just been diagnosed with heart failure and i am finding the reality that the life I have known for the last 35 years is about to totally change forever and there is nothing I can do to stop it. Admittedly I am a bit of a control freak at the best of times so the sense of uncertainty is making me very uneasy.

I am struggling with not knowing how long we have with him, and how the end is likely to come. My parents have decided they do not want much specific information which I have to respect.

BeautyGoesToBenidorm Tue 22-Nov-16 12:48:59

I know this feeling SO well. My dad also has heart failure, and Huntington's disease to boot. HD will definitely kill him, and he's gradually losing parts of himself every day. It's heartbreaking.

I also struggle with things being out of my control. We have absolutely no influence over what happens with our parents' health, and the stark reality of losing them is deeply frightening. I'm nowhere near ready to say goodbye, yet I feel like I'm doing it every day. I do feel for you, it's so scary flowers

sweetheart Tue 22-Nov-16 13:21:05

Sorry to hear that BGTB, from what I have read I'm guessing my dad is in stage 3. I have no idea what that means in terms of his expected life span.
I'm most worried about watching him die a slow and painful death, we have no information about how his condition may deteriorate or how quickly.

HollowTalk Tue 22-Nov-16 13:32:01

My dad died of heart failure this year, OP. He had cancer, too, but that wasn't the cause of death and gave him no symptoms.

Over the last year he lost a lot of energy. Walking from room to room would take a while. One thing helped was iron tablets and water tablets - they gave him several months of extra life. His finger nails were purple before he took the iron tablets and back to normal after. His ankles were swollen before the water tablets, much less so afterwards.

In his final days he ate very little. He would sleep in the afternoon and in the evening just watched the clock, wanting to go back to bed.

He wasn't in pain. He was just very, very tired and when he died, none of us could have wished him to live longer as he was really ready to go.

flowers for you and your family. It's a really difficult time.

sweetheart Tue 22-Nov-16 13:36:13

Thanks Hollow, I'm so sorry for your loss.

He is already on water tablets for the swelling - they have just doubled his dose this week and are reviewing next week to see if they need to double them again.

He has sleep apnea so already dozes quite a bit with that anyway. He is short of breath when moving around and already pretty slow on his feet.

Since he was told he has not wanted to leave the house as he's worried what will happen to him out and about - as well as the fact that because of the water tablets he constantly needs a toilet very close by.

I think my mum is struggling because she feels she can't leave the house either.

sweetheart Tue 22-Nov-16 13:39:10

Hollow could I ask how long your dad lasted? I've been wondering if I should be changing Christmas plans to be with him

HollowTalk Tue 22-Nov-16 14:11:33

I'll PM you if that's OK?

sweetheart Tue 22-Nov-16 14:18:54

of course, thank you

Yoarchie Tue 22-Nov-16 14:21:03

I'm sorry op.

sweetheart Tue 22-Nov-16 14:50:25

Thank you yoarchie

I am very sorry OP for your father, I genuinely hopes he has as best a time as he can with his condition.

Well to be truthful, I came here to the forum to see if anyone had any advice for myself. I am facing impending doom. This is with regards to myself, I don't wish to hijack your thread but will try my best to say how I have been coping, which is the best advice I can offer.

I am awaiting a diagnosis, it is one of the big neuorlogical disorders at best or possibly multiple myeloma which is a cancer of the blood at worst. Only the close family know. I have suffered with ill-health my whole life, some really major and life-threatening stuff, been rescucitated three times in my lifetime. What I can tell you is sometimes it is not as bad as you fear, yes I know that sounds mad reading my last sentence, but seriously it could have been really bad, the last time six years ago baffles even my doctors that this is just me now showing some reverb from that.

I always tell people who ask about the older stuff the saying "knowlege is power" is very important. I don't mean googling and worrying about allsorts, but rather finding out as much as you can about what you can expect from the disease, limitations, ways to help yourself, everything is important. It can change your life. It will help you if things go bad sometimes, you won't feel so frightened, you will act calmly and rationally at times because you have an idea what might be wrong and can do your best in that situation to the best of your own capabilities.

I have had my days recently, to my mum or husband and they both have the exact same mantra "Stay Positive". Of course I have wanted to rage and be all crazy and upset, particularly at this time of year with young kids, but you come to see it is you they are looking out for most, not just protecting themselves. It stresses you out less, that they are cool-headed, they keep you level and I think that is the best you can do for your dad. I know it will be very, very tough, but just think on it as right! My time now, this man did a fantastic job preparing me for the world and he is going to benefit from that experience now he really needs me most!

Try to keep a wrap on any emotions the best you can for him, if you need a hug or a cry, go to someone you trust and let it out or come on mumsnet or wherever to vent. Also worth looking into any forums that deal with your dad's condition, I cannot stress enough how much they can help, I have spoken and gotten terrific advice from folks on those. People that want to help. Best of luck. Not been on mumsnet a while but if I am here happy to listen if you want to vent too, sorry for the long message xxxx

minmooch Wed 23-Nov-16 06:58:37

My nearly 16 year old son was given a terrible life limiting diagnosis - an aggressive braintumour. He lived 27 months after that. Much of that time he was very very ill. But the times he was able to we got out and tried to live normally. He wanted normality so that is what we tried to give him (despite physical problems - double vision, now needing to use a wheelchair, tremors and sickness).

It was about giving him the best life and death that we could.

I panicked sometimes when we were out - what would happen if he had an accident and died? Well I would have preferred that he dieddoing something he loved rather than the reality of dying in a hospice (which is what happened).

From the depths of despair we found humour - in everything. I don't know where we all found the strength but we surrounded him with love and laughter to the end. And he kept us laughing ( and crying) to the end.

For me I lived on no sleep, chocolate and wine for those 27 months. I was his career and did not leave him ever.

It is beyond horrific but at the same time an extreme priveldge to help someone you love dearly to have the best life/death they can.

You will find the strength and you will get on anddo it because quite frankly neither he nor you have any other choice.

minmooch that was a beautiful post, brought tears to my eyes. I am sorry for the loss of your son but it sounds like he was so lucky to have a wonderful mum like you. Jeez, totally going now writing that. flowers

sweetheart Wed 23-Nov-16 09:31:10

Like Big Bots and Mini - Thank you so much for your comments and I'm so sorry you both have such sadness in your lives.

At the moment (especially with Christmas etc approaching) it is like a giant elephant in the room. It's been said once "your father is dieing" and now must not be repeated and is sort of hanging in the air as some sort of black cloud.

I am lucky to have 2 sisters for support and my wonderful dh who is giving me lots of much needed cuddles.

I am finding out as much as I can on my own mini as you suggest and my wonderful friend who is a district nurse has assured me that a painful death would be very unlikely which was my biggest worry.

I guess life is always uncertain - i have just never noticed before. It will take some getting used to.

sweetheart I am so glad you have a friend who is so qualified, they will be a great help for you if you have any questions. Same with your sisters, my sister and me are close too and she has been amazing too for me, a real trooper.

I completely empathise with what you said about Xmas time. I know to others it might seem like the least of our worries but I get where you are coming from. With me it being possibly motor neurone or the myeloma, I am thinking things like "is this the last Xmas with my kids, at least opening presents with them (am needing help wrapping now and no fancy stuff which I am kind of renowned to those I give gifts too). I think because Xmas is such a time for family and giving and joy, it is very present on your mind. This was what I was going to come here for to think AIBU? To hear you say how difficult it is for you makes me feel less alone if that makes sense?

It sounds like you have a good head on your shoulders and are doing everything you can, enjoy your Xmas with your family and treasure all the memories regardless. I wish you the very best xx

HammersWidow Wed 23-Nov-16 09:53:03

flowers to everyone who has suffered, is suffering or has yet to suffer

sweetheart Wed 23-Nov-16 10:02:08

BigBots, your strength is so inspiring. I can't imagine being in you position but don't want to offer you pity. Instead I will offer you positive thoughts and wishes for the best outcome for you and your family as well as plenty of big bear squeezy hugs (because apparently I'm quite good at them!)

Don't feel unreasonable about Christmas - it does make things worse somehow, I think because it's supposed to be a joyful and magical time of year and unfortunately we are both faced with realities that are certainly not joyful. It is harder to raise a smile to people around you who think you should be in the festive spirit. I feel like I don't want to be doing things in case this is dad's last xmas - like taking photos and the pressure to make this the best Christmas ever! Well it's not going to be is it - it's going to be pretty shit, lets face it!

I'm glad you too have sisterly support too, something for us both to be thankful for.
xXx

Definitely and everything you said there was like well weird because I have thought it myself about this Xmas. Why is there no Xmas tree emoji? Oh well.....star

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