Feeling Like I'm 'Waiting' for DF to Pass Away 😪

[Chichz]

Hi all,

I haven't posted on this topic before. I have a DF in his late 80s who was in brilliant health until a few years ago but is now almost certainly in his final year.

He has vascular dementia, heart failure (obviously) and suspected lung cancer. Some days you really wouldn't know, but the general pattern is one of decline. My DM is his carer and is lucky - if that's the word - to be well-versed in what help is available and is able to use their savings etc to access support. She's doing a great job but is needing more time away from him.

I just feel a sense of 'waiting' at the moment and it's very strange. I have had intrusive thoughts about it being better if Dad wasn't here - I suffered very badly post-natally but this has actually equipped me quite well to rationalise them. I'm not necessarily asking for advice but just wanted to share my situation/feelings with people that might recognise them. There's a part of me that wonders if he will massively outlive the doctors' prognoses - but will that actually be good for either of them?

I've spoken to a close friend who totally gets this, but other than that, I find myself in a real limbo. When is that call going to come? Am I already grieving? How will I explain it to my young son?

Thanks if you've got to the end of this. 😘

Im in the same situation. Since Xmas we've lurched from one crisis to another. Every time the phone goes I wonder if this is it.
It's very weird just waiting. Horrible tbh. You have my sympathy.

Thanks for your reply @GustavaKlimt.

It really is weird isn't it, and I'm sorry that you're in the same situation.

I'm torn between dreading it happening but also dreading it dragging on. 🥲 It sounds awful writing it down like that.

No advice but a handhold. DH felt like this - FIL was in hospital - Drs said he wouldn't last the night. He lasted 4 days & DH said that he felt like he was waiting for his Dad to die. It was awful. He loved his Dad so much and 4 years on still wishes he was here every day. I think...it's not waiting for death so much as waiting for the suffering to be over. Hugs xx

P.S. we told DC (then age 4) that Papa had died and what it meant. They don't understand euphemisms at that age. Initially DH said that Papa had "passed away" & she asked when he was coming back, so I would suggest be factual as you can with an appropriate level of detail i.e. not too much depending on age.

Yes. My beloved DF has dementia and is in a nursing home. He mostly knows who we are but is miserable and just wants to go home, firmly believing he would be safe and not wreak havoc. It was killing us trying to care for him and might have killed him too as he enjoyed playing with the electrics towards the end of his time there. So life is in limbo while we dedicate ourselves to visiting as it's his only comfort. I often wish he'd die as this is no life and he would have hated to see the impact on us. And then I think I'd never hear his dear voice again or hug his shoulders or hear his (increasingly rare) laugh and that would be unbreakable.

Thank you everyone for making me feel less alone. 😘

@Wheech I feel exactly the same about hugging his shoulders. They're so thin too.

@thejadefish Yes, we will definitely be factual. DS is nearly 6 and almost certainly has ASD (think high functioning) - there will be LOTS of questions! He does know someone who passed away suddenly and understands the concept of not seeing them again. This has been quite comforting. My DF and he have such a lovely bond at the moment, though. It's endearing and heart-breaking at the same time. I'm glad your daughter took it well, at least by the sounds of it!

In the case of elderly parents with dementia, it is entirely common for the actual death to be a blessed relief. This is because you grieve for the real them no longer existing at a much earlier stage in the long process of decline.
It may be easier on everyone to admit your DF to a decent nursing home and then you and your DM can visit as often as you want but not have the burden of any hands on care.

@Itwillbefinehonestly Yeah, I do understand that's more normal with dementia. Perhaps with it being vascular and therefore more sudden, we've really wanted to avoid that - and DM does feel him being at home is for the best for now. Having said that, he's going into a home in a couple of months for 2 weeks for some respite and we do all wonder if that will change one or both of their minds!

I have to admit that the hands-on stuff is a little out of my remit as we aren't geographically close enough to visit other than weekends. They have set up a good routine with care visits etc though. He lights up when me or my son are there - at least for a short time!!

I spent 4 years waiting, and finally go to the point of unless her heart failed, mum was going to be here forever

She battled and won every medical fight

The end was quick. One minute she was away down the town, having driven herself, 3 weeks later we buried her

Mum lived with us the past 20 years. She had her own sitting room. bathroom. bedroom, spare bedroom within our home

I called her living room as Gods waiting room

Since Covid, she kind of gave up socialising and whilst she was still fit to go out, the shielding I think scared her

So tbh we ( me and DH ) were waiting for her end, and I think she was. Her peers were all dead, she had buried children, he beloved husband had passed , she had just given up and was waiting for her body to catch up with her mindset

She's been gone 4 months now and I miss her

I resented the past years and we clashed , but I miss her

How you are feeling is so natural, dont feel guilty for feeling the way you do

Lives are being extended when they really shouldn't be

My DF has thin shoulders too. And he has a wonderful close bond with my DS same as yours and I know exactly what you mean. I meant to write unbearable, autocorrect said unbreakable.

It is not uncommon for a respite break to end up permanent. That is how my DF went into care. It may or may not be the case for yours, but please know that it is not a bad thing if it has to happen that way, as a soft landing for you all. You are not on your own with this.

I'm almost crying at all your lovely messages, even though it's not a lovely topic. I have just told DH that I reached out on here and he's really glad. 😚

I will be seeing him on Sunday and am really looking forward to it, as we'll be away for a while after that (been planned for a while). Seems like he has deteriorated over the last couple of weeks since I last saw him though - so may be bittersweet.

Night night all.

All you want is to see the suffering end, I get that. Seeing my mum suffering I prayed for the end but she hung on for 3 more months, even the GP was amazed but it was not nice. Sending you love and hugs

All you want is to see the suffering end, I get that. Seeing my mum suffering I prayed for the end but she hung on for 3 more months, even the GP was amazed but it was not nice. Sending you love and hugs

This is entirely normal. And I’m sorry you are going through it. I have a DM with advanced Parkinson’s, Alzheimer’s, vascular dementia and heart issues. I have a MIL with Alzheimer’s. They are both in care home. I’ve been ‘waiting’ for my mother to die for around five years. I can’t believe her body can continue on - but it does. MIL is quite a bit older than my DM but was healthier for longer. However, it’s also now at the stage where we are waiting for her to go. Dementia is the single most horrific disease and although I will miss them both when they are gone, I’ve lost them already anyway. I only pray that their suffering ends soon and it will be a relief when they pass. You do learn to live this new way of normal.

I’m in exactly the same situation, and you have my sympathy. It is actually helpful to know I am not the only one feeling this.

I loved my family but the sense of relief when they died from various cancers etc made me feel guilty.. no more suffering, no more waiting, no more hospitals, no more rushing around.

My mum died late last year and I was waiting for it to happen. Mentally she had just given up - she really wasn’t bothered anymore. She just went downhill bit by bit.

Thanks for all the new messages today. I had a feeling there would be a lot of us feeling like this, or recognising the feeling from their past. 😘

The doctors have said it will likely be my dad's heart that goes first, though perhaps his lungs now. It sounds like that would be a blessing. He really does get through stuff though! I think that war generation are made of something else.

I've had a little chat with DS about how Grandpa might not quite remember where he is tomorrow. They've not been over here for a while.

Xx

I genuinely thought it would be a relief when my mother died after years of dementia. It was a huge, devastating shock. Sorry you are going through this, OP.

I think that's it - I really can't picture it being as soon as they say. I imagine I'll be shocked too, despite this feeling, and then feel guilty. 🫣 But I know it's just the anticipation of grief.

I hope things have begun healing for you @NoleenWalsh

Of course you will feel guilty, but it will pass - slowly, as you come to terms

I met someone today who I hadn't seen since mum passed. She asked how was I getting on and did I miss Mum, and in the same breath said "knowing you - no " And I had to be honest and say I didnt miss the last few years, they were tough, but I miss having Mum. The Mum that I remember during our best times . And because I was so emeshed in her later years, I had forgotten what her good times were like. And I miss that Mum and I grieve my loss of that Mum

And I think tbh , remembering that Mum who I hadn't seen for years, is allowing me to grieve

My Dad is 80, he’s physically and mentally declined considerably over the last 2 years and has some issues they feel they can’t treat due to other concerns. Sometimes it feels like he’s barely there, other times he’s just himself. I feel like I’ve been grieving and preparing for a while. Over 20 years ago we lost a family member very suddenly and it was an awful time - the way everyone found out, the shock and the aftermath was awful. Since then, I’ve always started processing and grieving as soon as there’s a hint of someone declining, I guess it’s a way of protecting myself from the awful shock we had in the past. I do feel guilty though, he may live a good while yet!

@SwingWaltz This really sums up how I feel - it's a real push-pull of complex feelings isn't it!

I'm sorry you had such a shock previously. Our mind is very good at putting barriers up in the face of perceived threats. 💐

It was lovely seeing Dad today. He seemed more of an observer but he enjoyed it I think. He looked so thin but at least he's let the barber shave his beard this week!