Reassurance we have made the right decision

[Proudteachermummy]

I'm a long time lurked but not posted.
Looking for some reassurance really that DH and I have made the right decision.

My FIL is terminal ill and 2 weeks ago we were given the devastating news that his care is being moved to end of life and palliative care. He is bed bound, can not do anything including feeding by himself, he is on a liquid diet and relies of a breathing mask and a cough assist machine. He has 24 hour nursing care. The doctors can't tell us how long but likely to be in the next few weeks as deteriorating quickly.

Anyway we have 2 young children 9 and 6. When we found out about the end of life care we took the children up to see him and it was the most amazing time, laughing, smiling, sharing old memories and lots and lots of cuddles. DH and I had already spoken about making that visit be the last one for the DC but has we left and one of DC said could that be the last time they go up to see him as he was so happy (he hadnt been like that for a while) and she wanted that as her last memory of him. We said to her of course and we want her to remember FIL happy.

Anyway the DC haven't been up any more, we have spoken to FIL and MIL about it and explained the impact on the children of seeing FIL suffering etc, they were both amazing and completely understood. FIL was understandably a bit upset because the DC are what keep him going, but as parents the well being of our children has to come first. (I sound selfish don't I, that my children come before a dieing man).

Anyway a family member has commented that she feels we have made the wrong decision, that he will now give up because he isn't seeing his Grandchildren and that we are basically making our DCs grieve before they need to. (Bare in mind, MIL, DH and I are the only ones who visit every other day, we all take it in turns, so he always has someone with him). It has been one of the hardest decisions to make but seeing your DC worried about visiting because they don't know how he will be when we visit. Our youngest DC even said what happens if Grandad dies when we are there? I just can't put my DC through it anymore, does that make me sound awful? This family member has been quite vocal on their thoughts, although rarely visits FIL and hasn't seen our DC since last Christmas, when we visited their house.

DH is struggling so much seeing his DF dieing and has been amazing in caring for him, this family member has now made him feel 10 times worse thinking us stopping the DCs going will kill him and that we are putting our children through the grieving stage to soon.

Maybe we are wrong, but I have to think of our DCs and the memories they have to live with.

Any thoughts would be great. We are just parents, in a very difficult and heartbreaking sitution, trying to deal with it the best we can.

(Sorry for the long post, it's been playing on my mind)

Right decision, also I think videos of and from the children is an excellent idea. Something I wish I'd done more of when my mum was poorly.

We made a similar decision when bil died. All the kids would have been v shocked to see their loved uncle deteriorate and we needed to hold him up, rather than have to support kids who were distressed. I think it’s fair to say that someone will always have an opinion but you have to stand by your care of your kids. If it helps, get them to record small video messages to play him. I talked a lot to a nurse counsellor about this and in her experience, the dying who struggle to hold on have a worse time; those who withdraw into themselves a bit are calmer. Really sorry that you’re going through this - it’s horrible.

I can speak as a "Child" (well, I was 17) on the other side of this

My Uncle was dying of cancer, he was only 32. Anyway I clearly remember my Dad collecting me from college the afternoon my Uncle passed, and took me to my cousins grandparents as they were there (all very young) and Dad returned to the flat where my Nan, Mum, and two Aunts were, with my uncle .
Mum made the decision that it would be best I did not see him . She wanted me to remember him in happier times , not like he was at the end . She thinks I won't forgive her but, to me, there was nothing to Forgive and now, as an older person, I am glad to have those happy memories intact .

Thinking of you all OP

Can they draw him pictures and write little notes so they stay in touch?

In terms of the decision making on this it really is how you and your DH feel. I think your DC have expressed their views. The only other people who could possibly have a legitimate say are ILs - who seem to have been supportive.

That’s a terrible thing for a third party to say. He is in his final days - a visit is hardly going to change the prognosis or extend his life in any meaningful way.

It may cause your FIL even more stress to see what could be an at best subdued or , worse, an upset reaction of the children to him lying there in a very medicalised situation. He has memories of a lovely episode with them, as do they.

Trust your instinct, OP

I think you have to go with what suits you and yourkids you know them best.

Personally I would take mne but I am very matter of fac with her and explain things and often leave the choice up to her. She is older now so less of a issue but I don't hide the gritty side of life or death and make it normal not scary or frightening.

We make death horrific. Yes sometimes its violent or uncomfortable or downright painful but all of that is life. If my preference was for her ot to see I would tell her that but still allow her to make the decision - as I say she is 13 now but would prob have been like that from about age 10 ish.

I recall seeing grandad dead at age 6 it upset me but didn't traumatise me, it wasn't horrific but sad to me.

I think the thing to hang on to is that your child has actually asked not to go again.

I don't think there is a right answer. But you have to do what you think is best overall.
My Mum died 2 years ago. She lived with me during her last couple of months and it was incredibly hard on my 8 yr old DD. But, I thought at that time, my priority was caring for my Mum. For the last couple of weeks, she was in hospital and then a hospice. I didn't take DD every time I visited, but she did come with me to the hospice and saw her the day before she died.
We're a couple of years down the line now and I can say that whilst it was tough at the time, DD has been philosophical about seeing her beloved Granny die. It hasn't stopped her remembering the good and happy times, and in some ways I think it helped her grieve less painfully. She found the death a release from the stress we'd all been living with.
It's a tough call with kids though, some might find it all too much, but I think my DD appreciated the fact that we didn't conceal important things from her.
One booklet I found very helpful was one from Winstons Wish, which is a charity to help families deal with serious/terminal illness and has some lovely ideas about things you can do to create bonds between children and hospitalised parents. We did some of these with DD and Mum which we have kept.

Thank you so much for all your replies. It really has been one of the toughest situations we have been in.

FIL illnes has been a long progressive one, where the DC have seen him deteriorating for many years, the nature of his disease has meant that he has lost mobility and slowly it affects every possible organ and body part. The DCs have very much been with him on the journey and are very aware of what this next stage means. I think as parents there isn't an easy right or wrong way, but we have always spoken to the DCs about his illness and what is happening. My eldest even fundraisers for the charity who support FIL.

This final decision is been so hard but again due to nature of his illness, this end part isn't pleasant for him and those around (consultants have explained in detail this to my DH) and just feel our DCs don't need to see the cruel side of dieing. When DH and I were visiting Friday he began choking and it was awful to witness and awful for him, the look in his eyes. I don't want that for our DC.

We definitely as a family haven't been treating him as if he has gone already. The DCs sent him a voice message when we visited Friday and DH and I show him videos of things they have been doing. He is able to speak to the DCs has his voice is almost gone and due to the breathing machine it is difficult for him to be understood.

MIL and FIL have been very supportive and MIL even said she has been struggling watching him suffer so feels for the DC it would be so much harder.

I want them to understand death and life but also at 9 and 6 do they really need to see the full cruelty of death.

Again thank you for all your replies, it really has been a big help. As parents you are always faced with difficult situations and just want the best for your DC

*isn't able to speak

I'd be led by your children. Explain to them it might be upsetting and how he is likely to be and see if they want to go or not. I spent some time with a dying relative and whilst it didn't traumatise me or anything it was pretty horrible and unfortunately those memories are much clearer than the ones that came before. It's a shame as we did so many lovely things together, hobbies, holidays etc but the strongest memories are of him dying. If they see him dying this may be how they remember him. I was 11 I think. It's probably because at this age your memories are much stronger than when you're under 10.

one of DC said could that be the last time they go up to see him as he was so happy

That seems an odd thing for a child to say unprompted. I don't think many children of that age tend to think like that.

Are you sure they didn't pick up something from you-even if it was a brief comment of "the children will have such happy memories if that's the last time we see him"?

It does seem difficult if the "grandchildren are what's keeping him going" and it could be weeks, so I can see where your family member is coming from. They may have also heard from fil/mil how upset this has made them, when they wouldn't have told you.

From my side, I didn't see my gran "one last time". She lived a long way from us, and we saw her regularly, but when we were told she had days to live df took dsis down to see her. I was deemed too sensitive, and at the time I was very happy with the decision. It was a few years later that I was hit by the sense that I'd not had those last few memories, and I regret not asking to go.

@beamur thank you for the recommendation, will have a look. The charity who support FIL have given us some ideas to support the DC. They each have a memory book which they have added photos and memories from over the years and FIL has added his own memories to it. I lost my own father at 9 years old (it was very sudden, he went to work and never came home), our DCs very much know all about my Dad and talk about him as if they knew him x

OP, I think relative is being out of order and should not be guilt tripping you and insinuating that he will die sooner.
If your children are saying they don't want to see their grandad again then fine, they are old enough to make a decision imo. However, if they did want to see him again (what would you do if they really did want to??) then I don't think you would be doing them any favours from protecting them from the 'cruelty of death'. Yes death can be cruel for some people but on the whole death is a natural process occurring at old age or as a consequence of an illness, and it sounds like your FIL will pass away in his own bed, surrounded by love and hopefully not in pain. That imo is not a cruel death, but a very dignified one. My dc has seen their grandparents on their final days (one passed the day after). It has done them no lasting damage and yes they saw their nan very ill and in and out of conscientious but we have very open conversations about the reality of death and I think that that is positive and natural. I am also not British and I do think that British are way more uptight about death, which I have not found to be helpful IME.
I hope that the Christmas period is kind to you and your family

His death is unlikely to be peaceful due to his breathing difficulties (but we are very hopeful he may just slip away) we have that confirmed by the consultants. Yes I would take them if they asked, one DC was missing him yesterday and I asked if she wanted to come with me to see him today and she said no but I'll write him a letter. I wouldn't stop them if they really wanted too.

I think you’re doing the right thing. My children were very close to my mother but it was just me and my siblings who spent her last days in the Hospice with her (and that is what she wanted). No one should be putting a burden of guilt on you and suggesting that you are somehow shortening your FIL’s life by protecting your children - that is total nonsense. I hope you are able to have the best Christmas you can in the sad circs x

You should do what you and your PiLs feel is right. It's nobody else's business. I feel very much for you, it's so very tough for all of you. 💐

I think the vocal relative clearly has no idea what state he's in, and as such if spouts any more criticisms, should be told to go visit themselves before insisting young children go.

My nieces and nephews (late teens / early 20's) struggled to see my mum before she died. I don't think I'd let my kids visit if I were you. Tell your MIL / FIL they're not up to it. Very hard for them, but I do think you have to think of your children.

Yes, I think if your kids ask to see him, then I'd facilitate that, but otherwise no. Let them take the lead.

You have made the right decision, best to leave things as they are. You have weighed up a balance of interests. It being Christmas makes it harder. Been there with my DF who was in hospice in final days.

Please follow your own, and your DC's, feelings. My then teenage DC visited my mum in hospital just before she died. They both said they found it really hard to get the picture of her so poorly out of their heads and wished they hadn't gone. My niece, who was a similar age, was with her when she died and felt she'd done the right thing for herself. Everyone responds differently and and no one way is right.

I think you’ve made the right decision for your children. Whatever you do is going to feel ‘wrong’ in some lights because there’s no right way. The cards and notes are a good idea, so grandpa knows your children hold him in their hearts. I hope your FIL passes peacefully💐

So sorry for such a difficult situation for you all. You know your children best so please don’t waste more mental energy worrying about it.

To the relative making such thoughtless suggestions - maybe they are handling the situation in a different, ie. not as good, way? Sometimes people fixate on the strangest things to avoid dealing with the matter at hand. If the topic is brought up again, it may be worth gently pointing out that not seeing the DGD is not finishing him off, it’s his disease.

Just an update for those who replied earlier today.

This afternoon DH and I visited FIL and after seeing him today, we are both reassured that we have made the right decision. We were called into the nurses office and they explained that FIL is really struggling, he is breathless, unable to eat or get fluids down as he chokes each time needing the cough assist machine to get it back up. He is struggling to have a drink as without the breathing machine he is unable to get his breathe. He is also extremely agitated and stressed. This was very distressing for us to witness (so goodness knows what he is thinking and feeling), so we are glad we didn't take the children. The nursing team have now advised it's likely to be days now not weeks.

Said family member has since sent me a text and said they have been to see FIL and actually apologised for what she said and now understands our decision.

It's going to be an extremely difficult Christmas but at least when it happens he will be out of pain and suffering.

Thank you all for the support

for you OP, its hard enough for you and your DH to see your FIL like this so let him go out on a high in your children's memories, so you are doing the right thing.

I hope he goes peacefully and it's going to be a tough few days for you all.