supporting dh through difficult time (long)

[thepixiefrog]

Hi

I need some advice from people who have lost a parent to a prolonged illness, or who has been close to someone who has. I don't want to give too much detail as it may out my family, and my tablet won't let me nc!

My mil has an illness that will shorten her life. When she was diagnosed 2 1/2 years ago she was told to expect to live 10 more years(ish). She was devastated and entered a real depression, which she never really came out of. She is better than she was, but some days she is too upset be around the DC as she is heartbroken that she will not see them grow up.

Last week she was told that her illness is developing much more rapidly than anyone anticipated and 5 years from diagnosis would have been more accurate. The consultant has put her on a list for a certain procedure that is very dangerous,but if it works could be a complete cure.

She would have to be in quarantine for a minimum of 3 months after the procedure, in hospital for 6-9 months and there is only a 50% chance of surviving a year after said procedure. Even then there is only a 25% chance it will be successful and she may die.

Dh is in shock. He keeps having panic attacks and is very teary. Mil is ecstatic, however. She views this as a way to beat her illness and cannot understand why anyone is upset. Tbf, nobody has really explained why they are as they don't want to upset her.

I know this is selfish but my priority is dh and our children. Wibu for dh to explain to mil that he is upset as she is going to die in the next 3 (probably 2) years, and that she could choose to have a relatively comfortable time surrounded by family, or she can choose to be in isolation with very poor quality of life. Dh is very worried that she may choose the procedure and spend her last days all alone and in pain, regretting her decision.

Also, when she starts talking excitedly about her chance at beating the illness do we fake it and join in, change the subject, or be honest about how we all feel? We don't want to rain on her parade but we don't want to do her a disservice by hiding our feelings and avoiding the reality of the situation.

What can I do to help dh through this?

Bump

What an awful dilemma to be in. I'm afraid I have no real advice, but just wanted to hand hold.

Thank you :-)

Does anyone have any advice?

How awful, OP. I have no advice, other than I think your MIL should be given ALL the information, all the opinions, all the stats, so that she can make an informed, educated decision. Once she has made that decision, it is hers alone to make and you will need to support her, either way.

Not a nice situation to be in, for sure.

Surely the Dr's have told your MIL the risks and consequences of the operation, and explained her choices. She has come to that choice.

You have stated you want to support your DH, he should support her choice, regardless of how he feels. By all means he should express his concerns to her, but really he should support her choice.

Not that this helps, but if I was given her options, I'd do what she is doing. The choice seems to be die in 2 1/2 years anyway, or have an operation and be cured, or if the operation doesn't work dying in any event, just a little bit sooner.

sending hugs hun, this is not an easy situation for anyone.

I agree that unconditional support of whatever decision she makes is everyone's only option however hard that may be on everyone.

As callous as it sounds if she is going to die at some point without the operation and the toss up is have the op and either die sooner or be cured I think I would prob encourage the operation route but that is just me.

Hope your dh is ok and you all manage to support each other

Thanks everyone. I think everyone is in shock at the moment and your advice really helps clarify our thoughts.

been in a bit of a similar situation, listened to mil and thought all was well, dp didn't really share his thoughts with me at the time (in hindsight he is like that abit) and it drove us apart for a while. listen to DH and do exactly as he wishes, definately don't try to encourage/sway him in the direction you think is right but support him in whatever decisions he makes would be my advice.

Hi notany

The op was advice for dh as much as for me. He's really upset cos he thinks his DM is throwing away precious time with her dgc for something that is unlikely to work. All the statistics are for young healthy people, so if they have a 50% mortality rate in the first year what chance does a 65 year old have?

He knows he has to support her final decision, but doesn't know if it's reasonable to tell her how he feels first. He's really open about stuff, and I try to listen, but as I have still got all 4 of my parents I haven't a clue what he's going through. I feel so bad for him.

Could you get some advice on this from something like the Macmillan charity? My friend is a Macmillan nurse and I remember a (rare) conversation with her about her work where she told me that they encourage everyone in the family, including the patient, to focus on the 'life' rather than the 'death'. I think that applies here. Your DH is (understandably) preoccupied with keeping death at bay as long as possible whereas his DM will take any chance at life she gets.

We're all selfish about the people we love and we forget that it's their life to live (or not live) as they see fit. My own Dad has an incurable, degenerative condition and, selfishly, I want him around for ever too. If his DM was 10 years younger and quite healthy but planning some risky adventure would he stand in her way on the grounds that it was throwing away time with her DGCs?

I'd suggest you try to get him some counselling.

Hi cog, he has a counsellor already. He's arranged an extra session this week because of all this. Thanks for the MacMillan suggestion, I hadn't thought of that.

He's not the sort to stand in her way of making a decision, or to bully or manipulate her into getting his own way. We really just wanted to know if it was reasonable to express our worries/fears (just once and in a calm manner), or if we just all keep it to ourselves.

Again I would say that the risks would have been fully explained to your MIL.

To be quite honest, if I knew there was a chance of a complete cure, even if it was just a minor one, I would take it. If she doesn't go for it, she dies. If it doesn't work, she dies. If it does work, she's cured. For me it would be a no brainer.

Yes she has 3 months in quarantine but that's not to say that she will die in quarantine. Yes it will be very hard for her family not being able to reach out and connect with her during that time, but if it's her only chance then they must allow her that.

The doctor would not have put her down for treatment if he did not think that she stood a good chance of coming through. Doctors and hospitals are always pessimistic with their information as they don't want to give even the slightest shred of false hope, so I should imagine they have been pretty honest and open with her about the procedure and her chances.

It would help your family and your dh enormously if you could have some advice from the Macmillian group, if that's appropriate. If not then there are many groups and organisations who help families of seriously ill people, even if it's just helping you to come to terms with her decision.

I know your dh might think that she is being selfish in denying her family the right to look after her during her dying days, but look at it the other way. She has a chance here of a cure. Would it not be selfish to insist that she dies surrounded by her family? Who does that really benefit?

She's made her decision and I really do think that she ought to be supported in that. Talk to her about how you feel by all means, but don't pressurise her to change her mind as that would be very wrong.

x-posts with you, sorry.

People are so very different. Some people would just be unable to enjoy 3 years knowing with certainty they were dying. Some people would much rather do that and be able to focus on the here and now during those last few years.

If your DH is satisfied that she genuinely understands the risks and really, really has made this decision, then I think all he (and you) can do is support her. For some people, a bit of 'faking it' is what they need from others in their hour of need and to add joy to their last days. It may not be the decision he or you would make, but it is ultimately her decision and her life.

Really hard situation for you all, I'm very sorry.

Of course it's reasonable to express yourself. As you say, he's not going to try and persuade or bully her out of it. He loves her and doesn't want to lose her and I'm sure she feels exactly the same way. He doesn't have to stay relentlessly cheerful. He doesn't have to fake anything. He's got the opportunity to say what he needs to say. Not everyone gets that.

What a difficult situation. I can understand your MIL focussing on the idea of a cure although also, I share your concerns about the reality of this. But it is her choice at the end of the day but I do think it is right for you to express your concerns and not keep everything to yourself.

It's a little bit close to home, tbh, because my DH is ill. Without treatment he has a matter of months to live. He's having some treatment but isn't prepared to spend what might be a longer but still limited lifespan being put through operations and procedures that will remove any quality of life. My dsd, in particular, is finding this really hard to cope with because we all want our loved ones to be around forever. But like your MIL, we've got to go with his wishes. I've encouraged dsd to express her feelings to her father though and it is right for your DH to do similarly with his DM.

I'm so sorry Pandemonia, what a horrible time this is for you. Thanks for taking the time to reply to me, your contribution is really appreciated.

You are most welcome, thepixiefrog. It's really only being in this situation that has brought home to me the whole matter of choice over one's own mortality and how difficult an issue it is for everyone involved to come to terms with. So I do feel for you and your dh at the moment.