Told to butt out.

[Huxley1234]

My mil is dying and has had dementia for the last 2 years. She has been in a home for the past year. My dh and bil didn’t know what to do when the dementia started and I stepped in to make sure they got her the right help. It’s been a long tearful journey but she is now reaching the end and it will be a blessing as she is in a lot of pain (tumour in her stomache) that they find hard to get in top off. Doctor suggested hospice but the home she is in which is brilliant feel it would be better to end her life there with them. As kind as they are she doesn’t know who they are from one minute to the next so dying in a familiar place is not an issue. My dh phoned his brother from the car when we left her today. They think she should stay where she is but I chipped in saying I felt the hospice might be better( as I have experience with my dad spending his last days in one) at taking her pain away. Well my dh finished the call and told me to butt out as it was their mother and also he didn’t interfere when he felt I was wrong about my dads end of life care. My dad died 4 years ago and I’ve always worried about decisions I made. We’ve been married 41 years . He’s apologised after I told him how hurt I am but he still doesn’t want saying anything else about it. I’m the one who’s shoulder she cry’s on and I’m the one who had to make them understand how bad things were for her in the beginning. I’m just so pissed off with him. My opinion just doesn’t matter. Just wondered if anyone else has had to deal with this.

Difficult one - is the home gold standard for end of life / end of life care framework - if so she will have the same care at both.

I can see it's a very difficult time for him - seeing his mum that way. And people handle it in different ways. I am sorry you have been at the end of his snappiness - but maybe it's time for them to make the decisions and the mistakes if that be so.

I hope she passes quickly and painlessly for her sake.

(I work in a very large, very high standard nursing home and we do get palliative cases in - we work with the local hospice as well).

Hi gabster....the home is great but they have to phone for the district nurse to come and administer the pain relief as it is a home for dementia patients only. Today the district nurse came to the home and set up a syringe driver which will be fine if she doesn’t pull it out. I was just anticipating this problem when I agreed with the doctors decision. I suppose we’ll just have to wait and see.

Maybe reality is really hitting now - before, she was OK, then she was ill. Now she is going to die.

Unfair though it feels, she's their mother and if they're finally at the point of wanting to make the decisions, it is their place to do so, even if they aren't in a frame of mind to be tactful about it.

I think you should back off, but let them know you will be there for them all, rather than being the driving force for a while.

Difficult one, as theres not a nurse present from the sound of it her pain is not being managed, when we have someone in end of life care a syringe driver will give constant pain relief but they will often require further breakthrough doses. This would bring some difficulties with advanced dementia as she may be unable to verbalise when she is in pain. Hospices are excellent at pain management and would absolutely get that under control along with other symptoms of advanced malignancies such as nausea etc. There would always be nursing staff present so at any time pain relief could be requested and given within 10 minutes or so and there would also be at least 4 hourly checks to see what she required at that time.
On the opposite side they are not usually set up for advanced dementia and you may find that they wouldnt have equipment such as low beds/pressure mats and potentially not the staff to sit with her on a 1 to 1 basis if she is prone to getting out of bed and at high risk of falling. The staff at her home will be much better trained at dealing with this side of things and whilst you say familiarity wont be an issue, you may find she becomes acutely distressed with a move at this stage. Thankfully the hospice will be able to offer some medical relief for this.

Just as I'm sure you have been through with your dad as she deteriorates she will become less responsive and the dementia will not be so much of an issue as she will be bed bound. Because of this, if it were me I would choose the hospice. It's different if it's an actual nursing home able to give breakthrough pain relief as required but I personally wouldnt want my loved one in pain until the DNs could get there.

But at the end of it all your husband has requested he makes the decision with his brother and it's his mum who is at the end of her life so their responsibility to make these big, difficult decisions. I understand he was unkind today but hes obviously not coping all that well with it and has requested you take a back seat at the mo.

Having dealt with a parent in similar circumstances, he’s grieving already as he’s forever lost who she was, and that’s causing him to make deliberately hurtful comments like re your dad’s care. Not an excuse, of course, but grief particularly for your parents is a complex trauma. I’d take a step back for now and let him come to you - big hugs to you all xx

I agree with you that hospice would likely be better (and I speak as someone with personal experience) but I wouldn’t blame your DH for snapping at this very difficult time. Emotionally, it probably wouldn’t make much difference to your MIL in the circs you describe so, as long as they keep on top of any pain, the nursing home should be ok too

This is so sad. My mum died in her care home and was fine. But she had a different situation, although also dementia.

YOU made the right decision for your dad. You know it, or you would not be asking your dh to make the same decision for his mum.

Please take comfort from that but accept your dh and his brother will make the decision for your MIL.

Make peace with your dh, please.

Get really comfortable with the good decision you made for your dear dad.

Prepare to be a should for your dh when your MIL goes. Life is short and 41 years together is long. He was wrong to say that mean thing and wrong to tell you to butt out - but he is under pressure.

Just love everyone in the situation including yourself.

XXXX

I know what he said was unfair and hurtful, but it's a really stressful time for him, and that phone call in particular would have been so. Add in that it's always annoying when someone other than the camera tries to add something (I used to drive my late husband nuts when I did that!), I think his snappiness is forgivable.

To be honest, the care at the time will be every bit as good as my husband had when we nursed him at home until his death. The district nurse came every day, and his pain signs were monitored by us and the carers who came in twice a day.

You think that someone with Alzheimer's wouldn't be thrown by a new environment, but actually, almost always they very much are. Even if they can't express an awareness of their surroundings. When my MIL had to spend a couple of nights in hospital, she was traumatised by the change, and we had to request that in future, she would not be admitted to hospital, and ask her medical care would be at her care home.

shoulder

Damn. The care at the time = the care at the HOME

I'd give him the benefit of the doubt on this one. Reality is setting in for him and he's grieving already.

When my fil was dying, my dh was in the kitchen on the phone to the hospital. I came in and switched the kettle on. He walked over and switched it off, finished the call and lost the rag with me because I was "more worried about tea" than his dad. It was the grief talking. Allowances have to be made at a time like this.

I'm sorry but you have to accept DH and BIL's choice, just as DH accepted your choice. I say this as someone who has walked this path too often over the last year. I truly hope MIL has a peaceful and quick death 💐

So sorry for what you are all going through, it's truly horrible.

I guess the only thing you can do is just be there for him, prehaps it's sinking in for them now that she is at the end of her life and these decisions they're making will be the last for her and for them.

I also think this is one of these things where the person wants to take this on their shoulders alone and do what can be or has to be done for their parent.

I don't know how close you were with your MIL but its a hard time for all. Prehaps just take a step back and let him deal with it, and just be there for him. x

It would be unusual for a Hospice to take a patient from a nursing home unless they had complex symptoms.
The palliative care team would usually work with care home staff to provide expertise in palliative medicine.
Hospices often have very strict criteria because the funding and number of beds are limited.

To flip the other side of the coin, my grandmother passed this year in a nursing home from age related dementia and heart failure. She also lost her sight in the last year. We were given the option of hospice or hospital end of life care. We declined as felt her bed was what she was familiar and the move may scare her. She couldn't have had a better end to a horrible prolonged two years. The staff knew her, she was in her own room, the doctor attended and a plan was put in place with pain relief (I suspect more to make her sleep). She passed peacefully in her bed that she had been in for three years. I've also had experience of hospice care too with my husbands grandmother, I'll be honest although it was better than the hospital setting she had (cancer), I'd take passing while being oblivious in my bed any day without being moved to the unknown with new staff etc. The end will happen, it's just about what would make her most comfortable.

Given the circumstances I'd let it go. No, it wasn't a nice thing to say but your husband is under a lot of stress and emotion right now. I'd cut him some slack and just go with what he wants to do for his mum.

Dying parents don’t come with a manual. Cut your husband some slack. He may have supported you when you were in a similar situation, but it’s very different when it’s your own parent! We’re all new at this - each parent has a unique situation & needs to be treated as an individual.

My dad died at his care home - I’m his bed, in his room and with familiar surroundings. It would have been cruel to move him at this stage of his life. Horses for courses isn’t it, but I do think you sound a little self martyrish / controlling - sorry!

My mother died in her care home. We knew that she was dying and they were wonderful. The night rota nurse would spend the night in her room, working on papers while everyone else was sleeping. The nurses and carers would come to say goodbye every time they went off shift. She was never alone and hung on so long that I joked that she was waiting to be left alone - and, yes, she died with no sign of its imminence in the night when the nurse was taking someone to the loo. The managers came to her funeral too.

Really sorry to hear this OP. Dementia is a fucking horrible disease, for those suffering and their families.

I don't know if this helps but my dear old nana had dementia for 9 long years, and spent her last 6 in a wonderful care home. She was never ill until her last 6 months when she had problems with her eyes, throat and a recurring and very painful UTI.

We too discussed moving her into a hospice when we knew the end was near, but where she was had been her home for 6 years. The staff all knew and loved her.

I still believe she hung on overnight and passed at 07.10 one morning - her favourite nurses came on shift at 7am and went straight to her. I'm.glad they were with her when she passed.

Sending you lots of love x

OP Your Husbands Mother is dying, why dont you cut him a bit of slack, it us not all about you . Yes you have and are doing the best for your MIL but ffs he is about to lose her

jent13c your explanation of the hospice is why I felt her pain could be managed better there. Thankyou everyone for your thoughts. I’m glad I put it in Mumsnet as you’ve made me see sense. I’m very close to her and I want her to be pain free as do her sons but she’s not my mum so I’ll leave the decisions to them.

It’s a dreadful situation but with all due respect this is not about you. Of course you’re still grieving for your dad and if you have doubts about your decision-making for him it’s natural that you want to do ‘better’ this time. But this situation is about your MIL, DH and BIL, not you. You need to take a step back a support your DH in his decision making and grieving, not impose your opinions.

Yanbu