Mum thinks he’ll die..

[Annikaanonymous]

Dad is 83 and in a care home with dementia. Now not walking or talking, barely eating but does drink fluids. Me and my OH are due to go away in three weeks and mum is convinced it will be that week when my dad will die!

Ive tried to reassure her to listen to ‘I just don’t know what I’ll do..it will be the death of me…how will I cope (Dad has been in care home for three years next month)!! I’m so worried about it! She does have a few good neighbours and besides, it’s for one week that we are away.

I cannot reassure her anymore, what can I do/say?

Maybe have a chat with the nurse in charge to get a view of how your dad is - they have training in end of life care. Perhaps if your mum might accept some support for herself? Not sure where u are but Alzheimer’s society have links for support.
perhaps with this information from the nurse will help you talk to your mum and perhaps a named person who knows your dad at the care home could be a support to your mum when she visits while you’re away. Talk through with her the steps she can take if the worst happens - again the care home staff could help wi the this.
take good care - it’s important for you to take a break.

Don’t doubt yourself, OP.
You need a break to recharge your batteries. Go ahead with all your plans and don’t be guilted by DM.
Good idea above, to ask care team to give DM extra support and reassurance.
I guess DM can see that soon she will be facing up to losing her partner and she’s frightened. It’s not an enviable position.
I wonder if you could pay for a bereavement counsellor to chat with her a couple of times before you go off?

I don't envy you at all. My DF died a few years ago but my DM gets so anxious if we go away that I've stopped telling her that we're going. So anxious in fact that she ends up in A&E.

You've had some great advice already. Do you have any siblings? I'm guessing that you don't from your post.

If you do it might be worth talking through what would happen if one of your DPs died whilst you're away. Me and my DSis have decided not to tell the one that is away. We've agreed on which undertaker to use and will just ask them to take care of our DM until the other Sister returns.

Have you talked through with your DM what funeral arrangements she would like for your DF?

I know this sounds morbid but do you know what funeral director you would want used if it happens. That is the immediate issue and if you can say to the carehome that that is who you want to use they will arrange for your dad to be collected. Nothing else needs to be done immediately. Does your mum have someone nearby who can be with her immediately?

I agree with talking to the home. They will have dealt with this before.

I think the best you can do is reassure her that if he does she won't have to deal with it on her own. I definitely think you should go.

How far away are you going? Can you reassure her that if anything happens you will be straight home? Big difference between a week in Amsterdam and a week at a remote meditation centre in rural Australia in this context.

In my experience (personally and professionally) as long as the patient is drinking well it is a good sign. Is the care home offering him build up/nourishment drinks - they should be if not. If his swallow is still good that is also a good sign as is frequently passing urine. I hope he is ok and that you get to go on holiday

@Annikaanonymous sounds like a really difficult situation. I agree that speaking to the nursing home staff is a good idea, not to ask if you should go but to tell them you will be away. You cannot put your own life on hold whilst waiting for the inevitable, what if he rallies and this situation carries on and on. Also agree that deciding on an undertaker and letting the home know is a good plan. As an aside @Mybusyday why on earth would nutritional supplements be encouraged in this situation? Sounds like a normal part of the dying process to stop eating/drinking.

I also agree that you can't put your life on hold. DMIL was in a very similar situation 2 years ago, to the week.

It took her till October to die.

@Hamserfan - her father is still eating (a little) and drinking. There is absolutely no reason why he couldn't have fortisip drinks or such like if he wanted them

@Annikaanonymous sorry for your situation. Lots of kind and wise people on the Elderly parents threads. You should go away. If not you are literally playing into the ‘manipulation’, and I do not use that word unkindly. My sister and brother and I have had a year of our DF being hospitalised and subsequently admission to a nursing facility. He is safe and sound. Unfortunately our DM has no coping skills and is unable to deal with anything at all. Technically I reside over seas but have returned to be reasonably supportive. This means I am for some of the year living apart from my own family which I hate. Sadly our brother thinks my sister and I are not helpful enough. There have been loads of things we have done which he has no idea about, and that is over decades. He suddenly has decided to pass judgement on what he perceives as us being uncaring. We are we are simply having to manage some personal boundaries after trying to ‘help’ DM who catastrophizes everything. The barriers extend to her having made it clear she will not engage with ANY outside help, cleaner, garden help etc. We are stuck in a perpetual cycle of negativity, we are too exhausted to spend time with Dad as we have to deal so much with Mum. Step away for a while and enjoy your break. This could go on for a while. As another poster said as long as you are able to return reasonably quickly go and try to make the best of your trip. Definitely register with a Funeral Home, then you have something in place.

I wouldn't go in those circumstances.

Do you have any other siblings?

From the description I would guess he's on his last weeks but that could be considerably more than 4, possibly months, hard to say.

Perhaps get some practical things in place if you don't have siblings eg we sorted out the funeral director a few months before dgm died, had everything in place including giving the nursing home the 25 number of the fd so if we were out of town no issues (as it happened Covid struck in the interim so everyone was at home!)

It a tough call but I would go on holiday as realistically there's nothing you can do immediately and most things are online these days anyway

There's not a lot you can do whilst you're there and funeral seem to be taking at least 3-4 weeks to arrange at the moment so you might as well go. The cliche deathbed scene of family and loved ones gathered around is far from realistic!

As long as the home knows which funeral director you want to use, they can handle it until you get back.

You can't put everything on hold just in case.

@RuthW I can see your perspective however many of us have been in these situations for a lengthy time. Indeed last year we all stopped our lives as we were told our DF had 6 weeks at best to live. We are now 14 months on and he is still living albeit with a less than perfect quality of life. Very much down to individuals I would agree. In reality if the OP can get some support in place for her DM then it may be that the holiday will see OP return refreshed and ready to keep supporting her DM. It’s a tough one.

I had a similar situation with my mum when she was ill. Dementia can cause a really prolonged death and it's difficult not to put life on hold. In the last year of her life we adopted a getting on with it attitude knowing that there was a real chance she would die when we weren't there.

When she did, we were able to be there for her - which I was glad of but I know that had it happened while I was away she'd have been happy for us to be enjoying ourselves. She stopped drinking and 4 days later she died.

Very practically the only decision that needs to be made on the day or soon after is the funeral directors you want to use. Everything else like registering the death takes a few days to sort anyway. So go and enjoy your break. Your mum is contemplating a huge loss and it sounds like her anxiety is high but that is her issue. You need to refill your own cup before you support her. A very tough one - look after yourself.

RuthW · Today 12:27
I wouldn't go in those circumstances

Thats fine but others hold a different opinion. Many people are expected to pass away for months. Relatives can’t put their lives on hold just in case.

You can't put your life on hold forever because of something that 'might' happen. Nobody will give you a medal for the martyrdom.

If he is eating/drinking a little, and being well cared for, there isn't any real reason to fear that he's more likely to die this particular week, as opposed to any other week. So have a break, and use it as an opportunity to recharge.

@StickSeason great advice and yes the refill your own cup / put your own oxygen mask on analogy is really sensible. I do think we think we can orchestrate everything to happen in perfect timing. We can’t and accepting that is wise. I also think your comment about the OP’s Mum anticipating the death and the grief etc is spot on. That is her mother’s issue. I definitely feel there are times where we all try and make things fine for elderly parents. Rather like bringing up children tough love is sometimes the most sensible path. Hard I know but resilience often gets people through tough times. Our own DM has zero coping skills because she has never ever had to have any. Any problems she has ever encountered DF sorted for her or we all jumped and adapted so she got her own way. Double Whammy now. She can kick off all she likes but we cannot make things right for her. She has to deal with this, with support of course, but she has to accept this is hers to own. Harsh words maybe but factual.

In a week if the worst happened and your Dad did die when you are away the funeral directors will collect the body and take care of your Dad until you return. Reassure your Mum of this. Apart from FD collecting the body everything else can wait until you return. You need a break and there will never be a good time.

@caringcarer absolutely

Is there a nurse/dr you can speak to rather than a care worker at the home? My mum’s district nurse and family dr were able to tell us she had, at the most, days once she stopped eating and drinking (they were spot on, she passed a day or two after). Your dad is still drinking but they may still be able to give a fairly accurate time scale.

@BlueLegume were in a very similar situation. DFIL was given 3 months to live in January 2022. He's still with us.

Films and tv can often give the impression that the death process is relatively quick and the family can and do drop everything but that is unusual in our experience. It can literally go on for years.

@Annikaanonymous is your DM in touch with the local Carer's Hub? We found them to be helpful even after DMIL was in a home. They helped to arrange Counselling for DFIL, which he really needed and put him in touch with some groups locally that he still attends.

@RappersNeedChapstick great advice regarding local groups and counselling. We secured all sorts of help for our DM but she flatly refused and continues to engage with anyone except us 3. It’s horrible as she has also alienated all family and neighbours by her awful attitude yet we keep turning up fire fighting just because we feel we can’t abandon her. FOG yes.

Thanks everyone for your replies., appreciated.

@BlueLegume @RappersNeedChapstick DM refuses any local groups, etc., which I know would offer her support! Leading up to my DFs diagnosis she continued life as if everything was ok and wouldn’t attend any of their groups, despite several attempts. It would have been a good opportunity for her to receive support and even make a few good connections/friends. It then hit her hard when my DF went into the care home. I’m an only child and we have no family in the area. Neighbours are good and I know they’d help support her until we return.

It can just be so frustrating trying to help when they won’t help themselves!