Managing expectations

[Canteon]

I’ll start by saying DH’s family is very dysfunctional. The family are enmeshed and very codependent if that means anything to people. DH has two siblings who I will call DS1 and DS2. DS1 has their mother living in their house. That is their choice to do that. His siblings don’t have other family. We both work full time and have children with additional needs.

There are 60+ outside care hours per week because the mother cannot really be home alone anymore due to her needs. The mother is very high needs but also she is also difficult in other ways.

DS2 lives isn’t involved in the day to day care as they live abroad but they would have a say about how the care should be provided.

DH minds his mother 1 evening per week and does medical appointments infrequently maybe on average once per month. We might have the odd family event at weekends but that is not often.

DS1 wants respite which DH organises but it is becoming nearly impossible to get the respite organised in advance. The last time DH has contacted over twenty providers which obviously takes considerable time and respite was only possible to organise within 48hrs as last minute beds came free in the homes.

We do not want to commit more to the situation that we already commit for various reasons but DH’s siblings have different expectations about what we should be doing. There is an option of a home for MIL, there is the funds for doing that. What are people’s thoughts on how we can manage expectations?

What exactly are their expectations?

That DH will cover the respite is the main one. We are not willing to do that.

DH say to DS1, I understand it’s really hard work looking after Mum and you’ve been doing an amazing job. I work full time and look and have two disabled children so I can’t commit anymore time. Respite places are increasingly difficult to book in advance. Do you think it’s time for Mum to have 24/7 professional care?

You assert your boundaries and suggest various options. What other people do is their decision.

Ah ok. It's just a case of gently explaining to them that you won't be providing respite.

Could you at least organise the respite so that the main carer can have a break?

DH is responsible for his mother's care. It is in place with carers. She lives 240 miles away. His sisters live abroad and do sweet FA.

DH has decided that when the time comes she will have 24 hour care at home, rather than going into a residential nursing home. Her estate is significant and could fund it albeit reducing inheritance.

His sisters will have an opinion about saving money/their inheritance. One has visited her about half a dozen times in the last 30 years, the other twice (and DH had paid for her flights). Needless to say it is the sister who has visited least who will have the strongest opinion.

DH will brook no arguments from either. They have lost their right to have an opinion. DH and I have PoA.

I will support DH. Apart from that I keep out of it. It's not my monkey.

@Canteon I would suggest you keep out of it too, but if your DH does little more than sweet FA, then neither he nor you have any right in relation to future decisions.

DH does organise the respite but it really is not guaranteed and not organisable in advance because the respite is in nursing homes and they only have respite beds if a bed becomes temporarily available. He has spoken to twenty places now. Same story with all of them call back two days before you want it and last time it was the same. DH has called ones miles away so he is casting the net wide. We don’t have the resources available to step in. If there are flights etc booked that is unworkable but DS books anyway so there will be a time when it doesn’t work out.

Ok. So you can't rely on a place being available. That leaves live-in care.

Can you organise a live in carer?

He has tried that before and no is the short answer. There are not enough local carers to provide it. This time she needs to leave the house though for various reasons so live in carer isn’t an option.

Live in carers aren't usually local, they travel around. However if is she has to leave the house then a care home it will have to be.

I'm feeling quite sorry for the main carer here to be honest. Looks like the only answer is a permanent place in a care home. Nothing else is feasible is it?

Agree completely that it is up to the lead carer where the mother should go.

No inheritance expected from any parents here. I’m not sure why anyone would expect that from parents but that is another thread.

I agree I do feel sorry for the main carer too and they have definitely done their bit and deserves respite. However we have limits on our time and energy too and we work at full pelt a lot of the time so we have to consider that.

There is a huge back story here where the main carer did not want the mother to move in and the other DS abroad convinced/guilted them. There is much more to the issue than I want to it on here but we have to maintain really tight boundaries because there are some serious back issues.

I get that there are back issues that you don't want to have to put in here but that doesn't change the problem you currently have.

The fact remains, the only option for respite is for your MIL to go into a care home.

I'd be inclined to let your dh deal with it, to be honest.

Honestly it sounds as if the key issue here is the dreaded relative abroad.

They aren't doing any care, aren't getting tired, aren't seeing how bad the situation is. But do feel they can boss the local relatives around and veto sensible suggestions.

Your best option is to form a united front with DS1 and tell the abroad relative they can come over and do the work or get stuffed.

I suspect the main carer may want someone else to say enough is enough it’s time Mum goes into a home but doesn’t want to make that decision herself.

I think why the backstory affects here is because there is not and healthy communication or boundaries allowed in the family. Asserting boundaries is met with significant push back.

DH will deal with it. I am more trying to communicate with him our limitations from my point of view.

“Honestly it sounds as if the key issue here is the dreaded relative abroad.”

No question that is a big issue here.

The relative is abroad, they don't need to be told anything until your MIL is set up in a nursing home already and then it's a done deal.
DS1 has done enough and you really can't help them as your hands are full as well, Make it clear to DS1 that you will give them all the support to get MIL in her own place, take the guilt away from them and stand up for them if DS2 starts to kick off, it's cruel to leave them in this situation.

Having been in a similar ish situation I think the most important thing is to work out what you can give. Working with DH and working out your boundaries. Then communicate this to the main sister.

DH should offer to tell the sibling aboard what is happening and that he knows it’s in Mum’s best interest. If this sibling kicks off he can tell them they’re welcome to come and collect DM from the care home or before then and take her in.

Honestly I don’t think so. There is enormous enmeshed and codependent behaviour between them. They are both getting something out of it. They do want respite though.

You can always say the choice was taken out of your hands by a social services assessment as well.

They may well want respite. However it seems that due to changes in your local nursing home economy, respite is now rarely or not available.

So the question is: what do they want seeing as they can't have respite?

I think DH need to contact adult social services and ask them for help with respite/ live in care move to a nursing home.

This is such a good way of putting it.

DH is a complete eternal optimist and he thinks it all works out in the end but I think inevitably at some stage it won’t and that would be to my family’s huge detriment if it didn’t because he obviously would have to step in.

He has done. They fund all her care. They push it back to him to find it though.