To be disgusted at what my DH has said.

[Sweetcherrypiee]

My DH has very sadly just lost his DB after a long illness. His DBs wife has early onset dementia (mid 50s). They were together since they were 18 and my DH has known her since then.

Yesterday we went out for a meal to discuss things as a family. DH refused to have her there and his words were ‘she’s not my responsibility’. He has basically wiped his hands of her now his DB has passed away and has basically said after the funeral he won’t be there to support her going forward. I feel disgusted with his attitude towards her. They never had any issues or have argued. I know he is grieving but she has also just lost him and with having dementia needs extra support.

His DB would be so sad at this attitude also.

Let me guess- DB put no plans in place for her care/support after he died but instead expected/assumed your DH would take on the burden. Now DH has realised that it all rests on him and she could have years left of distressing cognitive deterioration he's understandably thinking oh fck, it's all on me and has stepped back massively to assert a hard boundary.

Frankly, I don't blame him. Social services will try to offload care onto anyone who is offering any vague form of support- I've even seen them do this to the neighbours of elderly people with dementia who work full time and really don't want full responsibility for their elderly neighbours but they still tried to put them down as their NOK and use them as reasons not to sort proper care out.

This x100. Been there done that (or rather, got caught with that) and got the t-shirt. Was awful. I was single parent to 3 young kids and they wanted me to take on an elderly far out relation (not a grandparent or even a great aunt or uncle - further out than that). And I just couldn't - I'd started off by being kind and helpful and I ended up getting phone calls all hours and expectations to take said relative to appointments and the like. I had to step back for my own family and if I had my time again I'd be clearer from the start.

OP what are this woman's care needs? Does she still know who her BIL is at this point? What's actually going on here?

And yes after seeing SS try to palm off care regardless of how safe or appropriate I don't blame your DH for being careful here.

I honestly think it depends what level of support she needs due to her dementia. If it’s low level such as help with navigating finances/ bills, remembering appointments/ getting to them and help accessing support via social services etc, then I think your husband is being unreasonable

I wouldn't call that low level support. If OP's husband is working when is he supposed to fit all this in?

Once SS get a sniff of you offering any sort of help they're on it like a car bonnet and before you know it you're the NOK and they have you het for everything.

I would call it low level support, people view things differently of course. The things I mentioned as low level would be at most once weekly, likely less. The high level stuff would be multiple times per day. The previous poster was right about needs only increasing over time though.

I honestly think it depends what level of support she needs due to her dementia. If it’s low level such as help with navigating finances/ bills, remembering appointments/ getting to them and help accessing support via social services etc, then I think your husband is being unreasonable

I wouldn't call that low level support. If OP's husband is working when is he supposed to fit all this in?

I wouldnt call that low level either. Helping someone with dementia to pay their bills or attend appointments can take hours and hours of time.

As for accessing help from SS?- haha good one! It can take months and months to get them to even reply to your emails (it took them 5 months to get back to me regarding help for my dad who had dementia), let alone assess someone for care (It has to be an email as they are constantly engaged or they don't answer the phone, even if you do get through they say they'll get back to you and they don't), I know this because I've had to do it. The idea that you can just ring up SS and access support within a day or two is absolutely laughable.

Just on this

it’s low level such as help with navigating finances/ bills, remembering appointments/ getting to them and help accessing support via social services etc

navigating finances bills - was horrendous. They couldn't remember what they had paid and not paid, I paid bills for them by setting up DDs and then when their bank statements came in they rang me upset because they didn't know what the money going out of the account was for. And they accused me of stealing money when I had gone with them and taken cash out to take them to do groceries. And then they would forget they had groceries or forget how to cook and phone me in tears because they didn't have anything to eat (even though they did).

Remembering appointments - you have no idea how complex that became. As their dementia worsened, they didn't even remember where they had put the letters that had been sent to the house about appointments. And if the care givers were organised to come to the house very often they would turn them away because they didn't need help. And how do you think they were getting brought to the appointments? They weren't capable of organising a taxi and they wouldn't get in one I had organised and if the ambulatory transport turned up they turned them away.

As for accessing help via SS - their answer was could I not just do care/looking after/take the person to live with me who lived 25 miles away and had 3 kids and a full time job and was a single parent. It was before email and I spent lunchtimes on the phone on hold trying to get through to various people and so many days of leave to go to appointments either with or without the relative to organise things to help them cope.

In the end I dropped the rope and said this person isn't even really related to me and I cannot cope I am doing no more. And I stepped right back. It felt so cruel and it was hard to do but I wish I had never started and just said no right from the get go.

If the woman's husband was that worried about her he would have put arrangements in place while he was still alive.

Totally agree what you are describing here is not low level. I was thinking more along the lines of being able to set things up such as direct debits and the person with dementia still able to recognise that they are necessary outgoings. Knowing that they have an appt coming up but being unsure of the actual date. Obviously we have no idea how severe the ops husbands sil’s dementia actually is as she hasn’t given much indication of that.The degree of help required can be so vast, from minimal support to full care and of course it changes over time. It would probably be helpful to know how bad the dementia actually is in the context of this thread.

@tacosforbreakfast

Your experience sounds very, very similar to mine. Paying bills wasn't an easy or quick job for exactly your reasons.

Taking him to appointments would also take ages - he'd forget to get ready and so I'd have to help him get dressed. Then, add the journey there and back plus waiting to see the consultant or the doctor (they'd always be running at least 40 mins- an hour late with their appointments, you know what doctors waiting times are like) then drive him back home. Then, he'd say he was hungry so I'd make a bite to eat. Then I'd drive home and he'd be ringing as soon as I walked in the door upset about something he'd forgotten and this would go on and on and on for the rest of the day etc.

Doing that whilst working full time was utterly exhausting and the amount of annual leave I used up just to take him to appointments meant that I used to have barely any left for doing things with my own family - my DH and kids. It took a huge mental and physical toll on my life and it's not to be taken lightly. What might initially seem like "low level" support often turns into many hours of work once you throw dementia and confusion into the mix.

That's not my experience of how dementia works - it wasn't that they knew they had an appointment and forgot the date. it isn't linear like that.

It’s mine in the earlier stages.

Exactly this.

All I said was that wasn't my experience of dementia it wasn't linear like that. I'm sorry if I've offended you.

Basically she is at moderate stage. She has carers coming in but they only stay 45 minutes and apparently haven’t been much help but she does actually shout and swear and get quite aggressive with them. Longer term he wanted sheltered accommodation or dementia care home for her but no actual plans where put in place so I don’t know exactly. They did have a close relationship including family holidays but now DBIL is gone he just wants to cut her out of our life completely

Moderate dementia

At this stage the problems are more apparent and disabling. The person may:

• Be more forgetful of recent events. Memory for the distant past generally seems better, but some details may be forgotten or confused
• Be confused regarding time and place
• Become lost if away from familiar surroundings
• Forget names of family or friends, or confuse one family member with another
• Forget saucepans and kettles on the stove. May leave gas unlit
• Wander around streets, perhaps at night, sometimes becoming lost
• Behave inappropriately, for example going outdoors in nightwear
• See or hear things that are not there
• Become very repetitive
• Be neglectful of hygiene or eating
• Become angry, upset or distressed through frustration.

There is no way I'd be taking on someone with that level of care needs, who was aggressive already, especially not a sister in law.

That's a massive massive ask.

Why don't you go and visit her then?

Maybe he cant handle the shouting and the aggression - it's not an easy thing to cope with and not everyone can cope with that. She might not even recognise him. Again, the long term plans really ought to have been put in place prior to this so I don't know why his DB did not do that, but he should have.

Longer term he wanted sheltered accommodation or dementia care home for her but no actual plans where put in place so I don’t know exactly.

Your DH likely wants to step back because he realises that if he doesn't, he'll be left making the plans.

The more you post, the more I stand by understanding where he's coming from.

IF you want to take it on step up yourself and do it. No one is stopping you are they?

And yes, the aggressiveness. I couldn't.

So no plans then. And your husband is expected to do it instead?

Longer term he wanted sheltered accommodation or dementia care home for her but no actual plans where put in place so I don’t know exactly.

And how is your husband supposed to put that in place?

If he is not interested in seeing her anymore is it that he has only ever tolerated her for his brother's sake or he cannot cope with her illness?

She is so young for this.

but no actual plans where put in place so I don’t know exactly

Why not? I thought the DB was sooooo worried about her- even more than himself and yet he has arranged basically nothing whatsoever to help her in the future has he? This is 100% on him, not your husband. You should be angry at him for leaving his wife completely adrift, not your husband who didnt actually make vows to her.

Yes, nearly all of this.

She is remembering he is gone but not long after she really has no idea what’s going on or she is thinking that he’s still in the nursing home/hospice that he was moved to.

I know plans should have been made. It was a long illness but things were looking up for a bit and then it came back, not long after he was told it was terminal, he deteriorated quickly.

Im just worried about her future. I will be there for her and make sure she has food in etc but my DH basically said no, it’s not my job. what if something happens to her?