DSM just informed me of DF's diagnosis.

(15 Posts)
OfMe Fri 06-Dec-19 06:00:51

Yesterday, DSM rang to let us know that DF's scan results came back and he has mild dementia. DH and I are not surprised, as we've thought as much for a few years, but have tried not to be 'those' children, and respected their privacy and autonomy to deal with this in their own time. I think they're both a little relieved to find out that, (as I have mentioned to them before) there is medication he can take to slow or halt the progression, and there are services they can access to help them both maintain their independence and social lives for as long as possible.

However there are some long term things that I've come to thinking about, around how we manage this as a whole family. While they've not been brilliantly supportive of me, DH and the DCs, and DH (and others) have said they've done nothing but profit from DH and I and our situation, I don't really feel I can walk away from my duty as a daughter to try and help my DF in his time of need.

Although every family is unique, ours is a little complicated - I'm an only child, DH is one of 3, who all live in different parts of the country, and his parents are a little younger than mine. Because I had 2 DCs with a previous partner before I met DH, he ended up moving in with us, so we've ended up making a life in the same town as my parents. In fact, we are renting one of their two houses from them. It's too small for us, as a small 3-bed house, and in a dreadful state of repair (needs new electrics, heating system, roof, kitchen, bathroom, whole redecoration and floors), but it's quite a lot cheaper than renting the same size elsewhere. The reason why we can't afford to rent a suitably-sized place though is mainly down to the fact that DH and I have two sons with ASD together, so currently I'm their carer. I've also been doing some work experience and studying, so that I could get a job which would pay enough to cover the costs of the extra care - so to make it worth me working, essentially. The 2 oldest DCs now mostly live away - one is at uni, the other is with his dad most of the time (his choice), but DD comes back for 2/3rds holidays and DS stays every other weekend and half the holidays. As it is, bed space is a bit of a juggle. We get by, although I worry that DD and DS never feel like it's their home, as they're always on sofabeds/sofas/airbeds when they come. (DS3 & 4 can't share as they try to kill each other, and I do mean this literally. We're also still trying to get DS4 out of our bed and into his own, but that's an ongoing thing.) The council have given us some funding for some adaptations, but after one piece was done, I had to stop anything else being done as the heating broke down and the roof was leaking badly. These have been 'patched up' by DSM, but I'm still not sure we're going to be in the house long enough to have the work done. (You have to repay 50% if you don't stay in the house for 10 years.)

Currently DSM and DF live in a lovely 2-bed cottage (that they have fully renovated over the past 6 years we've been here, so it's in really good condition). Size-wise, it's fine for them obviously, as they use their spare bedroom as an office, but the stairs are quite steep, and I worry that it's not going to be practical for my DSM to care for DF in the long term, especially once his mobility starts to decline.

SO - AIBU to suggest to DSM that - long term - we should look at selling both houses and buying somewhere big enough to accommodate all of us? Then we can split the caring duties between the 3 of us (perhaps with the help of DD/DS1 if and when they're around)? I know I hate the thought of DF going into a home once my DSM cannot cope any more, and although I worry about DF going through an aggressive stage, we'd be better equipped to handle that with DH and DS's help. Otherwise, it's going to be DSM on her own with DF, and so I think he'll probably end up in a home sooner than if we were all together.Or am I being bonkers for thinking that 3 adults can care for 1 adult with dementia and 2 kids with ASD? What I also don't intend it to end up being is my DSM looking after the 3 of them while DH and I work F/T. Nor do I really want it to be me looking after DF and DS3 & 4 while DSM gets to swan about doing the same old socialising she's always had. I was of course, having just finished studying, looking to start a F/T job, but that might not be possible now. So, AIBU?

OP’s posts: |
vivapuff Fri 06-Dec-19 06:34:24

YANBU for suggesting this to DSM and having a conversation about it with her, but I a worried about your attitude to DSM. Your DH thinks she is profiting off you (while you live for cheap in their home! It sounds like you are taking advantage of them. However maybe they are ok with that as they are happy to help you out). DSM swans around?

You would be VVU if you are looking at this set up as a way to control your DSM's behaviour. Maybe she doesn't want to be a long term caregiver. Maybe she and DF have long discussed what to do in this situation and a care facility is the best option.

YANBU to start a conversation, but you would be U to expect any particular outcome or to be upset if DSM is not interested in the idea. Please don't bully DSM. Surely the situation is already stressful for her

AJPTaylor Fri 06-Dec-19 06:39:57

That sounds like it would be very difficult indeed to be honest. Putting you all in one house might solve your housing issue for now but do you really want to combine all the issues into one household?
What happens when df passes?
In all honesty it would make more sense to carry on focusing on your studies and ask your father to please just maintain the house. Surely that would havr to be done anyway?

MereDintofPandiculation Fri 06-Dec-19 10:35:23

Or am I being bonkers for thinking that 3 adults can care for 1 adult with dementia and 2 kids with ASD? Yes, frankly. 3 adults can manage 24 hour cover on an 8 hour shift ... and you will come to need 24 hour cover, if only for turning him over in bed to avoid bed sores. And of course what this doesn't take into account is time off for relaxation, and cover for when one of the three adults is ill.

It's not the intensity of the work that wears you down, it's that you never, ever get any relief. You can never relax because at any moment you may need to deal with a crisis.

TooleyVanDooley Fri 06-Dec-19 10:40:42

What do you mean by they profit from you?

Are you really suggesting that they should house you, DH and 4 kids for free?

titchy Fri 06-Dec-19 10:44:20

That's a ridiculous idea. It would be hideous for all of you. Your oldest shouldn't even figure in this.

I don't know how old your youngest are, but imagine they're teens/adults. Three violent and frightened adults, one adult at work, one elderly woman, and you, frustrated because you've never been able to use your education because you've ended up as de facto carer for them all.

You have young vulnerable children. They should be your priority, not your df. If he goes into a home, so be it.

Knittedfairies Fri 06-Dec-19 10:49:23

I think you're being naive, but with the best intentions; you need to step back a bit.

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Justmuddlingalong Fri 06-Dec-19 10:51:49

No. You're looking at the situation through rise tinted glasses. I wouldn't even suggest it to them.

PetCheetah Fri 06-Dec-19 10:52:11

I have 2 DC with ASD and a MIL with dementia. There is no way I could cope with living in the same house as her. Also I think she wouldn't find it very easy living in a house with my 2 DC.

PostNotInHaste Fri 06-Dec-19 10:56:38

Absolute no from me, that will be horrendously hard on you all, especially your children.

Myyearmytime Fri 06-Dec-19 10:57:48

Carry for someone with dementia is super hard work . And they will end in care home when you can't cope .
Your asd kids need to have future sort too.
And I am guessing her but either you or DH will ASD traits and that will make caring hard work fir the one that has not got it.

Get your house fixed .
Build a nice life for yourself.

GooseberryJam Fri 06-Dec-19 10:58:18

As someone with a parent who has dementia, I would not advise this. It gives you a route to 'keeping' their house and its value, sure. But you'll pay in other ways. And you can be blindsided by how things turn out. You're assuming your step mum will remain healthy and be capable of caring. What if she also develops dementia, or some other condition, or dies suddenly (as my mum did) leaving you with your dad and your children as your sole responsibility?

ImaginaryCat Fri 06-Dec-19 11:10:26

I'm always slightly bemused when people are so against care homes for people with dementia. Why? It's the best place for them. It's incredibly hard to keep someone with dementia safe, they wander off, they leave appliances switched on..... a care home is set up to protect them.

It's also better if they can move in earlier, while their brain can still create memories of their new home. The later you leave it, the more likely they are to wake up every morning terrified of this unfamiliar place.

This romantic notion of caring for a family member at home is quite frankly anathema. Dementia destroys everyone around it, and it's the ultimate cruelty to inflict that on young children.

Elieza Fri 06-Dec-19 12:29:34

It’s a kind thought OP. But i think it would be too much work. You’d need to hire a carer to look after those who need looking after during the day surely while you are at work. One person couldn’t do all that. But perhaps you would be ok with that?

Do you get benefits for anyone in your current household? If so look into the government scheme to get you free central heating and insulation. That could be a start to improving that house. You don’t have to remain there after it’s done for years or anything. You just need the landlords permission. And now would be the time while he still has some of his faculties? You should look into getting a power of attorney so you can make decisions about his care and his assets. Ie the house you stay in. Otherwise things could go badly wrong. Also a will. You could find out that your home and everything you expected to inherit, even if just sentimental stuff not worth anything, goes to your step mum otherwise. If she subsequently needs to go to a care home perhaps your house could be sold by the state from under you to pay for her care and you’ll be out in your ear. I may just be scaremongering and others may know more facts but I just mean get all the business up to date while your dad still has moments of clarity.
It’s likely he will need a care home eventually when he’s trying to escape in his pj’s at 2am thinking it’s daytime or putting the cooker on and forgetting. If you stand to inherit the house perhaps he could sign it over to you now. Otherwise you have no security for yourselves?

OfMe Fri 06-Dec-19 17:29:29

Thanks for the replies everyone. I think that yes, given what you've all brought up - things I'd not thought of yet, I don't think it'll be a good long term solution. It's not going to be good for the DCs or DF to be under the same roof, and it would drive DSM bonkers to live with the dcs.
I think I'd thought of it, because some other relatives had done it and it had worked for them, but there weren't small children involved, and the elderly relative didn't have massive health problems either. Thanks for putting my head on square. We do have PoA after DSM, but I think everything goes to her after he passes, so I think we'll just prepare to move out in the scenario that they may need to sell the house for his care, or if she just decides she needs to at some point.

OP’s posts: |

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