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Dementia & Alzheimer's
Struggling
confusedofengland · 29/04/2019 21:32
Lovely lovely MIL has vascular dementia. Diagnosed just before Christmas, but probably been present for a year or two. She's largely ok, but has times when she forgets who FIL is & doesn't recognise her home etc. Also asks the same question a lot & can be short with our DC.
PIL live 130 miles away, so it takes us about 2.5 hours to get there. DH works full time, plus does football coaching at weekends plus is on parish council. I work part time, including some weekends & we have 3 DC under 11, 1 with autism. We see them a couple of times a month, they come here or we go there. Can be for the day or overnight. We stay with them overnight as we can't afford a hotel. Money is tight for us.
Understandably, DH wants to make the most of MIL still knowing who he is & he also wants to give FIL a rest from caring for MIL. So, he wants to start going to see PIL once a week & only work 4 days a week. This would impact us hugely as a family. It would mean we would struggle to pay perhaps for DC's activities etc & he would take our only car so I'd be without for that day. It would also mean he wouldn't see our DC much as at the moment he only sees them for about an hour a day plus about 9 hours a day at weekends (he is at football training 3 hours each weekend day). DS2 with autism would struggle with the change in routine at first, but would get used to it eventually.
I can see why it is so important to DH to do this & I will support him by holding the fort at home & selling stuff to make money etc. I haven't told him my worries as I don't want to upset him as I know it's already tough for him. But if it was you, would you want me to say something? Or am I being horrendously selfish even thinking like this? I kind of feel like I'm losing DH, which makes me sad, but I guess things are worse for him 
confusedofengland · 29/04/2019 21:36
I should say that SIL lives a couple of miles from PIL & sees them most days, she does not work & her DC are both secondary school age, no SEN. DH feels guilty that he can't help more & SIL is doing more than he is.
Leyani · 29/04/2019 21:39
If you can, grin and bear it as much as possible. It’d feel horrible to be the one in the middle and know you’re not doing right by either your mum& dad or your wife& kids. It’s a really tough situation for you both though. Can you see if you can get friends / your family / social networks etc to support you in practical ways as much as possible. Of course if you find you’re cracking under the strain you’ll need to say something about how you’re trying to be completely supportive but just can’t manage it all on your own and if you can sit down and try find a solution together.
FlibbertyGiblets · 29/04/2019 22:02
Football training both Saturdays and Sundays? That isn't ideal in itself.
I understand parish council.
Can you up your hours to counterbalance the drop to family income?
Now to inlaws: have they had care needs assessed for MIL and a carers assessment for FIL? Claimed Attendance Allowance? This can unlock things like nil rate council tax and free up money to pay for bought-in care to relieve SIL FIL and DH.
V difficult situation all round.
Chocolatepeanuts · 29/04/2019 22:07
This is very tough however I would be asking DH to temporarily give up the football training. That way he can spend one full day at his DPs and one full day with you and the DCs without a financial impact, and the DC wont miss out so much on seeing him. Perhaps the DC could visit their GPs as well which they wont get a chance to do if he goes on a weekday.
confusedofengland · 29/04/2019 22:44
Football season is coming to a close now so DH will hopefully be around a bit more at weekends for the next few months. But after that he'll be doing it every weekend day again. He is chairman of the youth football team & doesn't feel he can miss any of it, plus he does admin & general maintenance down there. I have asked him repeatedly to cut down but he won't.
My work is zero hours so sometimes I will have more hours but I can't predict when. I can only really work school hours & term time, plus weekends, as my mum can't look after my DC on her own so has to have them with my dad, which means only weekends. Before/after school club would mean I'd only bring about £8 home for a morning's work.
DH has told FIL about claiming various bits but not sure if they've done it yet. I think even if they had DH would want to be there as he feels guilty that he's not.
I honestly feel like atm something has to give & that will be us, DH just feels such a duty to everything else & that we will be there no matter what, but I can't run the family on my own
confusedofengland · 05/05/2019 14:18
So, an update on this because we're struggling even more
MIL has been worse this week - not recognising home, not believing FIL when he tells her things, so SIL has to reassure MIL over the phone. This upsets normally very calm, unflappable FIL. SIL, in turn, is ringing/texting DH 5-6+ times per day to relay all this. He then feels useless & guilty, as he's 130 miles away at home & can't do anything to help.
The upshot is that although he's here with us in person, his head & heart is not. He's snappy & distant, although he says he's not. He would rather be there & I've told him he should go. He's thinking about it. In all honesty, it would break my heart- he's not been home before 8.15pm this week, mostly 9pm or later, so he's not seen the DC in the evening. He's seen them for 30-45 mins each morning, maximum. So I'd planned this weekend as family catch-up time, just being together. But he's obviously not feeling it, so it's tricky.
I hate this whole situation, I hate dementia I feel like he's losing MIL & we're losing him
Chocolatepeanuts · 05/05/2019 17:34
I think you need to let him go. It sounds like MIL is rapidly deteriorating and he needs to be with her. It wont be forever. Would he be entitled to carers leave?
CrotchetyQuaver · 05/05/2019 17:50
He needs to cut back on his other commitments so that you and his parents don't suffer too much. The football seems the obvious one to drop or cut back on as it's the entire weekend. It's not fair of him to let you and his DC take the biggest hit whilst he remains available to everyone else. My mother has vascular dementia, she went mentally and physically downhill very rapidly last September and went into a nursing home in January. She is happy there (and they look after her very well) and it has really reduced the stress and strain on the rest of us. So it might possibly not go on for too long before there is a big crisis and tough decisions need to be made. 
confusedofengland · 05/05/2019 18:22
I am encouraging him to go. He's been getting very stressed about it all so I suggested he go, at least while he's not working today & tomorrow.
He hasn't gone yet, but might do tomorrow. He also wants to go next weekend, with me & DC too, but I'm not sure that won't stress both MIL & DS2 (with autism). I think it's easier if he goes on his own. I just find it tough to deal with the DC not understanding why they don't see much of Daddy any more.
Xiaoxiong · 05/05/2019 19:36
I agree with everyone else, the first thing to drop must be the football before work and impact on earnings. The DCs will adapt and understand that their father has to spend more time with their granny right now who isn't well. It isn't forever but this is the time that FIL and SIL need his support more than the DCs need him. The DCs have you as well and someday it may be you needing to be away from them more for some reason. Let DH focus on his mum while you focus on supporting him and the kids - I've seen my parents going through this with their parents and the grieving happens now, while the dementia sets in. When my grandparents finally passed it was not as significant as it was like the person themself had departed years before and been grieved for already.
I don't think you're losing him if he is spending extra time with his mum while she still remembers him. It's good for DCs to see men and women in caring roles - all too often, as has happened in my parents' families, the daughters are expected to take on all the caring responsibilities even while working and doing childcare of their own while the sons seem somehow to wriggle out.
confusedofengland · 05/05/2019 21:55
Sadly DH can't get any kind of leave, as he works contracts. If he doesn't work, he doesn't get paid.
I do agree it's good for the DC to see him in a caring role, although in our case SIL doesn't work & lives locally, so she is a lot more able to help out than DH.
I think Ds1 & DS3 will adapt & understand in time, but I'm not sure about DS2, he really struggles with change.
I think we'll really have to take it day by day & see how things go. I am there for DH & the DC & I hope they know it.
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