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Caring for in laws - don't know how to proceed

(17 Posts)
selfcensored Sun 07-Apr-13 19:49:20

My wonderful DP is in a difficult position, and I'd appreciate any advice.

His parents are young (mid 60s) but both unwell with terminal illnesses (MS and early stage Alzheimers). They currently live in their own home with support from meals on wheels and carers twice a day, but they don't seem to be coping. My DP has just got back from his weekly visit and is very concerned that they're not taking their medication or keeping the house clean and tidy.

We are expecting our first baby in July. I have antenatal depression and have had to give up work. I'm thoroughly ashamed to say that I am not able to help the situation, and in fact make it much worse. I am putting a huge strain on our finances, and my DP often has to mop me up when I am unable to cope with daily life.

What can we do? PiL understandably don't want to go into sheltered accommodation or a home. We can't afford more care. DP suggests moving in together, which would mean all of us moving in to a new house near where they currently live - I like his parents but am not sure I could live with them, I'm not sure how a newborn baby will fit into the mix, moving someone with Alzheimers is not great, & neither DP nor I would choose to live in that area, although we could commute to work.

I am also worried that DP feels like he is the only solution to all of our problems - that he is responsible for his parents, and for me, and soon for our child, too.

I just don't know what we can do to make things better - does anyone have any practical solutions or ideas for what can happen next?

Alibabaandthe40nappies Sun 07-Apr-13 19:55:58

I'm sure they don't want to go into a home or even sheltered accommodation, but if they really are struggling then that is what will have to happen.

Realistically, if your DP is working then all the care will fall to you. Are you both prepared for that to happen? Are you prepared to bring your baby up in a house where they won't be the number one priority?

Having a child is a huge strain on a relationship, because priorities change. You really do not want to bring older needing lots of care and support into that equation.

I do feel for you all, especially your DP because he must feel torn. But don't rush into something you will regret.

AThingInYourLife Sun 07-Apr-13 19:59:26

What problems would be solved by them moving out their current home into a new home they shared with your family, including a baby?

selfcensored Sun 07-Apr-13 20:05:27

Thanks AThingIbnYourLife, I think my DP thinks he needs to be close by to keep eye on them and that can only be done if we're all very nearby. Currently we're an hour away so he makes the trip once a week. We couldn't afford to live round there unless we pooled our resources.

I feel like they're not yet at the stage where they need to go into a home, and because they're so young it's particularly difficult (all the other residents will be much older than them). But equally, I don't think it's a long term solution for us all to live together because their needs will get greater and greater and, selfish as this sounds, I don't know if I am prepared to look after them for the next 20 years.

NotGoodNotBad Sun 07-Apr-13 20:11:41

If you did buy a house together, why would it need to be where they currently live, and not where you live?

selfcensored Sun 07-Apr-13 20:16:46

Because they've lived in that area for 40 years, and it would be difficult to uproot them. Also, we live in central London at the moment and are hoping to move somewhere more suitable for the baby asap, but have no particular ties to any one area.

KirstyJC Sun 07-Apr-13 20:24:12

Don't all move in together!! It will be a nightmare for all of you.

You are having a new baby and struggling - no way you can also be responsible for looking after 2 adults with complex needs as well. And they will be complex and will only get more so as time goes on and their conditions advance.

They probably won't enjoy sharing a house with a new baby either, and you will all end up getting in each others' way. People with dementia are obviously individuals and the disease impacts everyone differently, but one common effect is to change day/night routine - often people are asleep during the day and then awake all night. Not good with a baby in the house!

And what about the housing itself? If they move anywhere else it would need to be suitable ie level access, spacious rooms in case of future equipment needs eg hospital bed, wheelchair etc. If the person with Alzheimers is a wanderer (or becomes one) then that adds a whole new set of problems - getting out of the house, getting lost, falling over at night because they can't see when the lights are out etc.

So sorry you are all going through this, but realistically they will HAVE to move into a sheltered accomodation -type place. They might not like it, but it doesn't seem that they have any alternative.

Unless of course your DH is suggesting that he gives up work to become their full time carer........thought not.

KirstyJC Sun 07-Apr-13 20:27:14

And assisted housing doesn't mean a retirement/residential home. There are plenty of places out there that offer supported housing to people of all ages, they don't need to be stuck in a home with 'old people'.

You need to have a family meeting ie get together with them, your DP and their social worker(s).

Find out what supported housing is available in their area. Maybe if there is somewhere suitable and you want to move anyway, then you could get a house near their new place?

AThingInYourLife Sun 07-Apr-13 20:27:33

OK, well 20 years can't be your horizon here.

It's too long and there are far too many unknowns.

AFAIK (and I could be very wrong), early onset Alzheimer's can progress very quickly.

Once you are dealing with severe Alzheimer's, you are looking at care that can't be provided by family.

It's too specialised and too constant (24/7). And also too upsetting.

I know a lot less about MS, except that it is very variable interns of speed of decline.

It seems to me that all if you moving in together solves one problem, which is the distance between you.

But it also creates massive inflexibility in a situation with far too many unknowns. Who will get decline fastest? What care will they need?

Once you guys have moved your lives there (including your child(ren)), you are all stuck under one roof and all their equity is tied up in your home.

Whatever money is in their home needs to be accessible so you can pay for whatever care they need that they won't get from NHS/SS.

If they are not ready for a home yet (and it sounds like they are not), some nice sheltered accommodation with meals delivered, a nurse on the premises etc.

Be really clear though about what the problems are now, what they are likely to be over time, how different eventualities might be accommodated, how that will be afforded.

Don't allow your DH to fall into some mad, sentimental self-sacrifice.

This is a long game. He needs to play it that way.

There are a lot of needs to be balanced here. Get advice from Alzheimer's Society and whatever the MS org is. Try to strategise well.

Good luck to you both smile

selfcensored Sun 07-Apr-13 20:28:08

No he doesn't want to become their full time carer and neither do I. But what can we do? Is a home the only other option?

KirstyJC Sun 07-Apr-13 20:38:10

You need to find out what the options are in your area. There are often day care services and activities that people can go to but I think they vary from place to place.

But the bottom line is, if they cannot live alone (together but in their place) as they are unsafe to do so, even with all help available, then yes I'm afraid they do need to move. Sometimes, in order to do what's best for people, they don't get what they want.sad

Some places have different types of accommodation on the same site, eg seperate apartments within the grounds of a residential house which also has a nursing wing. Some places have specialist dementia care. If your parents want to stay together, you will need to know what is available to them as you likely want to minimise the times they will move house - you don't want them to move into supported accommodation now, then eg the person with dementia moves to a residential home a year later followed by a nursing home the year after that.

Sit down together with their social workers and find out what is available. But I think pooling your resources is not a sensible option, if they are likely to have enough to need to pay for their own care/accommodation then that might leave you and your DH/ child in a vulnerable position - again, find out from the social worker BEFORE any decisions are made.

You can only make the best decision with the information you have at the time - so make sure you have all the information.

selfcensored Sun 07-Apr-13 21:00:34

Thanks Kirsty, you're right. We probably need to go to social services and see what all the options are. It's just so desperately sad.

KirstyJC Sun 07-Apr-13 21:11:23

It is sad, and you must all be struggling to work it all out. Sounds like you are a close family and whatever happens, it will all work out OK. Good luck to you all.

And also, just as an afterthought, if they have been struggling in their own place, a move to somewhere else might actually make them feel better too. I know people who have said that once their relatives went into more supported accommodation, they really perked up - because they were living somewhere clean, given hot meals 3 times a day and showered and dressed in clean clothes.

It can be hard enough to keep on top of everything involved in running a home when you are well - if there are 2 of you and you're not well then it must be an awful struggle. The removal of this burden can really improve peoples' quality of life - so please don't think you or DH are failing them if you do end up seeing them going into care.

selfcensored Sun 07-Apr-13 21:54:55

Thank you both. You've made me realise that moving in together isn't going to work on any level. I think I need to sit my DP down and make him think about all the implications

OxfordBags Mon 08-Apr-13 10:24:22

I think it's lovely that your DP wants to do the very best for his parents, but his ideas aren't practical or fair on you and the upcoming baby. And, not fair on them, either; at some stage your care for them will become inadequate and actually bad for them. You and his child need to be his priority family at this time.

I have a relative with early onset Alzheimers. It's bloody awful. They degenerate much quicker than older people who develop it. What's more, they are still usually quite physically strong; the family member's wife was trying to look after him at home as long as possible, but he became bery aggressive and violent, also trying to sexually attack her (luckily, he would forget what he was trying to do very quickly and wander off, but still awful for her). I'm not trying to scare you, but have heard this quite a lot about other male sufferers of EOA. The female sufferers also seem to get v aggressive too (I don't know which one of your ILs has it).

Also, MS sufferers can live for decades. Obviously, your IL might have been given a grimmer prognosis, but even then, looking after them will require a huge amount of constant physical exertion on top of everything else.

Care homes are not all the terrible ones you see on tv. Remember, they only get on tv precisely because they stand out as awful compared to the majority good ones. My relative with EOA is in a lovely one, and my Gran, who is just generically senile, has actually improved since going into her home, because she has now has so much attention and stimulation, medical help on tap, great fresh-cooked food on site, etc. And these are not private, expensive ones either.

Good luck to you both, it's a very difficult time for your family indeed. But your depression needs equal consideration in this; looking after a newborn plus caring for two adults with differing, complex and very stressful needs (some of which could be dangerous for you and a baby) is hardly going to improve your mood.

TeenyW123 Mon 08-Apr-13 18:54:26

Have a read on AIBU about caring for elderly parents. It's an eye opener. I agree that you need to look at every option, not just the one where you and DP care for them.

Thinking of you.

Teeny

NormaSpoonOeufEggcher Mon 08-Apr-13 19:02:59

Could you see if lcd have anything in your area? www.lcdisability.org/

I have heard good things about them.

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