Moving mum to live with us... where to start?!

Caring for someone with MS
1

Hi All,

First post here, hoping someone might be able to suggest something!

My mum has had PP MS for around 25 years. She’s struggled through but the last couple of years she’s really gone downhill. Numerous chest infections, a nasty bout of pneumonia, extended stays in hospital have all taken their toll. She’s been in a wheelchair for around 20 years and has been struggling with pressure sores for around 15 years. After a 3 month stay in hospital the year before last she started losing the use of her hands, and as a result of her being in hospital, also lost her physio place. She has had some private physio on and off over the last couple of years but nothing routine and now we’re in the position where she has little ability to move her hands at all. She has little quality of life. To top it all off, I live 500 miles away.

My brother has been living with her for the past 4 years but has now decided he needs to spread his wings and is planning an extended trip to the other side of the world. Mum cannot live on her own anymore so we’ve come to the agreement that she should come to live with us. We’re currently looking for a property where we can all co-habit (myself, partner, dogs and mum) but the question is, how do we go about moving her? (The property will be bought by myself and my partner, she owns a proeprty but we’re considering the money from that to go towards her care)

She has a social worker (who she rarely sees) and various OT, MS nurse, consultant types and has various equipment items lent from the local authority (hospital bed, hoist, commode, wheelchairs). I’m assuming that the social worker SHOULD be the main point of contact for transferring things (including her financial benefits) but, based on previous experiences, dealing with the local authority can be a VERY slow and time consuming process. The last thing we want is to have the move dragged out over a 6 month plus period during which time mum could quite easily get another infection, and generally disheartened by the whole thing.

Has anyone moved a relative with MS? Or anyone with MS moved across local authority boards (in this case we’re looking at a move from Wales to Scotland)

Any advice, or suggesitons gratefully recieved! (Have tried contacting my local CAB but they never have anyone available on the phone!!)

Many thanks xx

2

Hi, this is gonna take some careful planning, methinks!

Have a look at your local GP surgerys services and see if such a body as Community Matron` exists. I know most GP surgeries have them in England, but dunno about Scotland. We used the services of such a lady when we brought ma in law to live with us and then when she was too ill, into a home.

This woman who helped us was like a whirlwind! She knew exactly how to get things moving fast.

The move shouldnt take an age if all is in place well before it is needed.

Other than that, if it was me, I would contact Social Services and say how urgent this is.

I would also speak to an OT about getting mum assessed for her needs, as I think you may have to return all the equipment and obtain new.

Good luck with finding a new home for you all.

luv Pollxx

3

My Lord, what an undertaking.

I have some experience of moving an elderly relative long-distance and sorting out (separate) accommodation, but that person was fairly able-bodied and able to live semi-independently at the time of the move and most of the subsequent work needed to cope with increasing disability and failing health came further down the line. In other words, it was an altogether less challenging business than the one you face.

It took just over six months, by the way, from the decision point and that was pretty much flat out and everything going fairly well in terms of property sale and purchase and refurb. So one thing I would say is that these things do not happen quickly, even when the case is a relatively simple one.

Your case is not a simple one. One thing to consider is, can you break the project down into stages, so you do not have to do everything at once? For instance, is your current property completely unsuitable, or could your mum move in with you while you sort out something permanent? To be frank, I think you ideally need a chance to try living together to see whether this is actually going to work for you all. If you can do that without having to make major financial commitments and life changes that will be hard to reverse out of, that would be good. But I can see that this might be very difficult. I assume that you and your partner have had very frank and gloves-off discussions about what all this will mean for your lives together in practical terms? I am sorry, that is a difficult subject, but so very important. The more open and shared expectations that you and your mum and your partner have about how all this is going to work, the better.

I cannot begin to advise on the practicalities of transferring care etc - talking to your mum’s social worker and to adult social services in your area might be somewhere to start, as might your GP. What I would say is that, if you think you might be left in the lurch on carers to come in and help, there are decent agencies that can provide care privately (your local adult social care people will be able to give you a list of the private providers they use themselves) and this can be easier and quicker to set up if your mum has funds - even just as a flexible supplement, this can be invaluable. One final word on care - do not even think about trying to do it all yourself.

Good luck with it all.

Alison

4

Hi Both, many thanks for your replies.

Yes, we know this is a big undertaking but in reality it has to happen. She’s not in a position to look after her own house and we are not prepared to move her into a nursing home, especially not one 500+ miles away.

We are preparing to move house as we speak, purchasing somewhere that would suit all of us. Luckily we are financially able to do this without the sale of mums house, so that’s one issue removed from the equation.

Poll, re OT, she’s been recently reassessed by her OT where she is now, any idea about whether she would need to be reassessed by another OT up where we are? Ideally we need to have our place set up in the same way as what she has down there so seeing as we know everything she needs, I wonder how we communicate that across… Interesting about the Community Matron. I would think there is something similar up here, will give the surgery a ring.

Alison-yes we are all on the same page as to what it means for our lives (but it’s always been something I’ve expected to deal with at some point, with mum having had MS for so long). The idea about private care is a good one. I can’t expect the ‘public’ system to be on the ball from day 1, if we could give them a ‘grace’ period of say, 2 weeks and have private care in the meantime that would give some leeway.

To be honest, with the house situation being sorted (our side anyway, hers will sell eventually but we don’t need the money for the move to happen), I would HOPE that the other areas of the move (which are basically down to person-power) would move along swiftly, but you just don’t know with these things. As Poll mentions, you can get really excellent and efficient people on your side in which case things get done. OR (as we’ve experienced in the past) you can get stuck with a person who is quite the opposite…

Unfortunately we don’t have the support of my mums mother on our side. She and my mum don’t get on (from my mums point of view) and her presence stresses my mum out more than anything on earth. My grandmother says that she can provide the ‘care’ for my mum but in reality, it’s not what mum wants. I feel like this option is the only option, so we have to try our hardest. At the very least it gives mum something to look forward to and live for. But it needs to be the most coordinated and organised it can be to alleviate the stress from my mum.

5

OK my last (long!) reply didn’t work. here goes again…!

Thank you both for your replies. Yes we anticipate that this is going to be quite a feat and will need a lot of organisation, but in reality it has to happen. Mum isn’t able to look after her own home anymore and we are not prepared for her to go into a home. She’s only 56 years old.

Poll-On the OT, mum recently had a reassessment from her OT, do you think that one could just be transferred up here rather than having to move her then get her assessed again and in the meantime be without a number of things that she needs… Interesting point about the Community Matron, I will get onto my GP surgery and see what they have to say.

Alison, luckily we are in a position whereby we are able to afford a house for all of us, so we don’t need the sale of mums house to get a place for all of us. Hers will sell when it sells but the move isn’t dependent on that, so that removes one part of the equation. With mum having had MS my whole life, this situation has always been on my radar. My OH fully appreciates what this will entail but he’s for it because he knows how important mum is to me. I know what my brother has been dealing with and we are fully ready to take it on. Good point on the private care-in an ideal world the public care would be available from day 1, but knowing that is unlikely to be the case, private care would give a bit of a grace period while the rest of the system is catching up. The one thing that would need to be in place however would be a district nurse… We might be able to look into a short term residential option if necessary but so long as mum knows it’s only temporary. Ultimately, we don’t know how much longer mum has gont (we are realistic that it’s not going to be 10 years, even less) so if we have to put up with some awkwardness for that time, it’s fine by us. I will feel like we’ve done all we could at least.

One of our (many) stumbling blocks in unfortunately my mums mother. She is not behind these plans at all. She lives close by to my mum and offers her support and ‘care’ but she stresses my mum out like nothing else on earth and it’s not a good environment for mum to be left in. Mum is so unhappy with her ‘existance’ (yes, she’s on antidepressents), she is using the move as something to work towards, to live for. Therefore it HAS to happen. The question is making it as easy and painless (for her) as possible. We’ve done one move before (England to Wales) and while I was younger and not really involved with the ins and outs, it was made quite difficult by individuals on the Wales side. You can come across some really really efficient and excellent people working in social care, but they invariably have couterparts who are quite the opposite. It’s the luck of the draw as to who you get…

6

Great that you are making such good progress. I wish you all well.

Alison

7

no advice,but just wanted to say,your mum is so lucky to have such a caring daughter,and hope the move goes really well,and

who knows when your mum is not too stressed,she may even start to pick up,i really hope she does.

good luck to you all.

jaki xx

8

Hi again.

Anything happening yet?

Re the OT question…I think each area will have its own methods. But a chat with the current OT about the move and using OTs wherever you go to, cant go amiss, eh?

pollxx

9

Hiya,

Sorry, I went quiet because mum passed away. She was 56. My whole world has come crashing down. All our plans, hopes… gone. I’m angry at myself for not being proactive earlier, this could have happened a year ago but I just let life pass us by. I can’t help but think ‘what if’…

It seems that a lot of these threads tend to end in ‘they passed away’ and I was really REALLY hoping this wouldn’t be the case for us. I’m going to stick around the forums as I’d like to offer my support and experiences to others in the hope that they will help.

Thanks to all of you for your comments and help :slight_smile: I’ll see you around xx

10

hi, i was wondering just the other week if you had moved,so i am very,very sorry to hear that your mum has passed away

please dont beat yourself up, you were trying your very best to help her,and she will have known that too,and that will have given her great comfort,

i am the one with ms, and my family keep me going,especially my little 8 month old grandaughter,please keep in touch.

(((((((((((((hugs)))))))))))))

jaki xx

11

hello again.

Maybe you wont see this as you have no reason to visit this site anymore.

I am ever so sorry, but I didnt see your post about losing your dear mum. I am truly sorry for your loss. I know that is often said, but I am saying it in a sincere way hun.

How are you doing luvvie?

luv POllx