DSis and Basic Care Help

[Raindrops81]

Not sure which section was best (relationships/mental health/carers) so thought I'd try here first.

DSis is in her thirties, disabled (blind) and married to a man in his sixties (also blind).

They've recently relocated from
SE to NW England and they have a hoard of items, boxes and boxes stacked everywhere. He had stuff in storage and hoarding was already a problem so it's instantly escalated even more as they are now all in one (small) property. Probably part MH but also practical, due to not being able to see where things are and buying more stuff. I've spent 4hrs there today with my toddler (sjngle parent) but barely made a difference.

However my main concern is basic care. There was a box left in the bath/shower so they've not showered since Friday. They couldn't locate clean clothes. Can't use the washing machine so I don't know how many days they've been wearing the same clothes for. Food spilled down clothes they are wearing so assume they are only wearing one outfit each. Suspicious brown mark in bed sheet. They don't seem to comment about needing help with this, so I don't think they realise it's an issue. I haven't commented much on it yet, it's a sensitive issue.

I thought they had carers where they used to live but when I asked they said they don't use them because they have too much capital to qualify for funded care and they don't want to spend their money on it. I've no idea how much they have got. I've considered funding something myself but reluctant to if they have thousands in the bank.

I think they absolutely need weekly care to help with things like washing, throwing out out of date food (I threw away Easter eggs that BBE date was 2014). But I don't think they recognise this. If they don't want help is that it? Nothing I can do? How poorly do people have to live before there is any intervention?

I also need help with the decluttering. They need a skip but they don't have a drive that can take one. Plus I would never get it all done in two weeks as I live over an hour away and single parent to a toddler so it's impossible. They are open to getting rid of stuff which is a positive at least, but it's so time consuming.

There isn't enough friends and family that can help (long history but DSis has burned a lot of bridges). I feel like it's only me that can make any difference.

I'm at a complete loss at what I can do or where to start.

Hoping someone can help me break this down!

Do you think they could be encouraged to get a cleaner in once or twice a week? You'd probably need to organise and reference them, though some care agencies will send a DBS checked cleaner who does no personal care.

There are also professional decluttering services which could be used one off.

Are there any local charities for the blind who might be able to advise, or even offer any services (even if it was something as simple as a befriending service). How's their navigation since they moved? I have a feeling Guide Dogs might do mobility training even for those not getting a guide dog, though I'm not certain.

Has anyone spoken to local Social Services? I've found with difficult relatives that instructions and ideas are accepted much more readily when they come from a non family member.

If they have capacity, however, and refuse help there's not a lot than can be done.

PS re the skip, have a look at Hippo Bags, though I don't know how the cost compares

I forgot to say they do have a cleaner, one hour a week, but because of all the boxes and clutter they actually can't do much at the moment. A bit of hoovering, changing bedding every other week. I guess (hope!) they clean bathrooms too.

DSis emailed me this morning, thanking me for the help and it's already made a difference. So hoping they are starting to see the benefit of getting rid of stuff. I've replied and given some options on how they might want to continue as it will take months or years for me to do it alone.

I found a hoarders charity that I will call for advice. Not sure if they fund any professional declutterers but hoping they can point me in the right direction on how to manage this. Blind charities is a good idea as they may have access to volunteers or funding help for the carer side.

Maybe if we can get the decluttering sorted then the basic self care will be easier?

I suspect her DH thinks he's more independent than he actually is, DSis is very dependent on him. But he's not helping her by refusing help.

I was in tears this morning. It's just so upsetting it's got like this.

It's good they have a cleaner - think of it as being a bit of a gateway drug! Do you think her hours could be increased? I couldn't clean a whole home in an hour even if it wasn't cluttered!

I also don't know how good the cleaner is - one elderly relative has two - one that has come in for so long that she's a family friend and spends as much time chatting to the relative as she does cleaning (this is good for the relative!) and a second care agency cleaner who does some of the more hardcore cleaning.

I imagine that the moment self care is harder if they're constantly having to dodge different items; I don't know if they have residual sight but I'd be worried about trip hazards.

If it is a clinical case of hoarding, my limited understanding is that it's more about the emotions behind it than the items themselves. If it is clinical hoarding then you'd be looking at counselling first as simply decluttering won't last long. My DM has a flat that's small and overfilled but I don't think she's a clinical hoarder if you see what I mean. It's really good that your DSis has been so positive about the decluttering; do you know if her DH feels the same way?

I wonder if there's an audio book version of Marie Kondo that you could both listen to and structure any joint decluttering that way?

You have my sympathies - caring for relatives is hard, and I think anyone who does it has been in tears at some point or another.

If they have too much money they must have more than £23,250 each or a good income. Do you think this is the case? It’s 14,250 each that you’re allowed to keep.
Do they claim attendance allowance? Maybe that money could be used towards help if not?
The home must be a fire risk now, the fire service fit alarms etc if they don’t already have but they will also put a safeguarding in to adult social services.
What is the GP doing regarding mental health/hoarding? Can they see about getting an enabler?
Can you contact the sensory team in the adult social services department as you think they are buying things again as they can’t find belongings?
You would need their consent to contact social services can you see if you can get that? If not you can do a safeguarding referral or just log that you are concerned although where I am it wouldn’t start the bell rolling unless we had evidence from lots of places (hence beat to get consent)

@AvocadosBeforeMortgages
Sorry in advance this may be lengthy!

At the moment I think they would be resistant to increasing cleaners hours - they don't seem to want to spend money on any basic care stuff. I don't think they recognise there is a problem as such yet. They think the problem is the house isn't big enough and they need a garage. But they moved out of a one bed flat to a two bed house, and took his stuff out of storage, so instantly a bigger house has given them no extra space. In fact it's worse at the moment because of the safety issue with stacked boxes. I think if they had a bigger house they would just accumulate even more stuff.

I could definitely imagine them spending a lot of time chatting with the cleaner! I had this problem when I was there to help, especially her DH who likes to talk. I do worry about them being taken advantage of, but at the same time even I would find it hard to clean because you've got to move so much stuff first and I don't think that should be the job of the cleaner.

Both were born with zero vision and no light perception. Trip hazard is definitely a concern and I'm also concerned about boxes falling on them if they bump into them.

DSis seems open to change at the moment but deep down I think there is still a clinical case, because they become resistant and have excuses. In one conversation they say there is no point keeping all their CDs (probably well over 1000) because they use Amazon music through Alexa, then when I find two CDs later on they want to keep them in case amazon music doesn't have that particular version.

I do see just decluttering won't help if there is a clinical problem. But when you don't have the clinical problem it seems to be the most logical solution! My folks don't have much of a relationship with DSis and have complained about all the past effort they have put in to help and then the home getting in a mess again. So hard as it is I think I need to pause on helping with that for now.

The marie kondo audio book is a good shout although I don't know if this is addresses clinical needs (I've not read the book myself yet). But maybe there are other books suitable.

@MyPatronusIsABadger

I'm not sure what there finances are like. I know DSis gets PIP, is that means tested?
Her DH gets pension related payments, not sure if any of it is private pension.
Is the £23k each the threshold for having funded help with carers ? My sister definitely didn't have that amount of income/savings before meeting her DH but I don't know what his finances were/are like.

They won't have asked a GP about the hoarding, I still don't think they recognise the issue. The problem is external ... they need more space or people to help them unpack boxes etc.

I'll have a think about social services. It doesn't help they've just moved to an entirely new area so aren't known to them yet. Although he lived there years ago so he might be.

I've found the charity hoarding disorders UK and ive left them a message to call me. I think this might be a good first step in what will be the best place to start. Even better if they can fund some support as I think my DSis and her DH would be open to free help initially. No idea if they would take on board what they say though but we'll see.

Just came across this very lengthy but useful document about hoarding. Thought I'd post incase anyone else reading would find it useful. Only read first few pages so far.

hoardingdisordersuk.org/wp/wp-content/uploads/2019/03/A-Psychological-Perspective-on-Hoarding-–-DCP-Good-Practice-Guidelines.pdf

The fire brigade have a service to help people get their home safer. Contact the local council for adult services and local fire station. They provide smoke alarms too.

@Raindrops81

docsend.com/view/3vajycu

That might be helpful to go thru verbally with them and you could make the assessment on what the place looks like using the scale

www.challengingdisorganization.org/assets/docs/C-HS/ICD%20Full%20C-HS-10.18.pdf

Will give you a chance to do a rough assessment as to what level they are at - FWIW I am a hoarder in recovery, 3 years ago I was in the RED now I am in the Green, it been a long slow process.

I have 2 support workers who come to me weekly and they get the stuff out of the house asap, I get a list of stuff to complete for the following week.

They are employed by a charity but their funding is provided by the local housing office to ensure that I have a hope of maintaining my tenancy and have a safe place to live.

I have been in the past to the post where sectioning for my mental health was discussed as I was living in such squalor but ended up doing an industrial clearance of the house, without the mental health side addressed within a couple of years it was far worse.

Almost 3 years ago, I engaged with these support workers with the aim of getting this under control, they provide support, chat and physically sorting stuff as we carry on.

I have addressed informally the reasons why thru discussions with them for hoarding, MH team has been a chocolate teapot in that regard.

If you look at the clutter picture scores I was at 9, now I am at worst a 2. It was my physical health decline which made things a hell of a lot worse added by a manic episode and a need to hold onto things.

The manager of the support service apparently thought I was paying lip service to them and that I wasnt actually going to engage and they would be signing me off their books within 3 months (she didn't say it to me). She has eaten her words, I engaged fully and was signed off at almost 2 years with a lot of progress.

I was taken back on after an agreed period and I had made more progress. I still have a bit to go and then its the maintenance period, where they will check in monthly for 3 years to ensure I am maintaining.

For an example of the scales -
sites.southglos.gov.uk/safeguarding/wp-content/uploads/sites/221/2015/05/Clutter-image-rating-scale.pdf

I've addressed my root cause and its taken time to get back from that point, I still have a way to go but I am going in the right direction.

Yes to the fire service, community safety officer in the local council, they have done fire checks for me and provided extra smoke alarms, co2 alarms and other stuff.

Like your DSis op my problem started out as a mental one, then my physical health spiralled downhill, I wasnt coping and buying more stuff "to help" but then couldn't find it in the middle of things so was rebuying.

I wasnt physically able to move stuff and go thru it on my own, that's what the 2 support workers did they physically put stuff in front of me to make a decision on.

Keep, bin, donate, recycle - the bin and recycle stuff went off to the local dump before our weekly session was over so that it didn't clog up my bins altogether as it would have. The recycling went away in that car run as well in bags which then was emptied at the tip into appropriate sections.

The donate piles went flying out the door and to x charity the next morning. I now have several thank you cards from that charity (the feel-good factor) as they were v appreciative of the stuff and several items were almost fought after in their shops but some lucky person basically went in and found their wedding (top table arrangement, small arrangements, posies, bouquets, buttonholes, bridesmaids dresses, shoes, headpieces, page boy suits) as the originally intended wearers have now grown and not an option to use - (my wedding is on hold indefinitely due to circumstances we both find ourselves in but we are still together although live apart)

Best of luck