MIL going downhill fast. What else can we try?

[PauliString]

(DH and I have Covid and aren’t at our brightest right now.)

MIL is late 80s and lives alone. Until a month ago she was denying any need for help. Actually, she wasn’t going out at all and DH and BIL were alternating weekends to buy food and clean for her.

She has obvious growing memory problems and confusion. She’s on a long waiting list for memory clinic, another for thyroid, a waiting list for social care needs assessment and OT(?) and yet another for cancer referral.

We finally got some carers to start last week doing two visits a day (despite her). But she’s got so much worse this week, falling and spending all night on the floor, doubly incontinent, can’t now get in or out of bed herself. Social services say not their job to be an emergency service. GP said call 111. BIL called 111 who sent an ambulance who said she wasn’t bad enough for hospital. Care agency overstretched. We’re hours away (and ill).

She hasn’t had any medical assessment of the rapid deterioration. We’re told it could be months. But she can’t feed herself, keep clean, get to the loo, get dressed, answer the phone or pull her own pants on. Who/what do we try next?

Forgive me if you've already tried (I wasn't sure as you mention social services and the care agency but not council) but her local council should do urgent care assessments - that would be my first port of call. I know you've said she's on a waiting list but I would call them and stress that it's now urgent, and that she has nobody locally that can help her and that it's now a safeguarding issue.

Age UK have a helpline you can call for advice about this kind of thing, too - 0800 678 1602.

It might also be worth calling local care homes for temporary spaces, if you think that might be required until she can be properly assessed.

Good luck - it's horrible and stressful when you're far away and you need help quickly.

Thanks, I’ll get DH or BIL to try again. I’m honestly not sure now whether they tried social services or council. I do know they were told ‘we aren’t an emergency service’ and that it would take months.

I looked up safeguarding last night and it seemed to be for when your carer is abusing/neglecting you, not when you don’t really have a carer to do the neglecting. I think we need to know the right words to use.

Fuzzy brain isn’t helping. And BIL says MIL now Covid-positive too. Will have to ask if care home can take her with it.

Financial POA apparently exists somewhere but not registered/whatever the next step is. Probably don’t have medical POA.

another for thyroid What does this mean? Deterioration of thyroid function is assessed by a simple blood test, and tablets if necessary prescribed for GP. There shouldn’t be a waiting list.

Id go back to GP regarding rapid deterioration. Make it clear you’re not asking about a fall.

And another go at SS with words like safeguarding.

Document everything with dates and times. “She’s had a couple of falls this week” won’t be as convincing as “Friday 4th November fully ambulant, bus to chiropdist, Monday 7 sept, fell overnight, discovered 10am by carer having soiled herself, Tuesday, continuing to be incontinent of faeces and urine (this has never happened before), Weds 9th, fell 12.15 am ….” Etc.

Ask your GP to refer to Community Urgent Assessment team, (urgently), in my PILs area this is part of district nursing team. Someone should come round in a day or two, size up the situation and refer to social services, red cross etc. Make sure you are there for the visit, though, or the EP may just tell them to go away because they are fine!

Three weeks ago she would definitely have told them to go away! ‘Oh no, I’m fine, I drive to the shops and do my own cooking’ is what she told the GP in front of DH (hadn’t actually shopped since pre-pandemic). She still might tell them she’s fine but more likely to look blankly at them.

Thanks, I’ll pass this on to BIL as he’s there (despairing of ever getting home or to work).

GP should do a screen for causes of current deterioration - chest infection, urine infection. They should be able to give you contact details of social services for her long term care needs - it is likely that she will need long term care as it doesn’t sound like she is coping well on her own even with family support and carers. This may not be done immediately but it would be positive to start the process moving. If she does deteriorate further, call the gp again to reassess the situation (they may say call the ambulance again - which may be valid if the situation has changed from before). I’m sorry you are going through this.

agree with @NotMeNoNo - make sure you or DH or BIL is present for any assessments.

Do NOT feel bad about calling the GP again or other medical services, even if you have done previously. Unfortunately the health service is stretched and you often have to PUSH to get the assessments and services that should happen in the 1st place. It is evident that there has been a change and she is struggling - so they need to investigate and put in place support (what she has now is not adequate because her needs are too high).

Yes, urine infection keeps occurring to me. DH says she had bloods taken but not urine (thyroid is way out of whack but she’d been random with her meds for it). Or maybe Covid is part of this week’s problem.

She really needs so much help.

Sorry, I wasn’t clear about thyroid. She’s already on long term medication and is supposed to have bloods taken again once we can be sure that she’s been regularly taking her pills for it.

We don’t know when she fell, and she didn’t remember, but she’d been on the floor overnight.

I'm surprised the paramedics didn't take her to Hospital. Did they say it wasn't necessary or did she refuse to go?

I don’t know exactly as I wasn’t there; it was my very mild and polite BIL, who is not the type to insist. He said the paramedics ‘hadn’t thought it was the best plan for her’ which could mean anything.

Appt booked with GP tomorrow, hoping BIL doesn’t also come down with Covid meanwhile.

It might be worth writing down everything that's concerning you and emailing it to the GP before the visit tomorrow or at least see if DBIL is willing to show an email or a list to the GP?

Yes, I’ll do that.

DH is worried that they aren’t on the same page, with BIL in favour of soldiering on and making sure MIL isn’t offended by hearing him say how bad things have got. But the situation already wasn’t working.

I think I’d be looking at care homes at this point. She might not need hospital yet (which is good as they’re dreadful places for the elderly) but she’s clearly not safe home alone.

You buy in a private care company whilst trying to get an assessment
Might be up to £6000 a month depending on her need.

Yes, already paying for some care that had just started last week. That company can’t do any extra visits, so it’s back to the phones to see who can.

We’ve been through this a different way with my own mum (who was mentally with it but broke a hip). She couldn’t be discharged home without care in place, which is a bit different. In the end, home care wasn’t enough even if/when they turned up, so she’s in a (lovely) nursing home at not far off that price. That’s 250 miles away or I’d ring them!

If this deterioration is sudden then definitely GP review. A lot of elderly can become acutely confused/ incontinent with infection

Do check for urine infection can send them really crazy. My 97 year old Mother had one in February she rapidly deteriorated soiling the bed and wetting. She went with me by ambulance to, hospital she wasn’t really aware of what was happening just kept on shouting that she felt sick. It was a urine infection boardering on sepsis. She had a few days in hospital but then came home. This was very unusual for her.

Sounds very familiar, honestly.

why dont you try the carehome your mum is in?no reason why your MIL count go there, would the distance be a problem for you?

I hope we can find somewhere nearer than the other end of the country, but I suppose we could do two mums with one visit that way!

Seriously, they would take her with a current Covid infection and without a care needs assessment. Not sure how well she’d travel at the moment anyway (it’s a good five or six hours).

My Mother was sent home with a 6 week care package of 4 visits a day. She didn’t like it said it was an invasion of her civil liberties and I could do it. My brother and I live with her. We did stick with the six weeks though it was easier when it was twice a day as you were always looking at the clock.

You could always ask their advice. Tell them the problems and see what they say

Wouldn’t take her, I mean.

There should be a rapid response/urgent care team for her area. Just google it. They should be able to help.