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How much of mum’s medical stuff should I have to worry about!

(25 Posts)
AhAgain Wed 21-Mar-18 22:18:35

Mum is in a private nursing home.

She has many complex health problems:
- non healing fractured neck vertebrae (6 months on - still in rigid neck cast)
- wet macular degeneration (bad)
- fibromyalgia
- some sort of ulcerated toe (could be diabetes related - still awaiting blood test results, two weeks on).
- breast cancer still in remission (3 weekly treatments).
- urinary incontinence.

Whenever I speak to her, I get all her health issues, how the GP don’t want listen abc the nurses are overstretched and aren’t around (so she doesn’t ask for help).

I am just so stressed. Every time I speak with her, I am stressed. I pass on everything to the nursing home, but the reply is that “yes they are busy, but never too busy and she must ask etc”. She is of sound mind.

The nursing home is a good one, although beginning to wonder (as I am not getting responses from them re certain issues).

I just think if she spent her time talking to the nurses, home manager and GP instead of me, that she could get things done. Also she completely ignores my (very sound advice).

I am really busy with work and family. Then every time I speak to my mum I end up stressed (increasingly so) and that probably overflows into family life 😭. Argh!

Advice? What should I be expecting if the nursing home (te taking some of the stress/weight off)? Anything else I can do to reduce my own stress levels?

AhAgain Wed 21-Mar-18 22:19:11

Sorry for all of the typos: stressed and trying to type on my phone.

thesandwich Wed 21-Mar-18 22:43:03

This is tough. My suggestion would be to document all these issues and request a formal meeting to discuss this possibly with gp/ senior care home person so you have awritten paper record and trail of issuesthat are recorded and reviewed. You can only do so much- but formalising and following up should help clarify things. 🌺for you and gin

AhAgain Wed 21-Mar-18 23:14:32

Thanks Thesandwich.

I do most communication via email (and follow up in person) - so there is a paper trail. Not so much with the GP: I am always working when he sees her.

What is reasonable to expect the home to manage? I think some (possibly quite a lot) of the problem is my mum not communicating with them (he wants and needs) and just offloading on to me instead...

And any suggestions on how to manage stress? I just find things are getting worse and worse... Getting a bit overwhelmed/depressed/worse (can’t see a way out).

Musicaltheatremum Wed 21-Mar-18 23:23:59

Many years ago your mum would have been in a long term care setting looked after by consultants in care of the elderly with a team of junior doctors tomlook after them. Now it has all just been passed to the GP (primary care) devices which are not properly funded to look after complex cases like your mum's.
I would have no objection as a GP to discussing your mum's care with you(with her permission) tomtry and alleviate your worries.

hatgirl Wed 21-Mar-18 23:27:53

The home needs to identify someone to speak to your mum about this. She should have a named worker who should be hr point of contact.

In the meantime perhaps for your own sanity you need to temporarily withdraw slightly.

In direct contradiction to that advice though can I just check that your mum has been screened for continuing healthcare funding? If she hasn't been recently/ever now might be an opportunity to request a review of that which will force some discussion of her health issues at the very least with the nursing staff at the home.

AhAgain Wed 21-Mar-18 23:44:20

Thanks Musical, I will contact her GP. I have done before. I think my mum feels neglected abd dismissed. Her body is giving up in her in every way and it is difficult to watch (although must be even more difficult for her...). She is in decline. She also won’t take advice.

I now see her twice a week and probably phone her another 3 times, but every time I end up stressed. There isn’t really anyone else. I am an only child and others (who had initially been fairly helpful when she had her very nasty fall in September) have mostly withdrawn now (naturally). I find it hard to withdraw much when she has no-one else and so many issues.

She receives the nursing benefit (although they haven’t started paying it yet), otherwise she is self funded (fees are £1650 a week - it was a short term measure, but I can’t see her returning to independent living... So I need to probably find somewhere else).

I am not sure that Mum has a named worker as such. Does that happen in every home? I haven’t been given one point of contact. I have been conversing mainly with the home manager and her deputy. I have also sokem to various nurses over the months, but since things don’t tend to get written down, I get worried about the lack of audit trail...

hatgirl Thu 22-Mar-18 17:56:14

Yes it's fairly standard for someone to have a named keyworker when they are in a care setting for all of the reasons you have identified.

I'm really quite concerned though that you aren't getting the nursing element funded 'yet'. That does need following up.

Particularly given the non healing neck fracture and the ridged cast, continence issues, skin breakdown etc in what was supposed to be a short term placement I would be clarifying with the nursing staff if they have completed a continuing healthcare checklist any time recently, or at all. If nothing else you need some proper planning taking place about her long term needs as you are both in limbo currently and a CHC checklist should prompt that.

pissedoffnurse101 Thu 22-Mar-18 18:00:33

With the wet AMD has she had injections?

pissedoffnurse101 Thu 22-Mar-18 18:03:15

There are several aids available if you’ve not got them already such as magnifying equipment for close work aswell as speciality optical appliance reading lights. These are a little pricey but the magnifiers usually can be loaned by a hospital

AhAgain Thu 22-Mar-18 22:20:51

Thanks both.

I might try and get Mum to look around another home on Saturday. I have had little response from her current home this week (I have been incredibly polite). See how this new home visit goes - will phone with questions tomorrow too. The key worker and CHC info is very helpful. Mum was assessed - for the nursing care element - about mid-Jan. I was told it was awarded on 19th Feb. As of mid-March, it hasn’t started to be received by the home yet.

Yes, Mum had the injections, but I think that she started them relatively late (she thought that the eyesight problems were cataracts and waited far to late) and they didn’t have a massive effect. A few delays in treatment (due to her injuries from the fall and a couple of other shorter term hospitalisations (one for pneumonia) didn’t help and the consultant recommended discontinuing them in early Feb.

Yes, probably yet another thing I should follow up - visual aids. I did a lot of that (well took blooming ages to convince her to see someone - that was allbefore her fall) and she got a magnifier, but that is too heavy apparently, so she reverts to a little cracked one. I should probably chase things.

hatgirl Thu 22-Mar-18 22:36:19

It may well be that the CHC checklist was completed at the time the nursing funding was agreed but if that's the case your mum (or you on her behalf) should have been asked to sign that you consented to the checklist taking place and you should have been involved in completing it.

I also suspect that your mum is still being classed as a short term/ temporary resident even though she has now been there some time which may be why she hasn't been offered a named worker at the home. Normal practice is that there would be one named worker (not necessarily a nurse, could be a senior care assistant) who is primarily responsible for updating care plans/information etc about that person.

£1650 a week is very much at the higher end of what nursing care costs. For that kind of money I would expect your mum either to have very complex needs (and therefore be potentially eligible for full NHS funding) or in receipt of a super delux service, which it doesn't sound like she is. So something isn't right here one way or another, and you are right to be querying what is going on.

Were social services involved at all in the nursing placement?

AhAgain Thu 22-Mar-18 23:21:06

I will look into it, thank you.

She is in a Bupa care home. She doesn’t have complex needs at all, it is a very nice care home. Originally it was only intended for a couple of months: after discharge from hospital (where she spent two months) and before moving into assisted living. However she started to get very anxious about moving again (into assisted living) and I pulled out of it - keeping her st the home. In addition to the anxiety, her health hasn’t been massively stable. She hasn’t been admitted to hospital since mid-January, but I don’t think her living alone (even with care coming in) would be great. I think she is thinking that way too. When I needed that original respite card there was VERY little choice in our area: two which felt really quite grim, one nice one which was expensive, but thought it was only for two months. That was a bit over 5 months ago. The hold probably is deluxe in certain ways, but she is not getting much help. To be fair she doesn’t need loads and goes to pains “not to be a nuisance” (well to the nurses...). So I think that the nurses don’t think she needs much. She does saves it all for me.

Bupa - privately funded. But they did help her get the “nursing award” (or whatever it is called). Not a lot, but every little helps.

No, didn’t use social services. Didn’t get much help with finding anything around the home of discharge from hospital: it was messy.

Needmoresleep Fri 23-Mar-18 10:36:11

hatgirl, are you sure? I recently had a look at an American owned home on the South Coast, who quoted £2,000 a week for mid stage dementia, ie DOLS but without other health needs. They would not quote me for the end stage dementia which is the point at which I will probably need to move my mother from the current mox of sheltered and carers dropping in. They were expensive, but I would expect others to be in a similar price bracket to what OP is paying to BUPA.

mumisaworry Fri 23-Mar-18 20:19:49

@AhAgain Very similar story to mine so holding hands across the WiFi!
Only child, mum presenting well to everyone else but laying all her worries on me. It's relentless.
Same too for waiting for the approval of nursing funds. Mine didn't trigger for CHC so having to self fund until money runs out...
I am stressed and exhausted, physically and emotionally.
Pouring a large glass of wine in a moment!

hatgirl Fri 23-Mar-18 22:41:18

needmoresleep but that's kind of my point, the OPs mum doesn't have any kind of dementia, or particularly complex needs on the face of it, she is therefore (I assume) standard nursing and not getting a particularly great service for that kind of money.

Obviously costs differ in different parts of the country but I have placed people in care homes at both ends of the UK and would say that the level of cost is definitely at very much the higher end of the scale.

I'm not sure what you mean in relation to 'DoLs but without other health needs'

A Deprivation of Liberty Safeguard is a a legal power/safeguard providing the checks and balances when care homes need to place certain restrictions on people who don't have capacity to manage risks themselves. This could be as straightforward as having a key pad/code to open the care home doors to ensure confused residents aren't able to wander. It shouldn't have any cost implication to the person in relation to their care funding?

mumisaworry Sat 24-Mar-18 00:19:43

@hatgirl re the DoLS - you're right, the Care Home Mum has gone into are applying for the DoLS so they can keep her safe ie not giving her the key code when she says "let me out, I'm going home!" Without it, they can't keep her 'contained' in their four walls. I'm quite happy to sign as I know it's for her own good!

Needmoresleep Sat 24-Mar-18 15:50:42

What I mean is that DM has little short term memory so no orientation. At the moment she is still just OK, as in can find herself to lunch and the coffee lounge, dress herself, make repetitive conversation and so , but needs help doing quite basic things like change TV channels, laundry, turning the shower on. And only very rarely, like once a year, would wander off.

If she wanders more, the sheltered housing will say that she is no longer safe in their setting. I will need to move her.

But apart from her memory she has no obvious health problems. Good blood pressure, reasonable hearing and sight, no arthritis etc. She probably only sees the GP once or twice a year, and that is because we try to jump on potential problems quickly because of her inability to comply with advice.

That home would still have been £2000 a week. It was horrid, with very pushy marketing people.

(Though a similar one we used for convalescent care a few years back and a not dissimilar price, was lovely, with good post operative care. A lifesaver for all of us.)

AhAgain Sat 24-Mar-18 23:26:18

Fun today.

Don’t know is mentioned up thread, but Mum has had a VERY painful toe: has been seeing the home GP once a week (a one week course of antibiotics about 3 weeks ago, but he saw no need for further antibiotics, despite my request), has been seeing the home chiropodist (every 3/4 weeks), one of the nurses looked at it yesterday and said that nothing really looked wrong with it. Took Mum to a Chiropodist in town today - she was horrified: foot is hot to touch, red, swollen (one toe about twice the size), not to mention the pain. She treated the abscess on the corn, drained the under the surface infection, but said that there was definitely deeper infection, that she couldn’t get at (which neeeded antibiotics). She is going to write a letter to the GP and have liked two follow on appointments with her (weds and sat).

I am fuming: feel that she is being neglected by the GP and home. Have spoken to the on duty nurse tonight (who is also not impressed -going to try and get her antibiotics from on call GP tonight). I am going to talk to home manager on Monday (trying to get them to sort this out - with transport and escorts for these follow on appointments - I feel we shouldn’t be on this state , if she had been properly taken care of).

For this area (South West) it seems to be £1000 to £1250 for a good nursing home for “standard” nursing (non-dementia, not very complex). So we are paying over the odds. It is a lovely home (physically), but obviously problems with the caring...

On the way back to the home, Mum told me about her suspected UTI - “I haven’t told anyone, thought I would tell you first”. I did tell her it was important that she told the nurses - as they are the ones that can do something.

Also took Mum to look at another home today: she didn’t like it. I can only think of one more in the area (within 45/60 minutesdrive of my home and work) which she might possibly like (good care, reasonable sized rooms, en-suite and not shabby). We really don’t have much choice here and I am VERY reluctant to have her more than 30 minutes drive. sad

mumisaworry Sat 24-Mar-18 23:32:36

@AhAgain How would she react to a move? This is one of my worries, trying to work out best way of settling Mum and not moving her (yet) again.

AhAgain Sat 24-Mar-18 23:43:58

She is behind a move - not happy with the care she is getting (well not getting), but it may be partly “the grass is always greener” and, as I have mentioned before, she doesn’t tend to stick up for herself (ie not wanting to be a nuisance or ask for help - when she is capable asking for it... I think they know she is capable for asking, so if she doesn’t, they don’t worry about her too much). So will we find somewhere “better”?

As mentioned above, she has certain expectations about things - good sized room, en-suite, not shabby, not institionalised...). I have toured quite a lot of the care homes in the area and actually those are a rarity... The place she is in now, the place I took her to today, one other, plus two that look nice but have bad CQC ratings (both “need improvement”). Everywhere else seems pretty “grim”.

I don’t know if she would be happy if she moved. Whether she would be more unhappy, I don’t know. There is always a compromise. Would save £500 a week if she moved.

mumisaworry Thu 05-Apr-18 21:41:36

How's things @AhAgain ?

My mum is now in a Care Home. Tells me she hates it and everyone in it but staff say she is a delight, has settled well and has made some friends!

My issue now is whether she actually needs to be in a residential setting. Some days she is very lucid, appears almost back to normal - physically & mentally. I then tie myself up in knots thinking perhaps supported/sheltered accommodation would be better. Then I visit again, and she is confused and disorientated. I am in such a quandary. I want what's best for both of us and if she doesn't really need (and doesn't want) a Care Home, i need to find something else - at a much less cost!! Her savings will run out in a year so I might not then have an option.

Urgh. Keeping me awake all night most nights, all scenarios going round and round and round...

AhAgain Thu 05-Apr-18 22:55:39

Hi mumisaworry, you poor thing - that sounds very stressful. It is very very very hard: it feels like an awful lot of rssponsibility.

My mum has been reasonably healthy. She is coherent (no dinebtia), but does get confused/odd if unwell or on antibiotics.

Her health is up and down and her eye-sight progressively worse. If her eyesight was ok, I MIGHT have been more tempted to go back down the route of assisted living. But - with health ups and downs and falling eyesight....

I took her to see another nursing home a couple of weeks ago. They have 3 floors: care, nursing and dimentia. I had been thinking “maybe she could go into the care floor and - if things deteriorate - into the nursing floor”. But interestingly she was VERY dismissive of the care floor: “the nurse is only on call, not on the floor all night f the time!”. If she isn’t inclined towards a care floor, then I really can’t see assisted living...

Anyway - despite it being physically a very nice home - she didn’t like it. Will try to take her to another one on Saturday. We really don’t have a lot of options around here to be honest: I am really really struggling to find something that she would like.

I have to admit that part of keeping her in a nursing home is for my benefit: she wouldn’t cope in assisted living without a LOT of assistance from me (even with care coming in) and I just don’t think I could cope. Her health is too up and down, she has many chronic issues, she is pretty anxious (about health on top of that): trying to juggle all the health stuff and run a home for her would be impossible (she wouldn’t want to “impose” on brought in help confused

mumisaworry Fri 06-Apr-18 00:01:22

I understand that totally @AhAgain - it would be better for me if mine stayed in the home. If she did go to supported living, I know I would be running around after her, sorting carers, shopping, phone calls, money stuff and then coping with the physical weaknesses and dementia and all the health stuff that goes with it. I get so overwhelmed by it all.

I hope this weekend's viewing for you is positive - fingers crossed!

AhAgain Fri 06-Apr-18 00:15:47

@mumisaworry - I totally understand. flowers

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