Cockroach cafe - Spring in autumn

[GnomeDePlume]

A new thread for those of us dealing with elderly family members. All welcome.

A place to rant, discuss, vent, decompress. No judgement just solidarity.

@GnomeDePlume look after yourself it sounds so difficult and sad

@countrygirl99 thank you for the warning. It was the CH nurse who spotted the tell tale ammonia breath. His opinion is that DM has maybe a couple of weeks.

@GnomeDePlume I am glad that the EOL pack is finally prescribed and that the CH staff are there for your DM and your family. Hoping that the transition for your DM is as peaceful as possible 🙏 Take care of yourself during this time, remember that there is no right or wrong way for you to be, you don't have to be there at the CH the whole time or even rush to be there at the end if you are too exhausted. Make sure you are eating, drinking and getting outside into nature.

@GnomeDePlume sympathies to you too 💐

Thank you for sharing your practicalities here - I’m often grateful to be aware of what I may need to know/do at a time when there is a lot to cope with.

A short while ago I was asked by nursing home about funeral directors and preference for burial or cremation (to make it easier for the death certificate) as they routinely note these. They asked the question very sensitively.

@GnomeDePlume Sympathies. Hopefully this last stage will be calm and painless- it's good that you've been able to keep her in the CH instead of a hospital. Remember to allow yourself time and space to feel whatever you feel about this. Your earlier comment about feeling like a fraud reminded me of things DH said when FIL passed after years of decline. I think he felt that taking time off work/being upset etc would somehow seem fake and disrespectful to others who had lost family members more suddenly as it was fully expected and almost all the 'admin'/funeral planning stuff had been sorted long ago. I think you still need time to process things with this sort of passing- there are just different things to process. I know DH and MIL felt oddly lost for a while without all the care home visits and care discussions.

Thanks for the link to this new thread x
So, my mum is still in hospital but other than pain relief they don't seem to a) know what the problem is b) be offering any surgical or treatment options and c) seem to be confused as to her complex medical history.
I have no issue with her not being a candidate for surgery - She's 80, very frail and medically complex - but there just doesn't seem to be any plan.
She was admitted for sky high infection markers (sepsis) and severe pain.
She deteriorated a lot in 2 weeks.
She's on morphine, IV strong ABx and now pregablin.
She's not eating much, but is now managing to walk to the toilet in the ward bay with a zimmer.
I've told my siblings that I'm not able to offer the level of support she will need going forward...no response as yet 🙄
I think she needs a rehab stay to get stronger and get OT/physio input.
Although the physios are stumped as there's no definite dx...
Any advice?
I'm so tired...

@Raven08 it is so hard when there isnt a singular diagnosis. IME medicine is very siloed meaning that the only thing being actively treated is the acute problem. Everything else gets pushed onto the back burner and possibly gets neglected. These other issues may in fact be contributors.

Has there been a multidisciplinary review of your DM's case?

I saw this problem with my DM, went into hospital with a broken hip. Many, many problems followed, mainly the result of DM not being treated holistically.

The drs I've seen have been very nice, and they have requested input from vascular, neurology and orthopaedics but the referrals have been refused 🤷‍♀️
She has a 24 hour heart monitor on today.
They have also taken more blood cultures as the strong antibiotic she is on may not be right for whatever infection/bacteria it is.
Her infection markers aren't coming down as much as they'd like.

Oh, and the physios have requested photos of her flat which means they are planning on discharge home 🤬
I requested she be discussed at MDT but 🤷‍♀️

@GnomeDePlume
I'm sorry to hear about your mum x

@Raven08 sounds like she won't be going home until her infection markers improve, the doctors sound like they are still trying to identify the source of the infection and get it under control.

They always start planning ahead of time for discharge especially if they think a person might need more support/be less independent going forward. That is actually good practice and avoids a rushed, unsafe discharge. The physios will be looking at her home environment to see if it is safe and suitable given her current mobility, they work with the OT's to get equipment and adaptations in place before discharge. Many people recover better at home in a familiar environment with support, it is not always a negative. Be clear with the discharge team that you cannot provide any family care support so they don't try to discharge home without care in place if that is what she now needs.

In my DF's case when he went in a year ago (previously had no care in place) they did a diary of care on the ward to look at what he could manage independently/what support he needed before discharge. You can ask the ward staff to complete one. They then sent the discharge to assess team (carers, physio, OT) to his house for two weeks 3 X a day to see how he managed at home. He clearly wasn't able to manage independently and wasn't becoming more independent as he recovered. We then got carers in place longer term following their assessment. The OT also ordered some equipment for his home to help, some before discharge, some after they saw what he needed.

Physios might also offer community rehab locally or offer home visits for a period of time, it all depends on your area and what she needs. My niece has home physio rehab visits due to her mobility issues. Ask the physios what support will be in place for rehab after discharge.

Also see if the hospital has a Frailty Team (FEAT) who review complex cases like your DM's, they are sometimes called elderly medicine or some other name. They tend to look more holistically at the whole picture. My DF saw them before his recent discharge and they were very thorough looking at all his medical conditions and the impact on him, the pharmacist reviewed all his medication, physio assessed his mobility and the OT discussed his care needs with me.

@Raven08 the hospital DM was in started talking about discharge 2 weeks after DM had surgery on her broken hip.

What I came to realise was that there was some sort of hospital KPI which said that a patient had to be discharged or moved on after two weeks. DM slowly rotated round the hospital wards, never spending longer than a couple of weeks in each. Ultimately she stayed in hospital for 3 months and was eventually discharged to a care home.

@Raven08 my DF was in rehab for 3 months last year, the OT team did start discharge planning fairly early with photos pf the house followed by a visit and we were concerned they were going to send him home (which would have meant being confined to one tiny room as he is bed/wheelchair bound and their house has steps everywhere) but they readily agreed it was not possible which allowed us to get on with planning for a discharge to care home.

@GnomeDePlume sorry you are at this stage now. My DH has recently acted as NOK for his best friend who died in a care home (no family). DH had pre-arranged the funeral director and both he and the care home were glad he had done so as the end came in the middle of the night at a weekend and it made everything easier.

@ElderlyDilemmas thank you. It is something I need to talk with DB about. I'm not sure if he is aware that there wont be time to sit about once death is certified.

I worry that he will see me as 'jumping the gun' if I mention it now. I'm the practical, pragmatic one in the family.

The local funeral directors all have 24 hour phone numbers so I have them in my phone.

Just home.
So...
Mums infection markers are raising.
The drs don't know why.
She's bedn on cery strong abx for 9 days so 🤷‍♀️
They are referring to haematology.
Spinal have - as I assumed - said "nope".
She seemed quite perky today and asked for some biscuits.
It's so odd. All her x rays scans are ok.

@GnomeDePlume this is what finally pushed my DM off her perch - kidneys went and she lasted a couple of weeks after that.
They eventually got Palliative Care in, who were great, and said they'd see about maybe getting her home once the weekend was over... But her partner overheard a conversation outside her room where it was said that "she" (probably DM) might not last the weekend. And they weren't wrong, she went the next day. Your CH's guess will be as good as any.
It wasn't too bad, she didn't seem to be in pain.

I went to funeral companies' websites (they publish prices online) and had asked three of them for quotes before she died. And checked out a "green burial" place she'd expressed interest in (it didn't impress but we didn't tell her). But I knew she wouldn't mind - she was always very organized about death.

Anyway, you don't have to tell your DB how you managed to be so very efficient re funeral arrangements etc. Just remember to change the date on it, if you forward him an email quote that you told him you'd got later than you had ...

It seems getting a death certificate takes a while these days because you have to wait for the medical certificate from the doctor to come through, before you're allowed to book a registrar appointment. And they can go like hot cakes, so the moment you hear, book.
Don't be me and getting up at dawn because the only appointment left was the first one in the day. I had waited all of a few hours to book(!).

Hope this is not too grimly pragmatic. It's a very odd time when you hear someone's time is finally being called, but they're still there. Time seems to be both very slow and very fast.

MIL is in a different ward now with her own room presumably because of the positive covid test. The care here is much better but MIL is back to her usual self and refusing food whenever she can. She's wearing her own clothes today and they are hanging off her.

We gave up on the useless care packages being offered on discharge and have organised a two week stay in the same care home that FIL is in. They can take her on tuesday once her isolation period is over with.

@StillNiceCardigan well done - I’m sure making those arrangements was far less straightforward than they sound. I hope the stay works out brilliantly and leads to better all around.

When i told the nurse in charge yesterday that we'd organised a private respite stay she whipped out a discharge card and had it filled in and up on the notice board in seconds!

Visited MIL today and she didnt want to sit in her chair, didnt want to eat and didnt want to drink water she just wanted to stay in bed and doze. She doesnt really have any will to get back to get back to being independent.

She will probably need more than 2 weeks in the care home but we'll deal with that another day.

@MysterOfwomanY thank you for the heads up about registration time. You are right about time going both fast and slow.

Visited DM today, the ammonia breath smell is getting more noticeable. Also starting to look a bit yellow. Absolutely no idea who I was. Comfortable enough which is good.

@GnomeDePlume comfortable enough is what you hope for isn't it. Look after yourself.

@GnomeDePlume
Thinking of you

I've caught a lurgy from the hospital 😷
Bluergh

@Raven08 I hope you feel better soon. 💐