How on earth do you manage getting help in place and stay sane .......

[Badger1970]

Dad's 82, lived independently well until recently, and is a type 2 insulin dependent diabetic as well as having rheumatoid arthritis. There's been some memory decline but nothing that rang alarm bells. This all changed when Dad caught Covid 4 weeks ago. He was dreadfully unwell for a week, with a high temperature, delerium and only just managed to avoid hospital. Since then, he's slowly improving but the confusion is lingering. I got him to his GP on Tuesday, after expressing concern that Dad wasn't able to administer his insulin/check his blood sugars. They assurred me that some degree of "brain fog" was common after Covid, and that with family support, Dad would recover well I didn't feel entirely confident with this, and managed to get a second appointment with the diabetic nurse the next day. She said that Dad probably doesn't need insulin at 82, so just drop the daily injections (x3 a day of Novarapid) and just get Dad to use a higher level of Lantus overnight. His blood sugar was 17 when we tested it. They just aren't taking on board that Dad can't operate his blood checking unit, let alone inject insulin at the right dose. He tried to dose into his wrist last night.............
So I've spent most of today on the phone to SS Adult Helpdesk and they've assigned me a social worker for Dad. They were incredibly concerned about his insulin and told me to push the GP for the district nurses to take over while Dad can't; and that he's a risk to himself with it. They've been fab and are sorting out a temporary care package (my poor sister has been going 4 times a day while I take over at weekends. It's killing us both.........)
So I rang the diabetic nurse back, she was horrified that her colleague yesterday told Dad to stop using his daily and has now booked me a phone call with Dad's GP tomorrow to talk about the district nursing team as she can't refer.
How the bloody hell do you deal with all of this and not go mad......... I've literally spent about 3 hours on the phone today dealing with all of this and I'm barely any further forward. And on top, Dad's all huffy about having meals on wheels and potentially one care visit a day to make sure he's taken his tablets and had breakfast/is dressed etc. I'm heartbroken that it feels we've suddenly hit the slippery slope and can't see how on earth Dad's going to improve from his.

Many sympathies. This might just be a step change, not necessarily a slippery slope.
sounds like you have been able to access support( with a massive effort) but this should help. You and your sister deserve medals. Hang on in there and be very clear what you and your sister will do- step back from the caring.

It's so hard. I've had to turn down a job and I get up at 3am to go in and empty catheters, give pain relief. Luckily I can walk there but I feel like it's back to the baby days of sleeping in snatches of 2/3 hours at a time. District nurses have been useless, lied to us, denied they are able to make assessments for other services and suddenly change their tune when things have been queried by other services including the GP. Paul Satori have been our only support. They say you can judge a society by how well they treat their poor and sick. Our society is falling.

I naively had this faith that the system was still working in places. I'm so sorry that others are struggling too.

Dad is too "well" to go into a care home but I'm starting to panic that this is the only way that we're going to manage his diabetes................

MIL had the district nurse call once a day to administer her insulin after it emerged that she'd not taken any blood sugar readings for months. She was well into her 80s at this point, I didn't think there was a magic age where your pancreas suddenly sorted itself out.

At the start you don't know what services are there, what could be provided so you don't ask and you accept everything you are told. When you've beaten your head against a brick wall a few times you are more confident in asking professionals for an explanation or for other options because although that is hard to do it's less hard than picking up the pieces when it all goes wrong.

I have seen some wonderful joined up services, things promised and achieved at short notice with apparantly no effort. I've also had hours spent on the phone being passed from pillar to post where I wondered whether anyone kept records any more.

It's a lot isn't is? Thankfully I've got an understanding employer who turns a blind eye if I disappear to make a phone call, but no, it's not ideal is it?

One thing we've found with DFIL is that he responds much better to men. So if we said he needs meals on wheels and a carer he'd argue. If his Son or Son-in-Law have a chat with him about it he just does what they say. Infuriating but it may work for you.

It absolutely drives you mad and saps all your mental and emotional energy. You have my absolute understanding and sympathy.

We are dealing with MIL, who is now back at home after three months away following heart valve replacement. Getting her out of hospital to a place to convalesce, they then discharged her far too early, resulting in two falls, long ambulance waits and an eventual readmission to the geriatric unit in hospital. then to a care home to build up strength - the whole process has been a complete nightmare, it has almost broken DH.

From the start the hospital staff didn't even know which department was in charge of assessing her for discharge, the physiotherapists or the OTs. The discharge team (when we finally tracked them down) had different systems and requirements for patients from Devon and patients from Cornwall.

The nurse at the community hospital she was sent to didn't know that she had had an unusual procedure (the valve was replaced through the ribs not via the arteries) and refused to believe DH when he tried to correct him. This also meant that the district nurse turned up to check the incision in MILs thigh, even though she didn't have one, although she was back in hospital by this time but no one had told the district nurse!

Since then we have dealt with the co ordinator from adult social care, our main contact from the community dementia care team, the social care OT, the mental health OT and the company providing the carers. Our GP has been no help at all I'm afraid and any communication or sharing of information between all these various departments has been entirely down to DH.

DH is a senior professional, who has managed multinational billion dollar deals and I have never seen him so depressed and at sea as he has been this year, dealing with all this.

Hate to depress you OP, but this is just the beginning. The concept of joined up adult social care seems completely alien to our NHS - as far as I'm concerned we just don't have one, it's as mythical as Narnia, it only exists if you don't actually need it, especially if you are elderly.

@TonTonMacoute that sounds absolutely horrific.

I've spent the week on the phoning chasing my tail. We're still no further forward than we were 2 weeks ago. GP has phoned Dad and booked a shed load of appointments that he doesn't remember, then phones him back to tell him off for missing them. I've rang, emailed and put it in writing in letter for them NOT to contact him but myself or my sister. They found abnormalities in his blood tests according to the duty GP but both diabetic nurses have said they're fine. Diabetic community team spoke to Dad on the phone who merrily assured them that he's managing fine, injecting his own insulin and so was discharged by them. His meals on wheels haven't arrived for 3 days in a row and getting hold of the food company is harder than getting hold of the Queen for a natter.

I've literally never been so frustrated in my entire life. I run a successful business but jesus wept, this is beyond any realm of my comprehension.

@Badger1970

DH had to keep asking, over and over, 'what needs to happen next', 'how is that going to happen', 'who is going to make that happen' and 'how long is it going to take'.

MIL also has Alzheimer's which has been made far worse by her op, and keeps resisting any attempts to help her.

I just don't know how most people cope with it all, you have to be so persistent. DH spoke with the GP at one point and asked why is this so disjointed, surely it would be better for everyone if these departments all worked together? He just replied - forget it, that's never going to happen!

Just to update: my sister had to call an ambulance for Dad yesterday. He was confused, in pain and just not right at all. The paramedics found abnormalities on his ECG so took him in, and he sat on a chair in A & E from 4pm yesterday until 9am this morning when they found him a bed. He's even more confused as he's not had medication or insulin, let alone anything to drink. Thankfully they've moved him to the geriatric ward and the Dr was very concerned about the amount of medication he's on, his diabetes being out of control and his liver/kidney function is apparently very poor. He's having a liver scan later today.

He's beyond exhausted but I'm cautiously optimistic that they may find some answers. They've told my sister he'll be there for a good few days while they get all his tests results back. I'm going in tonight so he's had a few hours of company from each of us. He's no had any medication review for nearly 3 years according to his GP records............. the system is just so broken.