Caring for elderly parents? Pop in for support and a rant

[thesandwich]

Pace yourself, it's a marathon not a sprint!

This is a safe place to offload- don't be embarrassed about how you feel. No judgement here...

There are lovely people here with practical experience of some of the issues which crop up who'll share their hard won knowledge!

Hello everyone

Please note slightly different username, something went weird. I had hell's own job finding this thread I'm so used to clicking on "I'm On" - we're in "other stuff" strangely - ha ha. We're so niche, so fancy.

I have a streaming cold and living on Lemsip. Not particularly ill but sneezy and snottery and not a good idea to go near M&D. It's a bit of a relief but not really as it's difficult not to worry.

My unofficially adopted sister has played a blinder and taken over home made soup which they are eating and enjoying. I called 101 yesterday and said I was too sick to tend to my very elderly parents who were both just out of hospital that they had food but someone needed to look in. They sent a community nurse out, I thought that was very good.

I was in floods of tears today just realising that my lovely Dad is fading and the end will come sooner or later, I miss him so much already. He was always like the grave, you could tell him any secret or problem and he would talk it through and help think through a solution. He was an excellent laugh and so clever. Bits of him are still there but not as much of course.

I felt so miserable that I spent a fair amount on perfume. It's ludicrous, I'm falling to bits and have no idea where or if there are any clean knickers but at least I'm beperfumed!

Jace I'm surprised that they are restricted your time on the ward, what kind of ward is your Dad in? Mine was in cardiac care unit and we were able to stay 24/7. There was a big notice saying "carers welcome - we want to work with you". I said to the nurse "you cannot give him one to one can you, therefore you need us here".

Tbh I wouldn't recommend 24/7 - it's backbreaking but we just didn't trust them to give him the level of personal care he needed to be safe. Had he been in hospital any longer I would have started looking into DOLS and a higher level of personal care.

As my account went weird I thought to myself "should I give up MN?" but I got withdrawals from this thread.

I mess about a little on the rest of MN but it's this thread that's the real lifesaver. How long has it been going?

When my father was in hospital, visiting hours were such that one would never see the doctors (although we were permitted to come before the official start of visiting, once he became very ill).

To my knowledge, this thread's been going for about four years, at the very least.

thighofrelief101 it’s just a general ward - visiting is 10-8
DF already has DOLS applied as he needs to be strapped into wheelchair, have bed rails up, sometimes mitts on to stop him pulling out NSG or removing clothes and pads etc
His limited cognition means he has no idea of risk and would grab a drink or feed and potentially choke or could attempt to climb out of bed/chair risking injury etc

It’s very frustrating that the main people who can provide them with helpful info are not included (self and DB) whilst they try and consult with DF himself eg ‘do you have any pain?’ When he has no glasses on/hearing aids in - with variable cognition and is a people pleaser so will always default to the correct social nicety response!

I might take in his recent CHC assessment which at least gives some idea of his level of needs

Jace it's not on that you and DB are not in on the Drs rounds. What's the point in them asking your Dad stuff without an interpreter or advocate who knows him well there. Dad tried to people please in the hospital too and his answers were just nonsense. As he is someone with DOLS that should be so very obvious to them, lack of joined up thinking on the ward.

thigh it sounds like your body has gone on strike, so it's a good idea to listen to it. You and your DCs can't do it all for your DPs. I know this is hopefully not the norm for them in terms of the level of care they need, but maybe you need to think of putting something more sustainable in place?

Jace hope today is better.

thigh you can't leave MN!! You have obligations and Brunel engineered underwear

Aaaaargh!

There is a big party of my Dad's family tomorrow. I offered weeks ago to be there to wrangle mum, and more recently changed the offer to "I will look after mum elsewhere so you can go".

I STILL can't get dad to decide. I wouldn't mind but I have a houseful including my son, 2 steps, partner and his sister and I need to know what the fuck I am doing for them!

In the mean time distant sisters keep reminding me to make dad look at nursing homes and offering "help". From the other end of the country. FFS.

Been at hospital most of day ensuring things get done
Managed to speak to a Dr, nutritionist and SALT so DF now has feed reconnected and is allowed yoghurt and thickened fluids supervised by staff
My next mission is to make sure they hoist him out of bed into chair for minimum of 2 hours

Well done Jace.

Have just fired emails and calls at the mental health people saying it's about time they did something now the MRI and ECG and blood were done weeks ago.

God knows when anyone will look at them let alone answer.

Oh Jace sounds hellish and heartbreaking 💐 ,I am only beginning to realise that everything you have to fight for and I am only at the beginning journey of that stage with mum.Dad has parkinsons with 24 hour care required and my mum was struggling to cope and he has been in a permanent home since this time last year (self funding ).My mum although had various health problems was coping relatively ok up until a few months ago and then shit hit the fan and I don't think she will ever be the same or cope on her own.She doesn't want to go into a home so I have a battle ahead to put in place everything I can to keep her safe and looked after!!so I will probably require you lovely people expertise! I have struggled to cope through it all as I also have my kids to look after but tbh they keep me sane. My brother used to be useless but has just split with his partner and has a look of spare time now 😂plus my husband has been fantastic but it terrifies me what lies ahead and just trying to cope with the worry and enormity of it all

I left ward at 7 with promise that they would get DF out of bed for 2 hours when hoist became available
Rang as agreed after 9 to check and they said he was sleepy so they didn’t think it safe and they asked him and he said no
Which bit of no capacity - unable to make cognitive decisions - need to be hoisted into chair to improve the aforementioned do they not understand!!!!!!
When should you make a formal complaint

Jace Oh how worrying and frustrating. You have achieved a lot today though meeting so many different people. There is something wrong with the NHS with regards to personal care for the incapacitated on wards. I think the critical medical care is good but the extra bits of hand holding to calm the agitated, washing, supervision - it's just not there. Is it funding, understaffing, cultural, laziness - I don't know. I watched some Asian families who had a constant vigil at the bedside and were forever popping tiny bits of food in their relative's mouth, chatting and reassuring quietly and doing a lot of personal care. I know someone Irish from a family of 15 siblings and since their mother was widowed they each take it in turns to stay with her. Be fine if you only had to do 1 day in 15 - imagine the sibling rivalry and resentment though - ye gads!

Grace I'm here for the duration, you and I will be here on this thread in 10 years time I imagine!

Jace could you ask to meet the ward manager? Does such a position exist? I think to be asking him if he wants to go in his chair when he doesn't have capacity is just lazy.

Well, doesn't begin to meet what Jace is going through, but Dad phoned us at 2am ..... to tell us he was about to go downstairs.

Took me over an hour to get back to sleep again.

I really hope this isn't going to become a habit.

Exactly this time last year a woman with no relatives from DM’s then care home was admitted to hospital. I did not find not find out for the first 48 hrs. Between Xmas and New Year there was only a skeleton staff in the two wards she was in and for a vital tilme no palliative team available. My DSis and I were with her round the clock for her last four days. For all those trying to do the best for an elderly loved one in difficult situations I’d say be as vocal and demanding as it takes. You may only get one chance. My DSis and I were so shocked by the lack of care we witnessed that we jointly decided that at the stage my DM is now, we will not seek hospital admission on her behalf. Sending strength to all of you experiencing frustration albeit in slightly different situations and in particular to Jace for calling out those in ward 7

Jace - I second the suggestion of speaking to the ward manager. What made a difference for us was a (frankly bizarre) exchange in which the ward manager approached us to ask whether we were happy with the information we were getting from the doctors and we pointed out that visiting started two hours after ward rounds and so we never saw them. That’s when we were given permission to go early every day. Our experience too was that non-critical care was poor - meals left out of reach and no help given with feeding, no help given with personal care such as teeth cleaning. We had to be quite robust about pointing out dad’s needs.

oh dear Dint I guess your dad doesn't know what time it is?

I have a weird question, but there's so much experience on here...

Before dad went to hospital, he opened a couple of internet bank accounts in mum's name. I'm sure the details went to his email etc but no one knows the password for that either. I can see evidence of a bank transfer so there is money that we need to retrieve.

I'm guessing mum just has to write to the banks and explain what happened? It doesn't look great, saying "My husband opened accounts for me and now I need the money but I have no idea what the passwords etc are" - but there's no way round it is there? My mum doesn't use a computer - she needs the accounts to be transferred to something she can use.

My guess is we will have to send off ID for mum and a copy of the death certificate and so on? Very much hoping that will be enough and we won't need to get a solicitor to get the money out?!

Thanks for any advice - though it's such an odd thing, maybe no one does have any experience of this!

Can you do a 'forgotten password' grace? I think that could work if you can chose to have the code sent to a mobile registered to the account that you have access to?

Failing that, pitch up to a branch of the bank if they have one and throw yourselves on their mercy? I set up online banking for my access to my DM's account with Barclays once I had POA. It took three attempts to sort it, and the 3rd person I saw was very helpful. The first two got tied in knots over data protection.

Grace If the internet bank accounts are with High St banks I’d make an appointment and go visit if time allows. Take your dad’s death certificate, some confirmation that you are his executor and your POA for your mum. For good measure bring your own passport and proof of your address in the form of utility bills. The bank should be able to give you a print out of what they have on your parents’ behalf. Be prepared fir several visits.

thanks nota and fortysix

the banks in question don't have a high street presence. Mum doesn't have an email address - dad must have tried to sort it using one of his, for which we have no passwords. I'm amazed he managed to set them up to be honest.

I'm not the executor or POA. Ultimately mum has to sort this - with my help. I just thought I'd ask on here before we call the banks and explain the sorry tale - which is going to be quite an experience given

1. mum's stress/grief level (you might have seen I had to call 111 on Xmas Eve as she was having palpitations)
2. mum's accent
3. mum's inability to understand any other accents
4. mum's complete lack of knowledge of anything banking!!

it's going to be a nightmare. Oh well. As far as I can see from the utter chaos that is the paperwork, he only tried to open 2 internet bank accounts for her, sadly he moved quite a bit of money to them so we can't really leave it till she is feeling better.

PS I should add - I don't mean the paperwork will be a nightmare, I mean dealing with mum trying to do it will be a nightmare. She still has anxiety over regular post coming in.