The second new shiny 2019 thread ...

DD1 has found a hotel room, but we cant access it (or the parking) before 2pm and graduation is 2.45 so that wont work. She doesnt want to go up the night before, but would use the room to stay the night of graduation so that's her sorted I guess. I dunno, have been racking my brains. No blue badge (got a disabled toilet key though!) It just all seems incredibly complicated, and if we are stuck in the middle of London and he comes over all peculiar with pain or something then we're fucked.

Yolo - could you drive and stay somewhere overnight to break the journey? Does your DH have a blue badge for the car?

We also have DDs graduation ceremony coming up. I have been trying to find something on ebay that I can wear as I don't have time to go shopping (and I am the size of a bus ATM) that passes muster, but I know I am going to feel and look a complete tit throughout (I have that working class imposter syndrome around things like that).

Yolo. Would a hotel room make it easier?

yolo the doctor was lovely to mum, just didn’t like her having someone with her.

She’s seeing the GP on Wednesday but the doc just said paracetamol for pain. Tbh painkillers upset her stomach too so it will be complicated.

Sorry to say it but I think that trip sounds too much for your DH.

rosa that doctor sounds like he needs to be rebooted for patient friendliness, and they def should be doing someting for pain, if not at the hospital then the GP? (although I know only too well how easy that is to say...)

our complaints procedure continues slower than a slow worm. local council has denied everything, although graciously conceded to some 'learning issues'. we have to follow a separate complaint with the care home the NHS contracted DM out to - which we will; and the local hospital trust wants us to come to a meeting. Back-covering all round going on.

DH now another painkiller which is working intermittently; next crisis is DD1's graduation a week today and whether he can come or not. I dont actually think he will be up to it, on current form, but obvs they are both gutted at that thought. Thing is it is a min 2 hour journey each way, plus at least 3 hours there, it will be hot and crowded (London), not possible to drive due to traffic/parking, and he cant sit down for longer than 20 mins. so it seems like a non-starter to me unless there is some kind of miracle cure in the next 7 days.

liminal sorry, I can't recall. your pharmacist should know? I also remember thinking that it would be useful info but didn't make a note!

how is everyone?

Someone mentioned the expression "bone tired" on another thread. I already feel like that!! Specialist just arranged more scans for mum so there are two sets now. In theory my sister will take her for one set but it's hard for her to get time off. She is mummysitting on the one night next week where I have to go out - not that mum can't be alone but I was just glad that she didn't have to be if you see what I mean.

walking through all the same bits of hospital that dad went through with his cancer and the main doctor who treated him was next door. much worse for mum of course.

they don't seem to care much that she has pains. They didn't say the c word but of course different doctors have different approaches. Both sets of scans will be done within 2 weeks so that's what they mean, right?

this particular doctor must have had enough of chaperones. he has the chaperone set "off" and directed me to it immediately, clearly didn't want to talk to me at all.

Sending and lots more to everyone here .

I dropped off the thread after posting at the start of the year but have been lurking.

to all and and where appropriate. Yolo, I'm sorry you and DH are still having such a tough time but was sincerely delighted at your good news.

I wanted to beg a favour - back in Jan, Mrsr8 very kindly told me about a newish drug that can be prescribed for pain relief for people with NSAID-intolerance. I stupidly didn't note it down and though I've found the posts, she deleted and I can't find the name by googling.

Would anyone please happen to know what it is? DM is struggling on paracetamol alone and could really do with a helping hand. Things are tough at the moment

figure just to add, I wouldn't be doing it either. I think it's lovely that you take your dad out; being blunt, in that situation, I would likely either say no or insist that we were accompanied by a carer.

yolo sorry to hear that he is still in pain. Sorry you are struggling too.

I hope it's all right to say this here as I was thinking aloud on another thread....if I'm about to repeat the exercise of "parent with cancer" I need to protect myself more this time. I remember at the time my dad was diagnosed, a friend who had been in the same spot said to me "you have to keep remembering that you have a life and you are entitled to be happy, even if it's just laughing at stuff on Twitter". It didn't seem right at the time, dad suffering so much, but now I realise I would have coped much better if I'd left the hospital and thought of it that way.

I suppose if mum turns out to be ill, one thing I won't have to do is leave the hospital and comfort the other parent and worry that they will get sick at the same time!

Yolo, it sounds awful. You must be completely depleted. Six years back I remember feeling 'bone tired' not an expression I use, but then it was right. I was exhausted, through and through, my mood was low and I had nothing lest. And that was despite support from DH and the then teenage children.

Do you have anyone to give you emotional support?

figure I wouldnt be doing that either, it is too much to ask.

rosa I hope your DM is ok, try not to worry (stupid thing to say!)

news chez yolofish: DH still in a lot of pain, got some more painkillers today to take alongside the gabapentin (which is apparently one of the most expensive drugs available on the NHS), and not in a very good mood. I am mostly in the garden, taking out my frustration on various things. DB appears to think he is not getting enough rent from the people in DM's house, why I have no idea but havent spoken to him for ages. Wine and fags are seeing me through, although we should all be (and are) delighted with the cancer free news, adjusting to the new normal is something else altogether.

cockroach all, stay strong and look after yourselves.

rosa sorry to hear this. Sounds you were absolutely right to go to a and e. Everything crossed for tomorrow.
cockroach all- yolo how’s things?

sorry for what everyone's going through
this parent thing is so hard!!

we've had an urgent call back from A&E, mum has to see a colorectal specialist tomorrow.

she last had a colonoscopy last year, that was all clear. I'm a bit surprised this has happened after discharge tbh. We're both trying not to worry about it. Not that it works terribly well.

once again I'm reminded of that awful MN saying about old age being better than the alternative. All the time and medical intervention mum and dad spent trying to avoid heart attacks etc....thank goodness mum refused the pacemaker or goodness knows how long a life she'd be staring at.

Thanks NotaFM. He is managing fine at the home. I suspect because he is not having to hold it in at all, the toilets are available as soon as he needs them and also spacious compared to a cubicle.

Yes good thought, pads are a possibility, he has used them in the past when he has had leaky bowel problems. But when he had a UTI a few months ago he was very uncomfortable with the thought of just letting himself go in them, so I suspect he would still want to go to a toilet and then we have the problem of him not controlling the direction of his flow.

Welcome Figure. What happens at the care home when he needs to go? Is there always someone around to take him? Is it possible to talk to them about using a pad when he goes out with you?

I know there are others on this thread who are ok to manage the business end of their dad's parts, but I'm afraid that I wasn't. When DF was in a hospice and needed the toilet I would always ask a member of staff to take him, usually they would suggest I took him, which I declined. Partly because he was a big bloke who wasn't steady on his feet, and I had no idea what I would do if he fell on me. But also, I really didn't feel that it was something that I was prepared to do.

Hi, just looking for some advice from others who may be in this situation.
Dad has alzheimers and is now in a care home. I take him out for a drive/walk every Saturday. He has problems with bladder control. Most of the time I manage to get him to a toilet but I don’t want to go in with him and he is struggling. The last three times he has come out with urine all over his trousers. Today he was in track suit bottoms which are easy to pull down, no faffing with zips or buttons and he still managed to cover his underpants, trackies and lower shirt with urine. I have tried persuading him to sit on the loo rather than stand in front of it but he either doesn’t remember once he is inside or just doesn’t want to sit. One of the carers has recommended that I find a disabled or larger facilty that we can both fit in and go in and stand behind him! I don’t know what I am supposed to do when I am in there with him, reach around and guide his penis? This is just beyond what I am prepared to do. I am already more familiar with my father’s penis than I ever wanted to be because of various medical issues over the last few years. I have also spent more time than I care to think about mopping up his urine and cleaning his faeces. I really, really, really don’t want to go into a toilet with him and help him direct his urine flow. Am I allowed to have boundaries where I can say, “this far and no further,” or am I being precious and this is just something you do for someone you love?

Rosa early in the process my lovely, GP, cousin explained that you will never know that you doing the right thing. You can only do what you think is best at the time.

Sometimes you will be right, sometimes you will be wrong.

I saw my mother yesterday. She had the TV full on, which was great. No need to try and make conversation. I find visits very difficult. Luckily living in sheltered housing means she sees lots of people, and she really likes her carer. There is still a lot to do to keep the show on the road, so I have stopped beating myself up about not wanting to see her.

Cockroach to all.

whatever I don't know that song, will look it up

Mere & sandwich thank you.

in terms of what it is - with her heart, she refused a pacemaker in the past and she does want to go in peace, so to speak. But with stomach, it's more practical. I asked the GP, if it gets worse, will an ambulance take her, and he said it's unlikely. I didn't push her but I think left to herself she would have ignored GP advice.

she does understand that I couldn't just say "leave it" - she's not annoyed at all.

I think one reason she refuses a call button is that she would rather not call - which I do understand.

typically my sis was away while this happened.

I'm really starting to notice the "friends" problem - they can prop each other up a bit, but at this age they all have a range of problems. Certainly no one fit enough to be in A&E with her.

Thanks rosa🌺
I think you did the right thing....... otherwise it could have been weekend emergency. Don’t beat yourself up.
whatever things have been busy for you! Major change!

Morning all. Just trying to catch up on everyone's news. Yolo so pleased about DH. Our DS has just gone away to start army basic training and DD1 has finished GCSE's and had the whole prom marlarky. All positive things but a reminder that nothing stays the same. DD thinks it's hilarious to keep singing 'slipping through my fingers' from Mama Mia.

Have made the most of the opportunity and installed two lovely chinese students in DS room!

hit send too soon

left to herself, she'd not have gone through the whole A&E experience. But I was also thinking it was better to go on Friday afternoon than Friday night - she was saying "if the pain gets worse, we will go".

sandwich I hope you feel better asap

all

fellow oldie wranglers, I fear I might have done something v stupid today

for reasons I won't bore you with, I thought mum needed to go to hospital. GP agreed and thought home visit pointless because bloods needed. So I had poor mum chuck stuff in a bag and off we went to A&E. 6 hours later, we got the all clear.

I think mum is being very polite and accepts that I was trying to do the right thing, but probably also wishes I hadn't been due round today because it was certain things I mentioned on the GP call that made him say "go to A&E". All part of recent medical history, but she could have a nice afternoon at home - albeit with stomach pains - if I hadn't got on the phone to the GP.

not sure if I did the right thing here. But when you are responsible for an oldie, they have to actually refuse A&E surely, otherwise you have to take them if the GP or 111 says so?