Support for those who care for elderly parents - drop in as you need, everyone welcome

[CMOTDibbler]

All of us would rather not be here, but we need to be - with the people who really understand.

Thanks querky. If I can do anything about it he's staying at the home , no drips or anything. We have a full end of life plan and drugs in place if needed. The home have done end of life before. My team are the best ( I have to say that, but they are) so as long as he deteriorates " in hours " we are sorted. Out of hours is less predictable.

I did this for mum and I'll do it for what's left of my lovely dad.

helenluvsrob you will do a fantastic job, just like you did for your mum.

patty sorry you are here, but glad you are here too, I'm sure you'll benefit from the heaps of experience, advice, sympathy, shoulders/ears etc & humour on this thread. Invaluable support and a place to rant or just let it all out.

to everyone struggling along

SugarPlum, sorry to hear that, but I guess at least you know where you are now.

Helen, sorry to hear your news too - it sounds like you have got everything in place to support him - I hope it goes as well as it can for him. Don't feel guilty, I know I would feel exactly the same, and so will many others.

Hi Patty, I am relatively new to this, but this thread has been absolutely invaluable since my DM's diagnosis

Welcome Patty, don't know what I'd have done without this thread.

HelenluvsRob , I'm really sorry. Your Dad is very lucky to have you.

Thank you all for your support. I need to know now that we've got end of life care sorted, I think there are a few differences in Thailand about how some drugs can be administered. My Brother has for so many weeks talking about when she is better and rehabilitation that this hasn't been looked into yet. I knew she had cancer a few weeks ago after looking at a photo, you could see it in her face.

DD very upset about it all and needing a lot of handholding. I'm helping a friend this week get her house ready for holiday lets and Dad plus partner coming down Saturday so have a lot to distract me which I'm finding helpful. i forget most of the time that although they've been separated for over 20 years they are in fact still married.

Oh SugarPlum So sorry your DD is so upset too. Keeping busy is a good plan.

Thanks BTM. She's the grandparent she saw the most and remembers going to beach with etc. Plus it's only 6 months since FIL died so I think there's a strong sense of them dropping one by one for her, poor thing.

It is such a relief, isn't it, when the care home is on the ball with End of Life Plans.

One of my sons' is in the Ambulance Service and says what a difference it makes, when there are clear instructions about this.

I could not fault my mums Care Home or the Hospital.

Hi all, I hope you don't mind me jumping in with an intro. I haven't managed to read the whole thread, but have been dipping in and out and feeling a bit comforted by the fact that there is a lot of us here in the same boat.

I am currently caring for DM at home. She has COPD and heart failure and is currently on oxygen 24/7.

Since Jan she has needed round the clock care so I am going over morning, lunchtime and evening/bedtime. I had hoped that she would get a little better but there's little improvement and I think that this is just how it is for now. I have a lady who goes in 2 mornings a week so I can work 2 full days, and work afternoons only the rest of the week as well as looking after my own family. Luckily dsis is close by too, and does a few of the evening shifts.

We are at the stage where she is still in denial about her abilities and I have to drip feed "Wouldn't it be easier if...." to get her to consider some adaptations.

I have been here before as I cared for df with terminal cancer many years ago.

Love and support to you all x

Hello tarrrara- you are right this is a very supportive and knowlegeable thread. For me background is fil had a major stroke 7 years ago which accelerated dementia in mil. He is now in a nursing home with the odd incident but well looked after. Sadly mil deteriorated rapidly and died 18 months ago which was a huge release. DM is 90 and has very limited mobility but full of marbles and opinions😳 Who I do a lot for- and lives very close plus dd who had a really tough time through a2s and is doing resits this year- very much affected by all the challenges of the elderlies. And I also work! Sounds like you do an awful lot for your DM. How old are your dc'c?

Hi thesandwich, multiple elderly sound very challenging. You must be really busy! I do like the sound of your dm with her marbles and opinions, I think she and my dm may get on very well! My dcs are 9 and 13 so old enough to be a little bit understanding of the situation. It's tough on children emotionally to see grandparents in ill health I guess. Hope your dd's resits will go well, exams are stressful at anytime, let alone when you have other issues going on... x

Hi tarrara welcome!

You OK sandwich?

My dad is keeping us on our toes. He was back feeding himself with a knife and fork yesterday , which shocked me! I have backed off on visits /contact to be honest though and that was the 1st time since Fri. I know he's well cared for.

I was rested enough to start some crochet during a back episode of the bridge last night. I've been so tired I can't remember when I could last wield a hook!

Thanks Helen- yes I'm fine. Fil seems to be improving- hoping we can get him out at the weekend for his eldest granddaughters 21st.
So glad to hear about your dad- and your return to crochet!
Hope everyone else is doing ok

Haven't been on here for a while. DM (87) has been in hospital since before Christmas. She has gone from one illness to another. One week they're waiting for a rehab bed at local hospital for her, the next week they are talking about a palliative care bed. Went to visit her on Saturday but she wasn't good. Breathing was so bad that I could barely understand what she was saying. DB2 went on Sunday and said she wasn't even on Oxygen??? DB1 went on Tues and said she most definitely was on Oxygen.

Anyway, she has clearly deteriorated in recent weeks and hospital rang tonight to say she had deteriorated further today and was very weak, hadn't eaten and breathing was poor. They were suggesting we get over to the hospital which is 2 hours away. I am not able to go as I care for my disabled DD and can't just drop everything and go so rang DB1 who was at work but said he is off tomorrow night so could go then. Anyway, he rang the ward and next thing was texting me to say he was on his way over there. Has just texted to say he has arrived and DM is asleep and has not responded to him - could just be that she is asleep and deaf (wears a hearing aid when awake).

I'm not sure if this is the end for DM or if she will drag on like this for weeks yet. She has had no quality of life for the last 3 months stuck in that hospital in a room on her own doing nothing. I really hope the end comes sooner rather than later - am I really bad for thinking like that? Don't think I'll get much sleep tonight as I lie awake waiting for the phone to ring with news. Don't know how long DB will stay there - he's used to being up and at work until the wee small hours but you never know when to leave in a situation like this.

Bigbluebus, you are not a bad person. I had the same thoughts when my Dad was in his last few weeks. You just want your loved one to be comfortable, pain free and blissfully unaware. Hoping that the remaing time you have with your dm is as peaceful as it can be

Helen it sounds lovely to feel rested and want to do something fun. Enjoy the rest

Hello, I wonder if I can join in. I have only just found the thread, so have only skim read so far.
My parents are both in their late 80s. dF is very frail and has just got home after weeks in first hospital then rehab. He was so ill when first admitted to hospital that he was not expected to pull through. He has been in particularly poor health since a stroke 2 years ago. I live more than 100 miles away and have a disabled child, so am not able to be as much support to DP ( especially during the school week) as I would like. DF has a carer come in 5 mornings ( for 20 mins only so not much can be done) a week to help get ready to get up, but I feel they need a lot more support than this. Both are very independent, so it's difficult to get the balance right between interfering and helping.
Bigbluebus - I feel for you. I hope your DM is peaceful. It's hard not to be there and see for yourself.
Does anyone know much about renal failure- specifically stage 4 CD? dF has many failing systems, (anaemia, heart and COPD overlap) and is under a eldercare specialist, but DM - who is looking after and doing all of the cooking for them both has been given no guidance on any diet. dF can barely eat he is so breathless and struggles to walk at all.

Welcome Maggiso. I'm afraid I don't know much about heart failure.

BBB if you're a bad person then so am I. This started with my Mother before Chrustmas too really though she has been in and out of hospital. I've just had a but of meltdown as a friend was sort of pushing me to go to Thailand but I really don't want to. She's just had the second anniversary of her Mum's pretty much unexpected death so is coming from a different angle from me.

I made the decision when she went over last year that I wouldn't be going and was very clear about that and haven't changed my mind. DH made the decision not to go over before his Dad died last year so knows how I feel, that helps a lot. I'm very jumpy around the phone at the moment .

Hi Maggiso

I don't know about kidney failure, but what I have found out that it I bloody difficult to get information from drs! I spend a lot of time googling, or, you could ask your dfs Gp for advice?

I am really tired of having to hunt for answers though, and battling to get any help. It is so frustrating! You could ask your GP to do a home visit and perhaps contact social services about some additional help?

Sugarplum, sounds like you have made a good decision. Doesn't make it easy , particularly when other people try and tell you what to do!

BigBlue, do not feel bad - I think there is a problem with our systems here, when aged people are being kept alive long after any quality of life has disappeared. I wouldn't want it and I know DM doesn't want it, but we won't have a choice if/when the time comes - it seems to be keep them going at all costs.

Hi Maggiso, I'm afraid I don't know anything about renal failure or anything much else but I agree, it always seems to be a question of hunting for answers. Thank god for this thread!

SugarPlum, you are doing what feels right for you - sod your friend. Other people with their own issues put their views onto you and make you feel bad - don't! You have made a perfectly reasonable decision about your DM, don't feel you need to justify it to us - you have done your fair share already

Sorry Maggiso. I read that as heart failure and I'm afraid I don't know anything about renal failure either.

Thanks BTM. It was very well intentioned and I know she was trying to spare me from the regrets she had after plus it has made me really question myself. I've woken up still firm with not going.

I absolutely agree with keeping going after loss of quality of life. Whilst we were going through all the diagnosis last month my Brother kept on going on about rehabilitation and getting her back to how she was in January when she was getting out and about. I agree she was having some quality of life compared to being stuck in a room but I looked at her in a photo on an outing with the carers and I remember the following thoughts going through my mind - she's not smiling, she'd be gutted if the old her could see her hair now, why is one breast bigger than the others, she'd have freaked out if she had seen this picture as a snapshot of her future, if she was the dog she wouldn't still be here.

That probably sounds awful but it was what I thought as an immediate reaction.

I just want to offer support for those watching relative's coming to the end. In our hearts we know we want it come soon for them. Somewhere very deep we feel gulty for wanting it.

I found this site so comforting when I was at the hospital with my mother last year. She died in October. So sad that so many of my comforters are still here

DB has been at the hospital all night. DM has not woken up at all. I feel bad that I can't get over there just to give him a break. No idea how long he's planning on staying. I daren't leave the area even though DD has gone to her Day Centre as she is not in the best of health at the moment either and I could get called out to her at any time too. I will try and get over to DM tomorrow if it's not too late.

Sugar Plum It is so hard managing the situation from a distance but you have to do what is right for you. I didn't see my DF before he died as he went very suddenly and unexpectedly. In a way I was glad to remember him the way I last saw him which was in fine health. DM's last couple of years have seen a gradual decline as she struggled to manage on her own. She was in poor health before DF died. The last few months have seen her decline much faster.

The hospital decided a couple of weeks ago to let nature take its course and stop pumping antibiotics into her. She hasn't been on a drip either so is only getting what nutrition she can take in herself - which yesterday sounds like it was nothing - up until then she had been eating and drinking a bit.

Querky You are right, it is hard when you just want the end to come - partly for your loved one to be relieved of their suffering and also for ourselves. Very deep down is also a selfish part of me that wants it to happen now as it would be more 'convenient' due to DD being in respite next week and DS flying home for Easter for 3 weeks. For that bit I feel very guilty.

Sorry big blue- I really understand what you are saying- I felt the same re mil last autumn. Dbil came over from oz and we hoped he would be able to be here for the funeral. Suffering is awful to watch.
SPT- you did your very best when she was here. Trust your instinct.
And guilt is a corrosive emotion which helps no one. Be kind you ourselves.

magioso

I have a lot of awareness of stage 4 CKD. renal failure was ultimately what mum died of - as well as , well pretty much everything else failing, especially her heart.

The professional view is that renal failure is a gentle way to go. Mum was probably kept going for longer than she should by fairly intensive input - but when we finally said no more and got her home it was really quite a " good death " .

If you want to look at the write up I did on here search " Theas18" my pre hacker gate name.

Thinking of you

Thinking of you BBB. I hope you get there in time today.

I've had an email saying mornings are a bit better and a picture of her eating so I think I can stand myself down from being imminent (though you never know I guess).

Said to my Brother I hoped she doesn't go on my nephew's birthday the beginning of April. He said that's ages, implying she would be gone by then but having gone through this with PIL I think it might be longer than he thinks.

Trying to keep everything as normal as possible in the circumstances and looking forward to out visitors today.

Thanks SugarPlum. GLad things seem to have improved slightly for you. Sadly my Mum passed away in the early hours of this morning - so I didn't get to see her. The hospital had also sent my DBro away to get some sleep and told him they would ring if there was any change. Unfortunately they only rang him after she died so he is pretty gutted about that having sat by her bedside for the previous 24 hours. I think she just went peacefully in her sleep, which is always a blessing.