Dad dying, how to cope with Mum

[MintyCedric]

I was on here about a year ago after my dad had a bad fall and broke 4 vertebrae.

To cut a long story short, although there was no spinal cord damage and we got him home after 7 weeks, he never really recovered and his health and wellbeing has been on a downward trajectory ever since.

Shortly after lockdown he became largely bedridden (other than going to the bathroom) due to weight loss and lack of strength/balance. Verdict of 2 x GPs and practice nurse is that it's likely he has some kind of late stage gastrointestinal cancer and a prognosis of a couple of months at best.

Over the last week has been struggling to get to the bathroom (he has a commode and portable urinals in his room.but I've had to hold him up to use the latter. Today he made it out to the loo but I had to lift him off it).

Mum seems to be somewhat in denial and is not really managing to make any decisions about equipment and carers, and emotionally is utterly exhausting.

I'm visiting them almost daily, sometimes for several hours or more than once, but feel I'm spending all my time propping mum up. I want to be supportive but I'm also trying to work from home, keep an eye on 15yo DD (who is great but starting to forget what I look like), keep my own home/paperwork under control and look after myself (which is frankly a lost cause).

I feel guilty as hell for both resenting Mums demands on my time and brain space, and also because I'm dealing with the dad aspect on autopilot and have barely cried or even begun to process the situation.

I imagine my mum's emotional demands will only get worse and feel like my life is basically going to be over for the foreseeable future. I'm terrified I'm going to have give up work and my home to care for her and although I love her dearly, we are like chalk and cheese and I just don't think I could cope.

Yeah I know. I think I spend all week coping with them and wfh, feeling guilty that I'm not present enough for DD (who is nearly 16 and absolutely fine) and then I get a 'day off' and the slightest trigger sets me off on one.

minty, that says to me you are running on empty. Please protect yourself.

5am call from welfare line this morning.

Got round there to discover dad wanted his water which mum hadn't left within reach, and couldn't raise her (she's deaf and obviously doesn't sleep with hearing aids in).

Apparently mum had established this but thought he wanted something else so asked them to call me round .

I've suggested that rather than coming round I do 2 x 24 hour shifts a week, Mon/Tues and Thurs/Fri, plus come round Sunday lunchtime for a social visit and bring a precooked Sunday lunch so she doesn't have to cook. This would leave mum 'on her own' Wednesdays bar am/PM carer and a 2 hour befriended visit for Dad, and Saturdays (2 x carers again).

Dd is nearly 16 and happy to stay at home overnight, and XH has agreed to tweak the days he sees her to balance the time I get with her.

Naturally this suggestion wasn't good enough 'don't bother with us then'. Also had it thrown back in my face that they took us in when I left my emotionally abusive marriage. We lived here for nearly 2 years and whilst I'm incredibly grateful for their help and that we didn't end up in a grotty bedsit, it was mind boggling stressful,and not just because I was going through a divorce.

I pointed out that it wouldnt be fair to expect DD to move in here and live in this environment when she's already struggling with lockdown andworried about her GCSEs etc. I can't just take her out of her home. Mum did a bit of a volte face at that point but won't agree to the 2 x 24 hours still because she doesn't want me to leave her overnight.

I did wonder about suggesting we move dad on with me, but I don't think mum will go for it as would mean she's on her own and not in control.

And that is the crux of the matter - she wants to be in control but at the same time can't/won't cope.

She's talking about him 'having to go in somewhere' but that would mean under the current circs that we couldn't visit him and he'd die on his own.

She's next of kin and completely compos mentis so I'm stuffed in every which way. No family, no siblings...

The other issue of moving dad in with me is that mum would expect the same treatment.

Not only do I not really have room (I'd have to turn lounge/dinner into a bedsit for me and put dad in my room which would be ok short term), but frankly I'd rather jump off Beachy Head.

This is so familiar! I had very similar when my DF was ill a few years ago.

Firstly, it's awful. You are losing your dad, your mum is making it all about her and you are stuck with it.

1. There is a limit to what anyone can do- it is about identifying the least worst choice, rather than any good choice.

1. Your dad chose to marry her, stayed married to her, and allowed her to be the person she is. He has responsibility for this outcome too, he isn't a poor unwilling victim. Harsh? Yes, but also true.

I'm so sorry you are having to go through this. You must look after your own health for the sake of you and your DD. Living with toxic stress can make you ill. Put on your own oxygen mask first and all that.

First you must identify some self care.
What can you do to top yourself up?
Do you need time off work (don't tell DM), get signed off?
Do you need medication to tide you over? I did.
Build in some routines that are all about you or you and DD- family breakfast, a game, a bath with candles, whatever you like. Get it built in to your week.

Re your idea about staying which she's claimed isn't enough, you have to go nuclear- that's what she is doing, you must too. 'Oh dear well that's all I've managed to arrange with work. Otherwise I'll only be able to come for an hour every evening. It's up to you, of course'.

I'm so sorry you are going through this.

I thought that read 'what can you do to top yourself' (tempting at times tbh, but no).

I'm working from home. Mum cannot wrap her head around the fact I actually need to do some work, admittedly am not expected to put in a full days worth, but need to check in, keep on top of things etc.

I've tried so far to keep Wednesdays and Saturdays for me/DD but when I phone to check in mum is always in state. It literally doesn't matter what is happening.

I'm trying to maintain my hobby - I write in my 'spare' time which is great escapism, but you need brain space for that so I can see it falling by the wayside. I put my big project on hold a couple of months ago and writing shorter stuff until I can get back to it which I'm desperate to do.

My dad knows what mums like and he does take responsibility, but he's a sick, frail old man and I absolutely adore him.

There is no-one else and I'm doing my best to put some boundaries in place but I can't just leave them to it.

I understand. When I was going through it, I was determined that it was just there for Dad, and that when it ended Mum would have to sort herself out. She was difficult for a while, but really did very well.

You have lots of good things in place, well done. Don't rely on carers to sort everything out- DM still managed to interfere with what they did.

This isn't an unusual situation, don't be afraid to talk to social workers, GP etc. They will have heard it all before. But there is a limit to what anyone can do.

Thank you.

Dad was quite tricky this morning. Normally when I'm there he doesn't call out much but mum says he does it all the time when I'm not. I was round for about an hour and a quarter this morning and he called for someone about 4 times. He does seem more confused and was in pain with his back.

He's declining steadily but we have no timescale as he's too frail for any conclusive tests.

I went for drive along the seafront after leaving, came home had a bath and am going to make a bacon sarnie and a decent coffee and do some writing before going back this afternoon and trying to get mum to have an afternoon nap.

I'm going to go and stay over tomorrow as I've suggested...hopefully if she sees it working she'll stop moaning and go with it.

I just need a routine...I can't cope with being there on an ad hoc basis with no boundaries, and it doesn't seem to be much help to them either.

I think I am going to have to put my big girls pants on. We have the community nurse coming out on Tuesday and I'm going to try and speak to her on the phone beforehand as she's bloody marvellous and I'm sure will help with some mum wrangling!

I feel really sorry for you reading your posts. I was in a similar situation with my own Mum who died from bowel cancer last year. I am an only child and my Mum had no one else apart from me (no other relatives / friends etc). I have my own health issues and a disabled child. There was simply no way I could become her full time carer, which is what I think she wanted - she cared for my Gran at home through my Grans own terminal bowel cancer and it was sort of clear that that’s what she expected me to do for her. But I just couldn’t. It was too much for me, we had a complicated relationship and I needed to protect myself for my own health and my son.

I lived 10 mins away from her and she would be ringing me up because she’d managed to get on the commode next to her bed and couldn’t get off again so I’d end up going round at 3/4am or whenever; or rushing over when she’d had a fall. There was a huge amount of pressure on me.

Ultimately I had to really lay it out to the nursing team and hospice team that I couldn’t do it. I felt awful but the more I responded to things the more they expected me to do. I literally had to say I can visit on xx and xx but other than that it’s down to you to provide care and support. And eventually they did - carers initially 4 times a day and eventually she went into a hospice - she owned her house outright but didn’t pay anything towards it as she was terminally ill and it was paid for through continuing healthcare (nhs assessed her).

I know this is slightly different for you because you have your mum as well as your dad but honestly if you keep going the way you are the care agencies etc will pull back because they may see you as their key worker.

I would contact their GP about your Mum. You can say she’s struggling and having severe anxiety, which is understandable but she needs some support herself that isn’t coming from you.

I think you need to start putting yourself and your dd first. Tell the various agencies that you can’t be there 8 hours a day. That is crazy and no life for anyone.

When you go round, can you try to make some sort of assessment why your Dad is calling out?

Is he just bored and wants company?
Confused and doesn't know what he wants?
Continually wanting repositioning?
Saying he is in pain?

If it is the last 2, then he needs his pain medication looking at - constantly saying the bed/pillows aren't right usually means the person is in pain.

If it's needs to do a wee, related to a wee eg wet bed, then it is time for a catheter.

Well, it's hard for your Mum, her life partner disappearing before her eyes, but still caring for him 24/7, getting broken nights to boot. But even so, you can't carry on as you are. What is the worst time for you mother? Is it the nights? You've offered some 24 hour stays - could you instead do the night shift a few days a weeks but on the understanding that you would switch your phone off the day after while you catch up with the rest of your responsibilities (rather than catch up with your sleep, as your Mum will no doubt point out that she never has time to catch up with her sleep)

When I read your 24 hour plan, I inwardly shuddered - it's not something I could cope with. Even the 3-8 hour visits - 3 hours plus I have done many a time, but 8 hours on a semi regular basis I couldn't manage.

In my experience, much as I love my father, close contact with his bodily functions is far more difficult to cope with than it would be if it were my husband I was looking after. this is a way of saying caring for your dad is even harder for you than it is for your mum.

Thanks all. Bagels I'm sorry you went through this too, and I think 'complicated relationship' definitely sums up where I'm at with Mum.

She had an (imho) unhealthily close relationship with her own mother (didn't leave home until she was nearly 40 and married - I was 2.5), and expects us to be exactly the same. Sadly, although we love each other dearly as mother and daughter, as individual people we just don't really gel.

Anna it's hard to say as it's sometimes different things, but usually toileting or needing something that's not in reach. We have a special cup for him which has a timer to encourage him to drink. It was a faff to set up so we've never used it, but it has a sippy cup type lid so I'm going to set that up when I go round later.

I think he also needs to be encouraged to take his painkillers every four hours rather then waiting until he's in pain to take them

We've got a hospital bed now, and he's still just about got enough lower body strength to push himself up into a sitting position so he can get comfy against the back rest, although he can't hold his own weight when he's in his feet. I will ask about a catheter when we see the nurse on Tuesday but don't hold out a lot of hope. He was flat on his back for 10 days in hospital last year while they tried to find out the extent of his back injury, and they wouldn't go one then due to the risk of infection, although given where we're at now maybe it wouldn't be considered such an issue.

Mere ikwym about the 24 hour plan, but I think I'd find it easier to be round there more consistently than constantly bobbing about every few hours. It would hopefully mean that mum was better rested and more able to cope when I wasn't there, and the pay off would be bigger chunks of time at home e.g. midday Tues - Thurs - at the moment I feel obliged to stay well into the afternoon on a Tuesday and hot foot it round on Thursday morning as I'm not there Wednesdays.

What is the worst time for your mother? At the moment it seems like any time dad needs something she hasn't planned for, i.e. isn't one of his 3 meals a day or mid am/pm cuppas. When I phoned last night she said he'd been calling out for things all day (so make sure you leave everything he needs in reach), and kept asking her to help him to the toilet. When I asked how often he'd done the latter, the reply came 'twice' .

As far as personal care goes, I don't mind face washes, have offered to shave him (he's insisted he's growing a beard ) and do his fingernails and toenails regularly. I don't particularly mind helping him with toileting - it's literally holding him up while he's uses the bottle or gets to the commode/loo, so not 'hands on'.

I have told mum I'm not happy to get involved in anymore on the washing front - I know that seems weird when I'm doing the toilet stuff but it's just not something I'm comfortable with.

Mum is very weird/squeamish about bodily functions (apart from discussing them, which she does all the time ), Dad and I are both much more matter of fact. Tbh I always said if XH hadn't been with me when I had DD I would have chosen my Dad as a birthing partner over my mum!

I googled our local hospice this morning. They are still taking people and do allow visits on a case by case basis when someone is deemed to be in their last few days. All patients are supplied iPads to video call loved ones. I guess if it has to come to that it could be worse, but it's not what I'd choose for him.

Sorry that's such an epic post. It really helps to rant on here and there's lots of small things I've discovered that I wouldn't have known about otherwise (continuing care cropped up on here before it was mentioned to use, and I've now got him on liquid paracetemol).

I chewed my best mate's ear off last night. I think we might be having a socially distanced meet up sometime this week.

I think what you need is the Community Palliative Care team, not the hospice. He doesn't necessarily need to be in the building, but you need the specialist advice from the team that works out and about in people's homes.

Sometimes these are based in the hospice building, and sometimes they aren't. Again sometimes they are called Macmillan and sometimes they aren't. Just to be super confusing.

Your GP would be able to refer your Dad. He doesn't need a confirmed diagnosis to be have this referral.

The issue about infection with a catheter wouldn't be nearly as important now he is so poorly, so do raise it again especially as weeing is a big cause of him being agitated.

And if he is getting in pain when the tablets wear off, just set a rota when your mum has to give him his tablets, whether he is in pain or not to stop him getting into pain and then having to call out.

This is the Community Palliative Care teams bread and butter so you really do need to be seen by them.

Just a word of warning for when the time comes... the funeral arrangements were equally problematic. Mum was equally unable to cope, make decisions, etc, but equally unable to let anyone else get involved. No matter how delicately we tried.

(For anyone who is reading this and think I'm unkind- just bear in mind not all mothers are like your mother. It was beyond painful and hard to deal with.)

Set a rota when your mum has to give him his tablets

But that would involve her having to.go.upstairs and give him his meds again

pickle I'm already bracing myself/prepping for that.

Dad is an atheist and wants to cremated. Mum is a Christian who wants to be buried. I'm pretty certain she'll carry out his wishes re cremation but in terms of the service...

Apparently you can have one which is mixed so I'm looking into that format (I think binging in a hymn - there are some dad likes - and a prayer if it gives mum some comfort is ok) and trying to draft an order of service so when we get there neither of us have to do too much.

If it was down to me and Covid wasn't a thing I'd send him off with an Indian buffet and a jazz band but can't see that washing with mum!

The meds thing was so worrying. She couldn't be relied on to give him his meds because she'd 'read the leaflet and it has side effects' or 'it's an antidepressant, he doesn't need anti depressants' or 'he shouldn't take too many pain killers, they are bad for you'.

She found him so demanding. And he really wasn't.
Is your dad generally the one who runs round after her? I don't think my mum ever really got over the fact that he couldn't look after her any more.

No mum's always been the person who does things and organises.

I think shes just sick and tired of it and wants to be mollycoddled. It's really hard to deal with as she's so capable practically but emotionally she's a jellyfish.

Been back round for half an hour or so and we've already nearly killed each other.

I do feel for you, doing this on top of CV19.

Would she go out for an hour, to sit on a bench looking at a nice view, or for a walk? That was what my mum found hard, that she couldn't get out.

Does he have a hospital bed? And is he more settled at night? Maybe he needs to move downstairs, so she's around him in the day.

minty this sounds awful. Please push community nurse for extra care- hospice at home? You cannot carry on like this. Your dm needs a break but not you providing it.
Please put your energy into facilitating care not providing it.

I am sure they will give him a catheter now.

Also, ask about morphine patches. Dad had those, they last a week, so no meds to think about. He did have liquid morphine to top up if needed, and paracetamol if he got a temperature. I mean, to be brutal, he was dying, it's not like he was going to overdose!

sometimes they are called Macmillan and sometimes they aren't

We found that the hospice at home carers were separate to the MacMillan nurses. We never got anywhere with MacMillan, the carers said they had tried to get MacMillan
involved but couldn't get any support from them (this was when he needed the overnight carer).

My dad was only home a month. He was only really bad for the last week and he died peacefully. It was the most we could hope for. But there were battles along the way - getting him out of hospital, getting the care plan, mum being on her own overnight when he started to get really ill, waiting hours for the DN to sedate him etc. We never actually had a diagnosis to be honest. Noone at any point said he's got x, y or z and xx time to live. Eventually the GP had to come out for something and he told mum it would be "a short month". So dad phoned me to say goodbye and tell me he had a month to live (he had misunderstood what the GP said, but I understood it). I went over about five days later and he died two days after that.
But it was hard not really getting any sensible advice. I found the carers were best for that - they've seen it all before, they know the signs better than medical staff do.

I'm not sure what you can do about your mum. Mine is sort of the opposite, cold and uncaring. She didn't want support, rejects all help and so on.

I found dad was calling out just because he didn't want to be on his own, he was confused and wanted to go for a walk, stretch his legs, go upstairs to bed, he kept saying he wanted to "go home" (apparently people taking about going home, going away, going on holiday etc is a sign that they are near death).

Community Palliative Care Nurses (sometimes Macmillan sometimes not, just to confuse you) give advice on symptoms, how to manage pain, and generally organize things.

They don't do a carers or District Nurses role. So they don't do washing, dressing, rush out to give injections etc. They are highly trained and managing a specialist workload.

Not everywhere has Hospice at Home and it means different things everywhere - from an actual carer or even a nurse from the hospice coming out and supplementing or providing a care package, to just a volunteer coming and sitting so you get a half hour break. And some areas don't have it at all.

I would expect the Community Palliative Care team to sort out Minty's dad's pain control which doesn't sound good, give some emotional support to her mum and Minty, advise on the catheter and look at any other symptoms we aren't aware of.

GP can do this by themselves but often don't do it as well as a team that has been trained to do this and no other job - plus has much longer time to spend with each person.

VanGogh your situation sounds very similar to ours in that we have no formal diagnosis either and therefore can't get Macmillan help.

We were told 5 weeks ago that based on their suspicions and his health at the time it could be a couple of months, and that's looking quite likely I think.

Local hospice was approached about 3 weeks ago and said we're not at the stage where their input is appropriate. Dad has gone downhill since then though.

So after last post dad needed helping to the toilet. He was much worse on his feet than on Friday, so I guess mum may have had a point about her struggles with him yesterday. He's been needing help weighbearing but movement ok.Today he was struggling to put one foot in front of the other and really uncoordinated.

Seemed disorientated, nearly went into the bathroom instead of the loo on the way out and asked where his bedroom was on the way back (it's a bed semi and his room is next door). His speech was also really poor.

Ended up washing him (just face and top half) as he was really hot and sticky and a bit whiffy tbh, changed his top and his bedding, gave him some more paracetamol which he said had helped 'a bit' this morning, and he settled down and had a sleep.

Mum's declined my offer of regular overnighters but I am going to stay over on Thursday. I'll see her the usual days too, but I have decided I am going to prioritise my own jobs before going round rather than going there first and coming home stressed because I gave my own stuff to sort out and I'm tired and cba.

Am going to try and get hold of lovely nurse for a chat on the phone before she visits on Tuesday and will ask about catheter and checking in with hospice again, and might mention morphine patches although mum will probably start up about the medics trying to kill him again!

Thank you all so much for your support - it's (just about) kept me sane over the last few days.

give some emotional support to her mum

That would be absolutely life changing for me at the moment. I find mum so much harder to cope with than dad, who is generally quite happy to have his physical needs taken care of, watch TV, sleep and have a little chat when he's up to it.