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.

@User002819532425

I work at a school so I can't choose when I take my leave. When my dad broke his back in 4 places last year. I had a week's dependency leave and they were very good about me having a slightly longer lunch to go and feed him or see consultants, but when I put in a request for reduced hours (2 half days per week, unpaid) for half a term it was refused.

Did her parents die quickly and tidily by any chance?

She lost her Dad in her early teens and her mum at 42. She had a stroke and appeared to be recovering, mum met with a friend for lunch, returned to the hospital and nan had gone.

She has also not worked f/t since marrying and never been a single parent, but hey ho!

Oh well then it's either you with laptop or no you then (or you with no job or money...) :/

And we're in denial again...

"I think he'd get better if only we could bring him downstairs and let him have a walk around the garden."

"Have a look at this sofa bed...this would be good for dad if he comes downstairs..."

"No-one is talking about if he gets better..."

He can't get himself from his bed to the commode 3 inches away without help ffs. We have been told time and again that it's not safe to move him. He is a 12 month end of life NHS funding, with a DNAR and a job lot of end of life meds stashed under the stairs.

The thing is, although Mum's constant musing on the fact that the doctors are wrong and Dad will get better is bloody frustrating, I can see where she's coming from.

When they initally told us a couple of months ago that they thought he didn't have long, they suspected a gastrointestinal cancer of some kind.

We are 8-10 weeks down the road now. He's still eating ok (albeit small portions), still going to the loo ok, thankfully not in any pain beyond his usual back pain so still just on paracetemol, and his blood tests from 10 days ago have come back completely normal.

We have no idea what is going on, and it seems we're in for a longer haul than we first thought. Obviously I don't want to lose my dad, but the thought of this going on for months and months is...well, I just can't think about it.

On the upside he's managed to time his commode trip to fit in with me being here to help, so at least I won't get a phone call from mum in hysterics later.

All the more reason for home to go somewhere for respite!!

Where he can have a wander around the garden etc.

Minty Good to see flashes of your humour in all this
Has the District Nurse been back yet? If you are in for a longer haul than you originally thought, then asking for respite care could be the right thing to do, so you and your mum can recharge your batteries separately in different houses. This might sound awful but if he is in respite care you wouldn't need to visit him every day as he would be being looked after by a team and in a safe environment. Having a period of three or four days away from your parents would help you immensely although you are sounding so much better these past few days if you don't mind me saying.

Does everything she says need an answer?

I find people still just need to talk and some of it is space filler. What do you talk about if you can't do anything and the only prospect is certain death? Well a lot of people still plan their holidays, talk about what they are going to plant in the garden, that kind of thing. Because it's nice stuff to talk about and otherwise everyone would be sitting in silence really.

So if she wants to talk about 'if dad got better we could buy this sofa' you could join in in a very very low energy nod and smile kind of way.

It's better than breaking bad news every single time and just reserve your energy for if she does something really crazy like start buying the sofa or having building works start.

OP, I've been there. And still am. Things went to shit very badly indeed in the Senior Simkin household last year due to DF illness and DM denial.

After years of stress, this is the hard-earned go-to stuff that works:

1. Detach. If your DM insists on making the decisions, then she also has responsibility that comes with the rights. Ie to look after her husband.

1. Detach. But she isn't looking after him. Well, not much. Never forget that you are dealing with someone who is not acting in their DH's best interests, even though she will be broadcasting that she is. I would involve SS a bit more if you can. They might keep an eye re neglect.

1. Detach. She is being fundamentally unreasonable with you. No, you can't do anything about this but you can detach. Stop trying so hard - if you bust a gut to help, and she refuses, stop helping.

1. Detach. DM loves being the centre of attention. She doesn't love treating people eg her next of kin like human beings. She is not acting in your best interests either. Be kind, but withdraw emotionally (I had to do this or go mad, to be honest).

1. Detach. Most annoying advice in the world: a) detach a bit more b) call emergency SS if she does something really awful.

1. Detach. Most useful advice in the world: tell SS you can't take her in and you can't go there every day. They will understand.

1. Detach. Save your energy for the next 15 years, where you will get older and more tired, and she will get older and more demanding.

1. Detach - inheritance. Forget it. Parents who behave like that don't give a fig about seeing you out on the street, and she'll end up in care anyway.

1. Detach. Register with a carer's org so you can let off steam. Do what they advise, which is mostly You Can't Do Anything.

10. Detach. But be really, really pleased with yourself about what you're doing for DF, - You're a DD to be proud of.

District nurse came round today...there is no respite care due to Covid. Just not available even if we wanted it so that's that. She's phoning next week rather than visiting. I think she's trying to detach a bit because we take so much of her time.

Rinse thank you. Last week was absolutely desperate. I can't say as I'm feeling great but I'm not feeling quite so terrible. I have a telephone assessment with counselling service tomorrow and diazepam awaiting collection..rightly or wrongly that all feels like a safety net right now.

Anna no, you probably have a point but...it's really hard not to. She's not talking about if he gets better. It was 'we could try and get him downstairs and if we cant get him back up again he could sleep on the sofa bed'!

Super I'm sorry you've been dealing with all this too. The counselling will help me to detach...I was already having it for something else when dad had his accident last year and it helped a lot.

Mum isn't a monster...just a bit very self obsessed and in denial. I have said today that I will probably have to go back to work at least part time in the next few weeks so we should get some more carers in place. She got a bit shirty at one point ("stop pushing me to get carers so you dont have to come round") I said fine but don't blame me if you if you find yourself stuck and I cant be here.

Anyway, she's going to find out tomorrow about getting the carer who does the Wednesday afternoon 2hrs sesh in at least once, maybe twice more per week, and seems to be coming round to the idea of a short evening carer visit as a next step.

You're right about the inheritance, I'm largely thinking whatever will be, will be on that front tbh. Retirement's a long way off for me anyway. I own my house so can downsize, or move somewhere cheaper when the time comes if needs be. Who knows...I might have found myself a rich toyboy by then anyway !

Day 'off' tomorrow...fingers crossed.

Detaching is really good advice.

She can't get him up on her own, she isn't going to given that she can barely deal with the toiletting.

She is just flailing around because she doesn't like the situation she is in - she needs the extra carers and is coming up with every excuse in the book not to have them. Mainly that you have no boundaries at all and will come round even though you have had no sleep, have to work and she can guilt trip you into doing it. Nice of her to be rude to you about not coming round, she has no idea!

Same as her 'maybe he'll get better' - I think she knows full well that he won't. she just doesn't like it. So she likes to talk about the doctors being wrong, dragging him out of bed, walking round the garden. A full none of this is going to happen and if push can to shove, she knows it.

Really really try to practice not rising to her - a lot of 'hmm' and 'I dare say' and any kind of conversation about the weather. Try to establish what your boundaries are - for example if you have to go round with your laptop and finish some work and stick to them. If she pushes back, you can always leave.

Things sound a little better, that's good to hear.

I wrote to my parents' MP about the lack of care package available. Fat lot of use it did (she suggested I 'ask the GP', as if I'd ask the MP before the GP!) but I also wrote to the MP for the area dad was in hospital and he was a bit more use, he did at least get the hospital CEO to look into the matter, though by then mum had agreed to half the care package that was originally assessed as being needed. Oh well, at least he came home.
I copied Matt Hancock too.

I think, whether they help or not, it's worth letting them know about lack of care/respite/funding - they surely cannot go on ignoring it forever!?

We had my dad's online funeral today, I'm leaving mum on her own (after coming to stay six weeks ago - and in that time she has not even made me a single cup of tea) next weekend, and I am looking forward to some headspace and recuperation. I have online counselling starting 10th! There is so much I need to process!

Anyway, do look after yourself, don't underestimate how hard it is and how much you are dealing with.

Sorry to hear about the difficulties some of you are having. There's some great advice on here which I'm going to use myself (love the one about the bingo - I use that myself sometimes when dealing with certain family members).

VanGogh you've been staying with your mum for 6 weeks???!!

I hope the funeral today was of some help to you both, it must have been really tough having to do it remotely.

Sending hugs and hoping that over the next few days and when you get home you can have some proper down time, taking care of and indulging yourself a bit.

Yeah, I arrived on 24th April (after a month of full isolation), dad died 27th, early hours.

I had assumed I'd be here two weeks or so, but it was three weeks to the cremation. Then mum needs help with finances and admin. She can't get out much, she's pretty immobile and doesn't drive, so I have no idea how she thinks she will feed herself. But I'm leaving her to it, if she insists on living in such a stupid place, she has to figure out how to make it work. I'm trying to get some things set up for her but she's very contrary.

I'll come back in two weeks. I do actually have two siblings but they are both useless in different ways.

The online funeral was very moving, we were so lucky to find a lovely friend of mine who was happy to pull it all together for us.

Glad it went as well as these things can.

I managed a 'day off' yesterday although was wfh on and off until about 6pm. Going round at 3pm today and staying over.

I am starting to discover that it works best if I tell her what I'm doing on a day by day basis rather than try and get any sort of routine in place. I thought routine would work work better for her, but I think she sees it as me trying to control the situation a bit too much and automatically gets defensive.

Had my counselling assessment yesterday and they've signposted me to local carers support group. I'm a bit sceptical about how much use it will be but will have a look at their website when I get a few minutes.

I'm going to give mum a bit of TLC this evening. I think I've been so wrapped up in my own stress and resentment of her inability to cope with anything I've probably been a bit oblivious to her needs.

Well Thursday night and Friday went ok as far as mum goes but Dad was all over the place.

Had to feed him on Friday night as he's started having double vision on top of the general decline in hand/eye coordination. Its only been that bad a couple of times but I guess it will become a more regular thing.

He settled down at 9.30, but called out several times over the next 90 minutes, first he'd got half out of his inco pants, then half out of his top as he was too hot, then he was just generally confused and unsettled.

Woke up yesterday to discover the bed was soaked. Not sure if he'd got out of pants again (seems to be a not infrequent occurrence) or if they'd leaked as he's so thin. So full change of him and bed before the carer arrived.

She was fabulous and may have convinced them to have a rethink about the Convene.

Had loads of wfh to do yesterday but needed to stay and talk to mum about increasing carers so eventually left at 4pm having spent 8 hours juggling spreadsheets and mail merges with seeing to dad's toileting needs and random call outs.

Had an ok evening then phoned mum at 10 to say goodnight and she was in a state of distress thinking she might be having a heart attack but 'didn't want to bother me'. She didn't want to call 111 or 999 so I stayed at home and made a couple of check ins before going to bed. Eventually got to sleep at gone 3am having had to resort to diazepam.

Called this morning, no answer. Just about to head round when mum called me back to let me know that 'well we're no okay but we are both still alive'.

My anxiety levels are through the roof, I feel like I've been having a panic attack for the last 24 hours. Had counselling assessment by phone on Weds morning and they've 'signposted me' to the local carers support organisation. Apparently being having suicidal thoughts*, mild self-harming and drinking 3x as much wine as usual doesn't require their intervention .

I suppose I will give them a call but I don't hold out much hope regarding what they can do.

*suicidal as in "really what's the point...this isn't 'living' and wont be for the foreseeable future". I would never actually do anything, my DD means far too much for me to put her through that.

To me it's clear that your Mum said that as emotional blackmail and to get the attention all back on her...

Do you ring her every evening?

Every evening...3 times a day if I'm not visiting.

Tbf, she has had a heart attack 2.5 years ago and missed follow up appointments last year, partly due to the issues with Dad and partly because it involved a procedure that she was frightened of having.

I know how she sounds when she's being manipulative and she was genuinely distressed last night.

I think the chances of either of having a heart attack are probably about 50/50 at the mo.

Honestly I cannot say how grateful I am for this thread and everyone posting on it at the moment. Just being able to offload honestly to people who 'get it' and don't judge makes such a difference.

I think you need to cut back, ask your Mum to call you every morning??? Just put some of the responsibility back on her?

Speak to her about the heart issue "next time you feel like you MUST call 111, it's cruel to say that to me whilst refusing to seek medical advice"

MH services are pretty shit, funding has been massively cut over the last 20 years... can you afford to pay privately? Many therapists offer reduced rates if you cannot afford full?

The phoning 3 times per day means they are constantly in your thoughts, no wonder you are so stressed!!!

Definitely need to insist on more carers going in so you can take a mental step back.

minty this all sounds so difficult. Sorry counselling assessment wasn’t helpful. Please try the carers group- they may be able to offer support to you and your mum.
This could be a very long haul. Are you on anxiety meds? Worth a gp appointment.
Does the hospice offer any emotional support? You must find a way to share the responsibility. You have mentioned dm friend- could they do more listening?
🌺🌺

I'm on a very low dose of Cipramil (AD which is supposed to help with anxiety). I could increase it but would rather not if possible. I have a small dose of diazepam for back up if it gets really bad.

I'll give the Carers group a try - no harm in finding out more and they do offer counselling.

The phoning 3 times per day means they are constantly in your thoughts, no wonder you are so stressed!!!

Yep, I think it's the constant 'in-my-head-ness' of the situation that is causing a lot of the stress and anxiety rather than the actuality of it iykwim.

We are going to talk tomorrow about getting some more carers in place as I have told mum I will probably be going to back in to work for a couple of days a week shortly.

The one we had come in yesterday was really, really good. She had a chat with mum about some of the other caring jobs she does and I think it's given mum a bit more confidence about using them for more than just a quick half hour wash and check up kind of visit.

Is there a reason you don't want to increase the Citalopram? Because this sounds like a lot better idea than relying on short term prescriptions of diazepam to get you through, and potentially ending up relying on diazepam. Citalopram is a much much better option than the diazepam.

Am crossing my fingers that you get more carers in place - if there are carers coming 4x a day then those are checks for both mum and dad, no need for her to ring you 3x a day to tell you she is alive as the carers would let you know if there was a real problem. You could then just get on with your day with one phone call in the evening hopeful

To be completely honest (and I know it sounds a bit la-la), I don't want to increase my Cipramil because I'm worried it will interfere with my hobby.

I write in my spare time, even now I'm squeezing in as much as I can around everything else, and it does more for my anxiety and improves my mood more than anything else.

On the days I'm able to get a few hours writing in, complete a chapter of one of my WIPs, post something online I'm like a different person mental health wise. It's just carving out the time and brain space.

My worst anxiety attacks/melt downs happen when I can't write.

Why would ADs interfere with writing?

I think being back to work a couple of days will help you, give you more structure.

Does your employer have an employee assistance programme? If your school is LA run it should do, they can usually provide a number of counselling appointments free, usually six but sometimes more.
Or, if you are in a union, ask them. Lots of organisations have brought in this sort of support recently, for me even my professional body has!

Have you experience of citalopram affecting your writing?
I understand your reluctance, but with so much s#£& going on it might help you. And help you make time for writing.