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.

I don’t think there will be a whole lot of visiting allowed. It may be that only one named person can see your DF from a distance. So if the first person to visit is your DM it might always be your DM until the rules move on. However, your chatty writing talent will mean you can write regular letters to your DF which he will really appreciate. When my DF was hospitalised and before my DM was sectioned and still at my house I wrote a couple of letters. My DF knew every word of my news and asked me about how things had moved on when I eventually got to see him. Their generation is better used to receiving letters.

Thanks all.

Ambulance out for Dad this morning as having severe stomach pain. All his vitals OK and given oramorph which seemed to help. Call logged with palliative care team.

What with that and the rising Covid rate who knows if he'll even get to the care home.

They are allowing visiting in rooms (with masks) and the garden at the moment, but not indoor communal areas. Dad is absolutely clueless with technology so letters are a marvellous idea.

I'm trying to get two days off together now and a third day each week. Have pointed out to mum that there's no point her getting used to me being around every five minutes as come September it just won't be happening.

Haven't managed it this week due to various appointments and crises, but hopefully will be more manageable going forward.

It's difficult in terms of friends. About 2/3's of their friends have passed away and most of the remainder aren't local. Of those they are mostly slightly younger so still either working or helping care for grandkids. There's no-one really 'free' that I feel I could ask for support.

Minty I’d take to your local FB or what’s app neighbourhood team and ask if anyone can befriend your mum for a few distanced garden visits in the coming weeks. There are still lots of people willing to do a very good turn who would rally round. Obviously you have to have a nod to safety/ not giving away her address in your post etc but there’s probably someone ages with her who would step forward. However, I live in a street with 133 houses so it’s easy for me to say it’s possible ...
Hope the ambulance visit wasn’t too unsettling

Rinse she won't want to be meeting with strangers. I will suggest she keeps the companion carer in place and see if I can encourage to try and round anyone else up when we have date.

The most unsettling thing this morning was that I only realised when I woke up, checked my phone and had 7 missed calls. I'd switched the volume off by accident last night and didnt hear the landline from the ground floor and two closed doors away.

In one of your free moments (as if) have a look to see if her local WI is still meeting virtually. You can put in your postcode and see where and when they meet. Obviously they are not meeting in person at the moment but some are still meeting online.

Distant friends can still ring for a chat, it's someone different to talk to. Just because she doesn't have a lot of friends doesn't mean that it has to stay that way. If she's been an organiser then there will be many places desperate for a new face on the committee. We're all in limbo at the moment but we won't be isolating forever. It will be really easy to drift into a new way of life that revolves around you but that's not good for you, your mum or your daughter. I am a widow and it is bloody hard taking those first steps on your own and being on your own but I am determined not to cling onto my son in the way that my mother clung on to me. I've seen the result of that for her and for me. You deserve a life of your own rather than existing to fulfil someone else's needs.

I cannot hear the phone between 10.30 and 7.30. The mobile switches to silent and I can't hear the house phone from upstairs. I need my sleep but I can have random misdials up to 2am as mum tries to use the phone as a tv remote and I get silly cat memes from my son at all hours. "But what if there's an emergency?" Anyone calling me can dial 999 or use their adult skills to get out of whatever mess they got themselves into. A genuine emergency will result in police at the door and I'll hear that.

We're back again waiting for another ambulance as he's in bad pain again, although by the time I got here the oramorph mum gave him seems to have kicked in. She hadnt given him any since seven this morning (until gone 4pm) because he hadn't been in pain. Told her the whole point was to five it regularly so that doesn't happen.

Anyway she called the palliative care, they are sending community nurse and am ambulance although we are looking at a 2 hour wait.

I have no idea how I'm going to cope with everything if this is it. What am I going to do with mum? I can't stay here indefinitely but I can't leave her on her own and can't really have her to stay with us. Spare room is an office and there's no room for a bed in there.

I know she'll have to get used to it at some stage but initially she'll need someone with her. How long do you provide that kind of support to someone? I was tiny when we lost my nans, both of whom were on their own. I have no frame of reference for any of this.

When my dad died we had mum here for a couple of days but she wanted to be in her own home. Everybody is different, what other people do/have done isn't all that relevant to your own situation. At some point she will need to be there on her own but it is her own house, a familiar and safe place.

But this might not be it, you are worrying about something that's not happened. When/if it does happen then you will cope, you will get through it just like you've got through the rest of it so far - one minute at a time.

Your Mum will be fine on her own in her home, she can come around to yours during the day but go home. She will have a new normal, she's always known this is coming she is a capable independent adult and she will get through it.

You need to get out of this mindset of fixing everything for her, that has never been your responsibility it's something she has spent your lifetime making you believe.

Your responsibility is to your DD including working to provide for her. Your Mum is not helpless she just wants to not take responsibility for herself.

Agree withknot and random
You are not responsible for your mothers happiness. Your dad needs care, your mum does not.
You are responsible for your own and being a role model for your dd.

If this is it minty each and everyone who reads your thread but who may not comment will step up and be around for you. You have a squad across the country in your corner who have empathy for your situation, even if it’s different to our own. You are funny and absolutely a brilliant daughter.

I've been thinking about you and I came back to find that Random had said exactly what I was going to say. It is not your responsibility to fix your mum's life, or anyone else's come to that (daughter and cat excluded)

Imagine that this was a friend whose husband had suddenly upped and left - you'd be there for them, console them, listen to them but you wouldn't be moving in to get them through it. It's a hard situation but you would expect them to stagger on through, do what needed to be done and start over. We take over for children and people who are incapable of looking after themselves but we would expect adults to be in control of their own lives.

I have a helpless relative and it is exactly what Random said, they are not helpless but unwilling to take on any responsibility for themselves. There may be jobs that your dad has always done that your mum won't know how to do (my mother had never put petrol in the car as it was always magically refuelled) but she can learn.

New to your thread. When my dad dies very unexpectedly I stayed at theirs for a few night but then mum sent me home. She said she had to get used to her new normal. I think that worked for both of us tbh.
But with your mum I think you have to be very careful not to be pulled in. Set your boundaries.
Tbh, if your dads not there she's a compus mentis adult, she does have a few issues but ask if her if she'd prefer to live at home, or move into sheltered accommodation. Remember this is her decision, thing to do with how it will affect you because you have your boundaries already in place. Ie after work on Wednesday and tea on a Sunday etc. Any heart attack problems are met with, "right that sounds awful I'll ring 999 now"

Well, DD and I are both staying over tonight as Dad really doesn't seem good. He's mostly sleeping,not really responsive and is coughing a lot which is a new thing. No temp or other dubious symptoms and I suspect it might be an end stage thing.

Community nurses came out and were lovely. They gave him a morphine injection from the hardcore drugs stash under the stairs and said he could also have oramorph. I gave him a small dose about an hour later as he was still in pain but seems a bit more settled now.

The are going to to try and raise a response from the local hospice (again) as feel we need more support (no shit!).
Haven't been able to get his usual tablets down him. Managed one warfarin but it took 3 goes and he couldnt manage any more.

DD reminded me that when he was in hospital last year for 7 weeks we didnt stay over at all and mum managed. The frustrating thing is that she is very, very capable practically, but emotionally she's a jellyfish.

Anyway, hopefully all will go okay overnight and I will manage to escape early doors tomorrow and get back home for a day of R & R.

Thanks all so much for your lovely messages and support.

Thinking of you all Minty

I'm not so's sure your Mum is an emotional jellyfish, much more like an emotional vampire which is why you need to have solid boundaries

Vampire jellyfish?!

Woken up at 5.45 to mum virtually screaming in pain with the severe night cramp she gets in her leg.

Managed a bit more sleep after she'd gotten over that and dad is still with us so I guess it's about as good as it gets this morning.

Hoping to escape back home for the day in an hour or two.

Sending 🌺🌺🌺.

Hi minty, how are you all. I hope your dad is comfortable and not unsettled by pain. Do they know what is causing the pain. Thinking of you, you have been a brilliant daughter to your dad and writing here you can feel the lovely relationship you have. Xxxx

Thanks all.

Dad has rallied a bit. No more pain issues and is more alert and eating a bit. Speech poor and stressing about the loo again.

Community nurse called today having heard about Friday and she has finally managed to get the local hospice team on board to step in when the time comes. Hopefully he'll have his Covid test in the next couple of days and we can fix a date for him to transfer to the respite home, assuming no further deterioration.

As to what's causing the pain...who knows? He's too week for diagnostic testing so it could be symptomatic of the suspected gastrointestinal cancer, or it could just be severe trapped wind.

The constant ups and downs are tough, as I'm sure many of you are well aware. I found myself having a panic attack before I went round there this morning.

Have a nice week planned. Hoping to get Tuesday/Wednesday and Saturday off and have no less than 3 (small) social events planned which is more than usual for me on a normal week in the summer hols!

Fingers crossed all goes to plan.

Fingers crossed for you, but remember when the time comes, your dad is at rest. You and your mum deserve some calm, if it's not to be found together then some distance is fine too. Be careful about committing to too much support for her. You'll both be grieving. And to be honest, no matter what you do I don't think you'll be able to make her happy, even if you moved in she'd still find something to be annoyed about.
Sending peace

if your dad likes prune juice - use that to get him to swallow tablets, its good for getting them down and obviously good for constipation

Even if you moved in she'd still find something to be annoyed about.

I lived with her for nearly 2 years after my marriage broke down...we were constantly annoying each another which is why although I'm very grateful I've no desire to do it again.

Prune juice is a great idea.

Dad's still plodding along. His Covid test came back negative this morning after a bit of a palaver and several phone calls because mum had failed to register the pack online!

Just have to wait to hear about dates and transport now.

Mum is being really difficult. Saw them Monday afternoon for a coffee then didn't come back round until 4pm yesterday for overnight so whether that's a factor...

Mum has hurt her knee and is making an enormous fuss every time she has to move. She has just decided to call the GP so I'll no doubt be back taxiing her around later.

She is still not willing to consider dad staying longer at care home on ground of finance. She has offered to top up my income if was to jack in my job and claim carers allowance, but although it's tempting (job is both boring and stressful and managers not very accommodating) I know if I did that there would be no enforceable boundaries with her, so will stand my ground.

DD has been having a rough time with her dad, who prior to that was away on a camping holiday. I literally can't remember the last time I had the house to myself and its driving me insane.

There's a possibility I could get two days and nights together next week but I can just see it coinciding with Dad being transferred and mum having a bloody nervous breakdown.

And stupidly hot weather and hay-fever and bleeuurrrgh!

Am fine really, just needed to rant!

She's being an absolute cow to the GP's receptionist now...

So she can afford to pay your salary but can't keep your dad in home?
So after your dad dies will she cover your salary until you got a job?
Keep those boundaries!
You're doing a great job x