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Original poster

Dad dying, how to cope with Mum

819 replies

MintyCedric · 28/04/2020 23:35

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.

OP posts:
forrestgreen · 14/08/2020 14:32

Is there anyone else, her friend perhaps, who can see how much better he is.
Basically you will be wrong because you're not agreeing, maybe a third party can shame her into it.

Remember she wants him home so you will be too, control!

Original poster
MintyCedric · 14/08/2020 14:19

Oh and me and mum are to go in on Monday to discuss it all with both senior nurses.

I will be needing all the wine.

OP posts:
Original poster
MintyCedric · 14/08/2020 14:17

Oh FGS!

I've had the (nice) senior nurse at the home on to me. All the 'powers that be' were anticipating dad's respite stay becoming permanent but of course mum is still fairly adamant that she wants him home at the end of the two weeks.

They need us to make a decision by Tuesday at the latest, but mum has been such hard work.

Nice nurse has complained about mum being rude to her on the phone this morning. I was there, wouldn't say she was rude to her personally but definitely fairly obstreperous.

She just can't accept that dad can't be fixed, I have no idea how I can make her see/accept this which she needs to do in order to make a decision.

They think dad might qualify for full CHC funding due to his condition, which is one less concern, but looks like in for a hell of few days ahead.

OP posts:
flygirl767 · 12/08/2020 19:24

Hi MInty I think it is pretty normal for new patients to take a while to settle in. I'm sure he will settle soon and start joining in with some activities. It sounds marvelous!

It sounds like it was miscommunication, however considering most homes won't let more than one person visit at a time and then only once a fortnight, I think they are pretty easy going on that front!

Glad your mum is calming down and she had some pleasant things to say, it must be a comfort to you. Take care x

Original poster
MintyCedric · 12/08/2020 19:15

Yeah I'm communicating with the staff, they know I'm aware of mum's shenanigans and supportive of them.

I spent a couple of hours with mum today and she was a very different person without the constantly being on edge because of dad needing care.

She was a bit wobbly but said some lovely things about him which was nice to hear as it seemed completely genuine. They have never been love's young dream but there is a lot of affection and a huge amount of respect there underneath all the stress and it was comforting to see that.

OP posts:
forrestgreen · 12/08/2020 18:39

Aww he sounds like he's going to do just fine there.
When mum brings up each issue shoot her down straight away, don't let her get away with it.
The nurse was rude - I found her straight talking and busy but not rude
Dad wasn't happy - when I went he was the most relaxed I've seen in a long time, we had a lovely chat.

She will continue to find fault, basically wanting him and therefore you at home. So don't forget to communicate that with the staff, that you're really happy with how dad is but mums struggling with the change.

Original poster
MintyCedric · 12/08/2020 18:03

You know now that she's not a reliable witness and to take what she says with a pinch of salt

Oh absolutely, I'm well aware of that. It's why I try and be around if either of them have medical appointments etc.

When we went on Monday we mentioned to nurse 1 about family friends bringing mum in and her response was 'well we can't really have that because of space and distancing but...' very much implied (I was there) that they would overlook it the once but don't do it again.

When they turned up, nurse 2 was 'absolutely not' which of course threw mum right off. She then insisted on all sorts of signing in procedures, most of which I'd dealt with the previous day so mum wasn't expecting.

No excuse for mum throwing a wobbly but there was definitely a bit of miscommunication on their part too.

Dad did look sweet. They brought him out a straw boater to wear and we sat next to the lovely koi pond overlooking the fields and woods we used to walk in when I was kid. He did say it was a very relaxing spot Smile.

OP posts:
Original poster
MintyCedric · 12/08/2020 17:54

If I'm honest he wasn't exactly full of the joys of spring today, but it's still a period of adjustment. I'm just much more patient and able to coax him into doing things than most!

Once we were out in the garden he asked me how my life was and if I had a boyfriend at the moment chance would be a fine thing!

From what nurse and friend said (and speaking to her this morning) it's clear mum is still very much in denial. She seems to have a dip in that respect every time a major change occurs.

I met the nurse mum locked horns with today and she has a manner about her that I can imagine might well have put mum's back up - much more old school matron than the one we've dealt with so far, but y'know that's not necessarily a bad thing and certainly doesn't justify mum going off on one.

I was impressed that she made a point of coming out and introducing herself and also spoke to both owners while I were there. They are really lovely, as was the carer who did dad's transfer and was keeping an eye on him.while we were in the garden.

They were having a boat race themed tea party this afternoon, but he didn't fancy that!

OP posts:
Knotaknitter · 12/08/2020 17:42

You know now that she's not a reliable witness and to take what she says with a pinch of salt. It's good that she didn't go on her own because you've another viewpoint on what happened. I hope everyone is having a break because that is what respite is there for.

This is all about what your dad needs, your mum will get a turn in the spotlight but right now, it's not about her. I like the image of your dad in the garden with his sunhat and an iced water, waiting for the delivery of his lunch. That has to be more fun than being in bed at home.

RandomMess · 12/08/2020 17:32

So lots more manipulation by your Mum....

Seems that your Dad will be much better cared for in there tbh. He'll get peace from your Mum and the actual care he needs.

Original poster
MintyCedric · 12/08/2020 17:16

@forrestgreen1

Mum visited yesterday and called me afterwards insisting dad was distressed and unhappy and saying that the nurse of duty had been rude stroppy and unhelpful.

In actual fact it turns out mum took an instant dislike to the nurse, was annoyed because they wouldn't allow both her friends (husband and wife) to visit dad with her (tbf this was a slight miscommunication on their part) and was quite rude and stroppy.

She harangued my dad about getting out of bed and making more effort and gave the staff the impression that she thought they weren't trying hard enough to 'fix him' which of course is not why he's there.

Friend said nurse was lovely and just doing her job and dad seemed OK to her and her DH (they've visited once or twice since he's been bedridden so know how he usually is).

OP posts:
Mischance · 12/08/2020 16:51

Ifonlyiweretaller - at peace now.

forrestgreen · 12/08/2020 16:40

What happened when your mum visited

Original poster
MintyCedric · 12/08/2020 15:45

@Ifonlyiweretaller I'm so sorry for your loss, and thanks for your post last night. I hope you and your family are taking care of one another Flowers.

@Mischance thanks for your post. It's really good to hear about it from a different perspective.

I've spoken to nurse at care home and the friend that went with mum yesterday so I have a clearer picture which is much as I suspected. Visited Dad and he agreed to them hoisting him into a chair and we sat in the garden for a bit and had a chat. Left him there with a glass of ice water and a sunhat awaiting delivery of his lunch.

Mum much happier having seen pic of him in garden. Taking her in for a visit tomorrow late morning.

Rest of the afternoon/evening free now. Don't know what to do with myself!

OP posts:
thesandwich · 12/08/2020 13:29

ifonly I am so sorry but glad he is at peace. You have done so much. 🌺🌺🌺

forrestgreen · 12/08/2020 12:08

So sorry @Ifonlyiweretaller

ineedaholidaynow · 12/08/2020 10:55

@Ifonlyiweretaller I am so sorry Flowers

Ifonlyiweretaller · 12/08/2020 10:46

Sadly my dad passed away at 2.15 this morning. I was with him, sitting by his bedside, and he went quite peacefully as the drugs had managed to keep him settled. It is a blessing really, for him, and for us as a family. RIP my lovely dad ❤️

Mischance · 12/08/2020 09:01

Ifonlyiweretaller - my OH had a hospital bed (free from NHS) at home and we could put the sides up for safety.

I am sorry you are facing these challenges.

Ifonlyiweretaller · 11/08/2020 21:41

What a wise post @Mischance. I have followed this from the beginning as we are also battling through the care system as my dad has rapidly deteriorated after a UTI 5 weeks ago, to being put on end of life care. It is heartbreaking to see him a shadow of his former self in such a short time.

Because we are a big, close family I do feel that we have been "left to it" to some degree - after his dreadful hospital stay we promised we'd never make him go back in, however that's made it very tough for us. We do get 2 carers 4 times a day, and District nurses come out to him at the drop of a hat, but two of us still have to be with him all day & night as he gets really agitated and is difficult to manage if he tries to get out of bed. It's the nights that are hardest though. We got Marie Curie overnight carers for a couple of nights last week which we had understood to be a regular thing, but apparently not. We are all reaching burnout now as we have our own families to care for and jobs to do.
My mum is quite stoic but I know she will go to pieces when the inevitable happens. I just hope she is like you @Mischance and tries to move on and make a life for herself. She is very capable, but I wonder if we've not helped ourselves by being so available at all times.

I really feel for anyone in this awful position right now, it's heartbreaking and exhausting.

forrestgreen · 11/08/2020 19:27

Can you ask the friend how he was

forrestgreen · 11/08/2020 19:27

She might be projecting, if she goes in the room all upset it's bound to affect your dad. Go in tomorrow all chipper with lots to tell him and you'll be able to tell how he feels when he relaxes.

Mischance · 11/08/2020 17:56

I beg your pardon for not having clocked that your Dad is in a home now when I made my first post.

Mischance · 11/08/2020 17:53

By the way - my OH had to go into a nursing home at the end, and it was an opportunity for us to enjoy time with him without the major responsibilities (and yes, burden) of his care.

Mischance · 11/08/2020 17:51

It is hard. I would not describe myself as elderly, but am retired, and my OH died in February after some difficult years, and a very difficult last year.

The business of getting him the proper care and support he needed was truly exhausting and very dispiriting, so I can understand why your Mum is switching off a bit. For me, it was honestly worse and more of a stress than the actual help I needed to give OH myself.

I do think that you need to establish some lines in the sand with the care agencies/SSD/health authority, or they will expect you to do things that should not be your role. You are already providing some personal care; and spending a huge amount of time there to the detriment of your own family. They need to know what you can and can't do.

Like you, my DDs wanted to do all the right things and be of help, whilst also grieving themselves the imminent loss of their Dad.

But you cannot protect your Mum totally from the distress of the situation or of the weeks to come. I know that my girls worried about me, but I really did not want them to put their own lives on hold.

My DDs are there at the end of a phone now and I see them as much as is possible commensurate with them getting on with their lives and with the whole coronavirus debacle. In the first few weeks when I was overcome with sadness (and guilt; as I had had to take the decision to let him go rather than seek aggressive treatment when he got pneumonia) they popped round a lot; listened to my woes and calmed me. But that had to stop. It cannot go on and on; as I need to build a new life and face a new phase living by myself.

So - please do not try to be all tings to both of them - you will make yourself exhausted and unwell, and |I am sure that neither of your parents want that.

I am sending you a hug and lots of good wishes - I know what a difficult time this is, but it is the cycle of life - we are here for a bit and then we go. Stay strong.

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