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.

Does anyone else find that the already not brilliant resources for olds/carers have deteriorated further since Covid?

I am wondering about writing a feature on it and seeing if I can get it in the national press.

Good to hear you got some writing done and posted.
I think you are on to something.....a piece about support for oldies, impact of access/ perceived unavailability/ fear and impact on the carers.... might be a good outlet for you too.

I'm actually starting to get angry about it now rather than just feeling utterly despair.

I actually videoed my dad today...absolutely hated doing it, but how many other people are in the same boat?

Awareness needs raising of how our elderly people and our carers are being failed, and although the pandemic has no doubt made it worse, I bet a lot of this was going of previously. Susoect the difference is that pre-Covid charities and community groups were picking up a lot of the slack which is no longer possible.

I'm also going to be looking into pressure groups that campaign for euthanasia to be legalised...you wouldn't let an animal exist in the condition my dad is in. It's heartbreaking and so, so wrong.

So pleased your written piece was well received - that must have given you a very big boost.

Care in the community of the elderly, infirm and disabled has always been under-funded and has always depended upon family - always.

Sorry if I sound like a stuck record but if someone has a relative, neighbour, distant cousin, former work colleague whose willing at first to go in a make a cup of tea once a fortnight - the statutory services will disappear faster then you can dial 999. The situation was bad before Covid - now well sadly you are seeing the appalling situation. Your parents would be much better off if you spent to same amount of time on the phone to GPS, social services, local charities etc that you spend at their house.

That's why I have been saying from the beginning to step away. It's harsh but it's the only way to get any support.

I feel your anger. Use it positively. Step away from direct care and start a campaign to get your dad the care he needs.

I'm also going to be looking into pressure groups that campaign for euthanasia to be legalised...you wouldn't let an animal exist in the condition my dad is in. It's heartbreaking and so, so wrong.

I really understand this, and would further support the decriminalisation of assisted suicide - ie that anyone who is kind enough to help a person willingly leave this world painlessly, peacefully and professionally shouldn't be prosecuted.

I'm so sorry you're going through this, OP

Care for the elderly has always been awful & is pretty much non existent since covid.

If there is anyone at all to do anything, social care is removed. Please for your own sake & your daughters, step back. Only your mum can decide to pay for more care & you

Flora's voice on fb is a group campaigning for end of life

I'm also going to be looking into pressure groups that campaign for euthanasia to be legalised...you wouldn't let an animal exist in the condition my dad is in.

Agreed. Trouble is, any move is likely to be limited to those suffering physical pain and having less than 6 months to live. It seems to me more inhumane to leave someone to suffer for 5 years than for 6 months; and mental pain is as important.

It seems to me more inhumane to leave someone to suffer for 5 years than for 6 months; and mental pain is as important.

Exactly.

GP actually came out to day in person today .

He's going to prescribe some kind of benzodiazepines for when dad gets agitated but otherwise there is nothing they can do...we just have to get on with it. He's not 'unwell' as such, there's no point having more carers in as his needs can't be timed, if he goes into a care home we'll be unable to see him and in GPs opinion he would be at higher rick of Covid (our county is only getting the first roll out of vaccines this week).

He did give us both a lecture on taking care of ourselves although I doubt how much of that has sank in with mum.

On a cheerier note, dad was on form for a bit requested a chicken wrap for lunch (God knows why, I don't think mum has ever made him one in her life and I haven't for about 3 years at least). In the end he had blue brie with brown bread, Christmas cake and cuppa and we watched a wildlife video together.

I'm taking him round a chicken wrap for lunch tomorrow, and a portion of tonight's duck stir fry for his dinner.

I actually love looking after dad for the most part, it's all the other crap around it and coping with mum that drives me up the wall.

Totally agree re euthanasia

I hope the benzos will help. Different situation but when my dad had cancer, the doctors refused to admit he was dying till about 15 hours before he died, so I had to aggressively request tranx. The nurses backed me up, bless them.

@mintyCedric
Look up Dignity in Dying . They are a group who are very pro choice. They inform you of the latest information / UK stance on the subject.
I've emailed my local MP a few times at their request for him to attend a meeting in the House of Commons. Both times I've received a letter saying he was at another so unable to attend.

@RuthTopp that's who I've signed up for emails with and am following on FB.

Is your MP generally a bit crap?

Yes he definitely falls into the ' a bit crap ' group l

Hi @MintyCedric... just checking in on you to see how things are for you this week.

I was also wondering how you are @MintyCedric

How are you doing? @MintyCedric

I'm also going to be looking into pressure groups that campaign for euthanasia to be legalised...you wouldn't let an animal exist in the condition my dad is in. It's heartbreaking and so, so wrong.

@MintyCedric. This is a good pressure group

www.dignityindying.org.uk

This is its sister organisation

compassionindying.org.uk/making-decisions-and-planning-your-care/

Hope you're okay @MintyCedric
Have been reading/ lurking from the beginning.

@MintyCedric oh Minty I lost this thread. I hope you are as well as can be under the circumstances.