Hiya.  Whilst our story isn't related to cancer care, we (or at least my wife does) have a ton of experience going through what you are going through.

Her mum before she passed away had arthritis, was bed bound and prone to falls.  So ended up in hospital what felt like every other week. Because she was bed bound, pneumonia was a real issue with her too.  She was hospitalised a few times with that along with the falls. Her dad also has advanced Parkinson's so he was barely unable to look after himself never mind her mum.

If there's one thing that stood out, it was their pig headedness, and it seemed at the time they were doing everything they could to make it harder for my wife. Like no sooner had she (my wife) put carers in place so her mum could get out of hospital, both her mum and dad cancelled them at the first opportunity, so she was left doing that each and every time her mum went back into hospital.

It was as if they were trying to make my wife's life as difficult as possible. We have a kid and my wife has a full time demanding job, so she really didn't need all this extra burden. But had no choice. When my wife attempted to stand her ground and explain all this, that carers would be a massive help to her, her parents were still having none of it. No idea if it's a pride thing, a generational thing, but whatever it was it was a thankless task.

Her mum died just before the first covid lockdown, so her dad was now alone, with advanced Parkinson's. He was forced to take carers as he was still refusing, but with the new lockdown rules, he had little choice as my wife was no longer able to travel. He should have been in a nursing home for his own safety, but again, and because he was deemed to be in sound mind, he stayed at home on his own with carers coming in 3 times per day. As the pandemic wore on, he began to go downhill too.  Lack of interaction, condition progressing, and eventually social services took it out of his and my wife's hands and forced him into a home as he was no longer deemed to be in sound mind. 

Doesn't answer your questions at all, but you know, I just wanted to let you know you're not alone in feeling how you do, and it is very, very tough at times. There might come a point where you may have to ask for some respite for your own sanity. Even just for a day or 2. If your mum is deemed to be in sound mind, I'm afraid the reality is rather grim, she gets to pick and choose. As for her taking it out on you, it's not really anything personal even though it can damn well feel like that at times. You sound like you're a true champ with what you're coping with. A reluctant one maybe.

Hi Paula,

I'm sorry to say this but your Mum is being completely selfish and unreasonable. This may be down to an undiagnosed Mental Health problem such as depression or dementia, or she may just be reacting badly to the diagnosis which I know from personal experience can be traumatic.

Your Dad's physical health, both your mental health and your marriage are all at risk. There is lots of help out there but only if it is asked for. You and your Dad are now in an impossible situation and need to get some professional help before it is too late for the three of you. Your Mum is obviously fightened and unhappy and you and your Dad are the only available targets for her anger and frustration. She probably hates herself for it but is now stuck in her behaviour pattern with no way out that she can think of.

Please phone MacMillan, Maggies or a local Cancer Support group as soon as possible. Sadly yours isn't an unusual situation and they will be able to advise options to improve it and at the very least listen to you.

Good luck.

Dave

Hello Paulasotired,

                              you have my sympathy for your predicamant,not easy,no end in sight,and no way to influence change.l suspect your mums refusal to use the hospital bed is linked to her non acceptance of her current health and belief that to do so would be an admission that she is on an inevietable downward slope.

       Mums are fighters,they have honed their skills around their family and children,so why are we surprised when the that stubborn determination comes out in later life.Snapping at the one caring for them is the outward sign of the inner truths that eat at them,but they dare not expose for fear of showing the weakness that they now live with constantly.They have lived their life by standing up to every threat and pulling through to the other side,why then would you think they are about to change that after so many years.That change will come is certain,when is uncertain,months,weeks,days?,that will depend on their level inner strength.

 My own mother was a sight to behold,her flag was never at halfmast,her sails were alway fully deployed, even in the biggest of storms,That she had earned her right bringing up her three children and providing for them through 2 broken marriages was never in Question,but always pointed to a traumatic time when her powers started to wane through illness in old age.Eventually she stopped railing against her failing position,but it was only in the last 2 months when we got to share time with the mother we loved ,not the persona she had learnt to project.

We eventually learnt in the final years that although you never stopped giving your best for her,you did stop blaming yourself for thinking you were falling short,realising that the faults were created by her ,not you.By doing so it created a realisation within her that she no longer had scapegoats to hide her issues upon,and she then faced up to and accepted her own issues,able at last not to see them as a weakness within her, but recognise her own strength for accepting them.

l do not know if any of this makes sense or in any way helps,but know you are not alone in this,as hundreds of children are going through the same,and yes its never usually the Grandchildren, the metaphorical  sunday best parlour was always thrown open when they came to visit.

l know how desperately tiring this can become so l hope you can cut yourself some slack and realise that you cannot change everything,and its not your fault when you cannot,

                                                                                                                stay safe in your mind and go forward gently,

                           David

Hi please don’t apologise for ranting, I do it often!  I’m in a similar situation with my mom, she has terminal brain tumour found following a nasty fall and due to her age no treatment has been offered.  The fall caused some brain damage so my mom isn’t fully aware of her diagnosis and thinks she will get better, although we have been told she has 2/3 months.   We have the district nurse visiting weekly but my mom doesn’t understand why and keeps saying she’s fine and doesn’t need them to keep calling!  It’s hard, I understand your struggle but take comfort in that you are doing your very best.  It may not feel like it but you are doing an amazing job so try and stay strong x

Thank you for your kind words, it's tough isn't it.   So much changes and it gets tiring xx I am sending a big hug hope it helps like your kind words have helped me. X 

I will try to get home for a break soon, when my sister is free, but it looks like middle of January before that will happen.  I am in the position where I can work from home and my family are self sufficient. My siblings aren't in that position and have work commitments.  Just how things work out I guess. Thank you for your words of encouragement it is much appreciated x the Hospice team I have been dealing with have been amazing in what help they are prepared to offer, but mum is not comfortable with any one but dad and I x