Caring for terminally I’ll mother- need advice

[stressed-out1223]

Hi,
Thanks for letting me join.
My mother is 64 and has been diagnosed with a relapse endometrial cancer. She has mets in lungs and in abdominal cavity. Initially had hormone treatment, the half a cycle of palliative chemotherapy before they repeated ct scan. This showed that tumour had went through pelvis into hip joint and is at risk from fracture which would be catastrophic ( would never heal with everything else law going on). I’m so frustrated by the length of time everything takes!!
It was three weeks from finding this to meeting oncologist. In the meantime mum couldn’t return home and is now living with me, my husband and 3 kids (6,3,1). She can no longer manage stairs so we have had to make a bedroom downstairs, hubby has lost his office ( still files and stuff in there but the best we could do in short time.) although we have done this, it’s not enough for my 2 sisters- they couldn’t take her in because didn’t have space on ground floor and they couldn’t take time off work. I work but have had to go sick to care for her.

The main issue is we don’t have a bathroom downstairs, we have space just haven’t had the funds or time to do so. As mum can’t use the stairs due to being partial weight bearing this is a major problem. Currently we have a commode and washing in a basin, hair in the kitchen sink. A month ago today I contacted social work for help, today we get a visit from OT who didn’t think it was that much of an issue.

Mum is currently taking 40+ medications a day, needs insulin injections x2 a day, help with washing/ dressing/ toileting/ dressing changes on pressure areas/ help to stand up- move as well as me trying to keep a house clean and my children fed. I’m exhausted!! There doesn’t seem to be any rush to do anything to help from social work.

The OT said it would be months before they would be able to fit a bathroom but I’m not sure how long they can expect us to do what we are currently. Surely everyone has a right to dignity and toilet facilities??

Maybe I’m expecting too much, but part of me thinks it would be cheaper to fit one than put her into care services ( I don’t think I could even do this!)

The issue is we don’t know how long she has left, it may not be too long but there must be some help out there for these circumstances

[Breezey]

Hi Simone

So sorry for your mothers condition, an awful shock for you all.

Edited. Deleted because you have now revealed you are a nurse so all of what I typed is superfluous and could be insulting to your knowledge and I don't want to do that.

[bowlingbun]

Welcome to the forum.
This is no solution. Mum is going to NEED specialist care, residential 24/7 care, it's not fair on you, your kids, or your husband.
Can you give us some more information?
Does mum own or rent her home?
Have over £23,000 in savings?
Claimed Attendance Allowance?
Has the GP done an End of Life Plan?
Do you have Power of Attorney?

[stressed-out1223]

Hi,
Thanks for replies.

The major problem has been the information my mum has got from the oncologist. At no point has she told her how serious this is. Even it diagnosis this time she was told it was a stage 2 relapse- after I spoke with oncologist and she says they don’t change staging ( 6 years ago she was stage 2) but now definitely stage 4 which is fatal. At no point has anyone mentioned that there’s a big chance this will end her life. Due to this we haven’t had any discussions about end of life care, power of attorney or anything. She’s in complete denial which is so difficult to deal with. I’m a nurse so I know what the implications are of her disease and also her prognosis. I know hope is important and so I have tried to not take this away from her.

I feel like I have to fight all the time to get her what she needs. On the last month has two separate hospital admissions and without me asking questions about treatment etc she would still be in. She is in agony and finally feel like we may be getting some where in pain management now, but only because I have literally argued to get it for her. It’s awful!!

I live in a different area so have changed her to my gp here. They are excellent same day appointments, over the phone same day prescription etc so at least things should be a bit easier now from that point of view.

She had been living independently until approx 6 weeks ago. She went to sisters or mines after chemo for a few weeks, but went home as soon as she was better. It was only when the bone disease was discovered that things changed dramatically. Now she’s using zimmer/crutches/ wheelchair, unable to use stairs etc. She has had a treatment of radiotherapy to hopefully reduce some pain which seems to be significant ( oxycodone slow release and liquid; fentanyl tablets for movement; gabapentin and paracetamol) but I have had to fight to get this for her.

She doesn’t own her own home, it’s just rented. I have no idea about her savings but doubt she’s got more than £23000. I have no idea what benefits she gets- its never been any of my business.

We asked a while a go what makes her happy, she says being with her grandkids and that’s what we have achieved by her being here.

[bowlingbun]

As a nurse, you are in a better position than many people, at least you know what is involved with caring for someone really ill.

Somehow you need to deal with the finances issue.

If mum has under £23,000 then she will be entitled to care from Social Services, to give you a break, spend time with husband etc.but they will need to do a full financial assessment before providing the care.
I know mum only wants you all the time, but you need time away from mum.
First step is mum having a Needs Assessment from Social Services, and you, a Carers Assessment.

What is happening to mum's home?
If she is never going to be able to return there, then it needs to be emptied and returned to the landlord.
Maybe use this as an opportunity to bring all her financial paperwork together?
She should be receiving Attendance Allowance, if she isn't, you can become her DWP Appointee and deal with all her benefits on her behalf. I just asked mum "Do you want me to deal with DWP mum?" and she was keen to say Yes!

I know what I have written is very "matter of fact", that's because I've dealt with the last illnesses of all four parents and my brother, emptied three houses, and so much more. My husband died of a massive heart attack and I became very ill. Don't let this happen to you. It cannot always be about what mum wants, her needs have to be balanced with those of your husband and children.

[Breezey]

Hi,
Thanks for replies.

The major problem has been the information my mum has got from the oncologist. At no point has she told her how serious this is.

I feel like I have to fight all the time to get her what she needs. On the last month has two separate hospital admissions and without me asking questions about treatment etc she would still be in. She is in agony and finally feel like we may be getting some where in pain management now, but only because I have literally argued to get it for her. It’s awful!!

Now she’s using zimmer/crutches/ wheelchair, unable to use stairs etc. She has had a treatment of radiotherapy to hopefully reduce some pain which seems to be significant ( oxycodone slow release and liquid; fentanyl tablets for movement; gabapentin and paracetamol) but I have had to fight to get this for her.

She doesn’t own her own home, it’s just rented. I have no idea about her savings but doubt she’s got more than £23000. I have no idea what benefits she gets- its never been any of my business.

We asked a while a go what makes her happy, she says being with her grandkids and that’s what we have achieved by her being here.

It is awful to fight for things, it is unacceptable and takes time and energy away from essential tasks.

Welcome to our world, the unpaid barely/hardly supported/unsupported home carers when push comes to shove.

There are no nurses or care home privileges here, we are under the radar at the bottom of the ladder.
There are no doctors to consult ad hoc and upwardly escalate to, we may have long waits for a GP phone call of a few days or more if their triage deems so - we have to be crafty to get same day call sometimes.
We have to fight for everything and are told there's no money or a massive waiting list.
We do not have training - we have to find out/learn as we go and have the occasional district nurse berating us for things we didn't know about.
We have Occ Therapists lying down the phone to us for discharge and find on return home it's an unsafe discharge and there is no trust in the liars.

We slip through the net, we are unseen and unknown, we do not exist, we are untrained and unregulated.

This is our life - our 24/7 care giving with little to no respite for many - we don't work shifts and then go away and have our own personal lives, we don't get sick leave to be ill in bed, we don't have holidays, full social lives or days off or pension plans etc, we do all this 24/7 care on just over £67 per week for our constant care and hard work, nurses probably earn that in 2 or 3 hours, £67 isn't even a Saturday night out for many and maybe just pays for Friday night takeaway and bottle of wine or equivalent.
There's no sick leave secondments, we have to leave our jobs, holiday pay and pensions.
I hope you can return to work and keep your pension unbroken.

[Breezey]

Hi,
Thanks for replies.

we haven’t had any discussions about end of life care, power of attorney or anything. She’s in complete denial which is so difficult to deal with. I’m a nurse so I know what the implications are of her disease and also her prognosis. I know hope is important and so I have tried to not take this away from her.

That is so hard for you, the denial. When my dad was diagnosed with terminal cancer he wouldn't talk about it, he was being stoic, it was heartbreaking.

I hope your mum will find a time that she does want to talk about it and make plans and decisions, but in the meantime you just have to respect her denial, she has her own reasons.

Totally agree with Bowlingbun about offering to look after her affairs here and there, it's a good route to POA for finances.

I don't know if you have a local hospice or how in demand they are, but our local hospice does hospice at home care for qualifying patients (not sure if it is just end of life) they also do some respite, so look into it if you aren't aware of it, although if your mum is in denial she might not want to know.

Speak with the McMillan team at your hospital they will have a lot of tips and solutions etc.
If she has a normal bed ask for a hospital style one for her.

Focus on your mothers abilities and limitations, work with what is comfortable and achievable for her, my mother is elderly and very frail, some days a bed bath is the best that she has the strength for and she's grateful for it. A shower is hard work for her and she needs assisting for it, I'm guessing your mother will lose her strength and will be grateful for help with personal hygiene and not having to shower daily, but being a nurse you will know more.

[Ingrid Carers UK]

Hello Simone,

Firstly I wanted to welcome you to our forum, I can see from the thread many carers have already been in touch with advice and information. I'm sorry to hear about your mum, it's a really difficult situation for you, juggling work, care and family.

It might be helpful for you to come along to one of our online sessions, we've run them right throughout lockdown, meeting once a week usually on a Monday afternoon for about an hour or so. It's a chance for you to chat with others who are experiencing their own caring journey, who totally understand what you are dealing with. The meet up is a chance for you to talk to other carers, ask questions, get advice or simply just listen to you. There's no pressure to share anything your not comfortable with, but if you haven't been to one of our care for a cuppa sessions, I think you might find it useful and it's a chance to stop, have a cup of tea and meet other carers on line. I've attached the link for you Simone

https://www.carersuk.org/help-and-advic ... ne-meetups

We've had quite a few new carers join us at the meet up recently Simone, many have said how helpful they've found the session. Please have a look at the link above and join us if you would like to.

with kind regards
Ingrid