Newbie. Caring for Mum on my own at home.

FormerMember over 4 years ago

5 replies
23 subscribers
372 views

Hello I hate to admit it but I'm in a state of shock. Two weeks ago my 88 year old very independent Mum was rushed to hospital with jaundice, pain and nausea and after 5 days and a biliary stent procedure was then discharged into my sole care with terminal pancreatic cancer and liver damage. No further treatment just palliative care. I was given one hours notice. I live 50 miles away. No other family members will help. The hospital asked me three questions...do you have any dependents, do you work from home, can you pick her up and stay with her?
I've moved in to her house. Took emergency leave and am now providing 24/7 care. She is incontinent and can barely walk a few steps. Her legs have gone from under her twice while I was supporting her. She is very anxious.
I've moved a single bed downstairs and I'm doing the best I can keeping on top of her meds. She's on 27 tablets a day. We never received a discharge discussion with the team so I have no idea about diet, pain management ( just using OTC paracetamol at the moment) or the length of time she has left.
I was told she had opted to die at home and that there would be a team put in place to support us. I am now completely on my own and can't leave the house.
I've spoken to the GP who had not received a discharge note so I sent a copy round. We did not have all the drugs on the list in the bag the hospital gave me and in particular no Zopiclone so she didn't sleep for 5 nights.
A Macmillan nurse visited yesterday and has started to coordinate things.
District Nurse is coming on Tuesday. 2 weeks after the discharge from hospital.
I am dreading the long bank holiday weekend. I know I can phone out of hours numbers but I have no idea what would constitute an emergency and what we just deal with ourselves.
I have been doing this for just 6 nights now and already I'm exhausted, bruised from all the lifting and terrified I'm getting it all wrong. I have barely slept and spend every waking hour helping mum and searching the internet for knowledge, what to expect next etc etc.
I've just read all of this back and it sounds like a massive list of complaints. But I just can't believe that what's happening is right. There have been no checks on my ability to do this or that the house is safe, the bed is correct etc etc. One minute she had a team of healthcare professionals around her checking blood pressure, other vitals, giving her meds etc and now we have just been left to get on with it.

I'm fully willing to look after my lovely mum and make her last days, weeks or months (we have no idea how long) but I feel completely isolated and ill-prepared.

Is this normal?

Thehighlander over 4 years ago

Hi and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your mum’s diagnosis and the challenges you are facing

A cancer diagnosis like this can be hard for those doing the caring but talking with others who are walking the same type of cancer journey will help you navigate this challenging time.

The Community is organised into support groups so can I recommend you join our supportive Carers only and supporting someone with incurable cancer group groups as you will connect with others walking the same journey supporting family and friends through their cancer journey.

To join a group just click on the link above then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens.

You can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.

Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

((hugs))

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

FormerMember over 4 years ago

Thank you. So helpful and kind.

winkers60 over 4 years ago in reply to FormerMember

Hi,I don’t know anything about palliative care but you shouldn’t have to struggle on your own.I cared for my mother until recently but as I had cancer it was very hard.I got help via social services who arranged for 2 carers to come in and give some extra support.It is so tough being sole carer,not being able to leave the house,no sleep etc.I know what that is like.You could try social services and your mum’s gp and see what help they can suggest.I hope you get some help soon.love and best wishes.Jane xxx

FormerMember over 4 years ago in reply to winkers60

Hi Jane thanks for this. Really reassuring. Good to know help will be on its way once the wheels start turning. Spoke to Mum's GP and we will be on the radar for support soon. Just can't believe how family and especially my Sister are unwilling to help. My friends have been great and have run a few errands and provided moral support. Take care of yourself. Xxx

winkers60 over 4 years ago in reply to FormerMember

I’ve been in the same situation though mum didn’t have cancer.The system is so complicated,all these separate teams doing things and practically no communication between them.Our health centre is awful.I hope your mum’s gp is helpful.My sister has been a good support since I’ve been ill but she hardly ever helped with mum.When mum was first ill my sister moved to Canada ! Fingers crossed you get some support soon,it will help.Love Jane xx