Advice for Mum at end of life

Hi JaneD welcome to the forum your post doesnt sound cold at all but it does sound like you are very stressed and looking for some answers. You also sound as if there are lots of different parts for you to juggle to make sure life goes on as normally as it can for people.

My question to you is reframed somewhat and hopefully by doing that and whatever your answer is will help to alleviate some of the stress you are feeling.

How will you feel if you leave and something happens to your Mum? Will you feel cheated or feel that she has been in the right place to the support that she needs to have as good an end to life as she can have?.

I hope that you do not think that my response is flippant in anyway I was at a support group meeting today and they were talking about reframing our thoughts to minimise stress, hence why I ask the questions I do. Hope that makes sense.

Sending my very best wishes your way meantime. xx 

Thank you, Granny59. That does help me to try to re-focus what I’m actually worrying about. It doesn’t answer the question I asked but perhaps the question I wasn’t asking so thank you x

Hi JaneD,

Your mum and my mum sound similar and I keep asking how we will know when  / how long and I keep being told that no one knows.

Mum was also given weeks in July but is still able to eat a bit of toast each morning.

She is now confused when awake and it feels close. I absolutely feel your pain. You are doing all you can, I wish I could help.

X

Replying to this message as it’s the most recent one in the chat. Sorry to hear what your loved ones are going through, for me it’s my dad and after 2 and a half years with terminal liver cancer he’s deteriorated badly over the past week and I know where JaneD is with the knowing how long it’s going to be and trying to let work know what’s going on. Tough one and exactly where I am just now.

My frustrations just now are around knowing who should be looking after my dad’s care to get the help we need. Had district nurses in, referral to social work and Macmillan nurses and everyone is very good at talking and attempting to get the right person to come see us to get some practical help but it’s just talk at the moment and no actual help. How have you got on getting the right people to get the right decision made and the right care? Should it be this frustrating?

F

Hi F,

Thought I would reply to your post as going through similar.  Know how you are feeling, trying to get the services to all link up can be so frustrating.  My dad has small cell lung cancer, with brain mets, has done amazing and still here after three years and lots of treatment. Recently had a fall and had a week in hospital.  He’s now home, on leaving hospital we were promised so much care.  I’ve found don’t sit and wait for it to come to you, make phone calls, your local hospice, hopefully will have a hospice at home team, community nurses, your go, carers groups and Macmillan help line will support you and advise you to keep going and where to get help if you  are feeling a bit overwhelmed.  
Sending hugs to you and your loved ones. 
There is support on here, which is a great help. 
You got this 

L 

Thank you L, definitely feeling overwhelmed last night and feeling a bit better this morning after a better sleep than the past 2 nights. Dad is still sleeping this morning after being up and dressed and putting heating on Tuesday into Wednesday at 130am and at 5am on Wednesday into Thursday. So glad he’s stayed in bed last night and allowed us to get a sleep too. Macmillan nurse coming today at 10am so we’ll try to get things moved forward in that meeting. Thank you so much for your words and hope you and your loved ones are getting the support you need with your dad. F