Hi everyone.
It's almost hard to believe that I am even typing this, but here I am. My Mum is now in a nursing home. She went in on Friday after it got too difficult to cope at home. Sunday she was not well at all and in pain, Monday she was a little better and today she was in pain again. It is so difficult to witness; I feel so helpless. We have asked for the medication to be reviewed as she says that the pain is unbearable. I hear the noises she makes and it is horrific. She's bed bound, has a fistula causing major bladder and bowel problems, difficult for her to move at all below the waist.
I feel like I don't know what I should be doing. I feel guilt for even trying to do anything nice for myself (myself and my partner have planned two nights away, an hour from the care home, later in the week). I know there are probably questions I should be asking; I am so fearful that I will forget something. I feel guilt that I find it difficult to be around her sometimes as I cannot bear to see the pain she is in, then I wish I was stronger.
Also I don't know if I should be there at the moment of her passing. A part of me feels yes, of course, but the other part thinks will that just be too traumatic to cope with.
I feel like my life is falling apart. I'm exhausted. I don't know what I want anyone to say but if anyone does have any words of comfort, I could use them.
Thanks everyone
Hi Helen_M
oh I just want to give you a hug after reading that. Life is way too cruel.
I've been supporting my husband through his stage 4 brin tumour journey since his diagnosis in Sept 2020 and last week the dr sat my kids and I down to explain that he had days, perhaps a few weeks.
In reality there are no words for this. G is still at home. He's since developed a DVT so that too could bring this to a sudden end. I am terrified of waking up in the night or in the morning to find that he has slipped away in the bed beside me. That's been one of my biggest fears right from the start.
At the end of the day all any of us can do is our best and follow our hearts. We can't be watching over them 24/7 no matter how hard we try. Take time for yourself. Go away as planned as you need to recharge your own wee batteries to put you in the best position to cope here. It's not selfish to take time for yourself.
The dr advised us to have the conversations that we wanted to have sooner rather than later. That tore me to shreds for a couple of days until I recognised that the version of my husband that I have now is too broken to have those conversations with. My daughter is struggling to be around her dad as she can't bear to see him like this. She's only 23- too young to have been exposed to this. Neither my son nor my daughter have any experience of losing someone so I know this is going to hit them hard. All I can tell them is that we need to help each other and we'll get through it but that each of us will take a different route through it. There's no right, there's no wrong.
I can relate to the exhaustion as well. The nurse said to me last week "You're just done, aren't you?" She was right.
This is a safe and supportive space so please reach out here anytime, You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
For now I'm sending you a huge virtual hug and lots of love and light. Stay strong.
Love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
