I am so glad I found this group.
My mum has terminal cancer. I live in the UK but I am originally from Greece, so… I left everything on hold back in the UK (including my PhD studies), to come care for her in Greece.
She is in pain all the time despite the many painkiller she is taking. I am doing my best, trying to give her massages and do all the things she asks for while also I am trying to work from home.
She has no quality of life and at least once a day she is wondering why she isn’t dead yet and she really wishes to die.
I am really tired, with broken sleep overnight, sometimes I get agitated with her and though I am trying to hide it, I think she may pick it up occasionally. Then I feel terribly guilty. I feel so helpless and useless. There’s nothing to offer her to make her feel even marginally better.
I look at her, and I feel this is a different person than the mum I once knew. She is so thin and so weak and I feel so sad seeing her like that.
I have no idea how I keep moving on to the next day but I do. Is it lack of carer training that makes me feel all these horrible, conflicting emotions? Or am I a bad person? How do I do this the right way? Thanks in advance.
Hi @Eleni_Tsiakaliari Welcome to the forum.
First of all, I’m so sorry your Mum is so ill: no matter how we think we should cope with all that you’re dealing with, the truth is we’re not prepared for the physical exhaustion and the emotional stress of caring for a loved one who is dying. So we feel guilty because we don’t meet an impossible standard.
This is your mum. She means so much to you, and you feel guilty because she’s suffering so, and because you feel that you’re failing her. Yet you’ve given up so much just to be with her and to care for her.
Being human, you’ll lose your temper occasionally. That’s the exhaustion and the guilt coming out to harrass you. I’m sure your Mum feels guilty for putting you through all this - even though it’s not her fault.
You’ve both been dealt an impossible hand. I don’t know what the care support is like in Greece, but it may be worth contacting your local authorities to see if they can offer any help: it’s likely to become more difficult for a while, and you may well need some help.
No not a bad person, but out of your depth. I don’t know how things work in Greece I’m afraid as far as social care is concerned. My next suggestion is going to sound horrible, I did it with tears rolling down my face. You need to Google “Signs of Dying”. You will find some really helpful articles about why people don’t want much, if anything to eat and drink. How the body slowly shuts down over a very long period. I just wish someone had suggested this to me when the first of our parents was dying.
That was really nice to read! Thank you!
Truth is she is constantly telling me how sorry she is for putting me through all this. I am trying hard to tell her all the time that she is the one suffering and shouldn’t worry about how I or anyone else feels, physical exhaustion will eventually pass. However I don’t seem to convince her.
Our local GP has been very helpful but we were very unlucky with her oncologist and hospital care. I often wish she lived in the UK with me, at least then we could have some very decent palliative care.
I am very relieved to find I am not alone in my thoughts and feelings.
She is most definitely dying… Blood tests showed that her liver is failing and the GP said we have at most 20 days. I just find it so hard to believe it, she talks fine, she is sane, she looks so normal when she sleeps. And…we had many different time frames thrown at us in the last month or so, it’s hard to take it completely seriously. I am so sorry you have lost your parents too. 
I am glad I have my sister and we take it in turns for a few weeks at a time, I hope you had and continue to have support around you!
@Eleni_Tsiakaliari BIG BIG hugs
Everything you’re feeling as @Charlesh47 said is so VERY human and filled with love…it’s also filled with agitation, rage, anger and more love these are not bad feelings ALL these feelings are signs of your early grief and raging at the injustice of your mother’s suffering AND to be honest YOUR suffering too, as well as your sister and all your family.
I too care of Dad with my Mum through the hellish time for a few years holding him in his last gasp literally, and I loved him deeply but still was angry at and with him…I know that sounds terrible but we had 6-8months of middle of the night cardiac issues, and arguments about calling paramedics etc etc
BUT it was all because it was an impossible horrible situation and we were struggling - which I think mirrors what you’re feeling too Eleni
You’re frustration and agitation at it all can probably use some big pillows to punch hard…pummel and murder those pillows because it helps evacuate the tension…I’m not sure if you can get out for some fresh air and a walk but the movement does wonders for your brain-in-grief
You are already doing things the RIGHT way as you call it…there is NO ONE that can do this perfectly, and TBH there is no such thing as perfect because we’re perfectly IMPERFECT humans!!
I can tell you what I did a few times with Dad AND Mum to reassure them…I explained why I WANTED to be here with them, that I loved them and it was MY choice. I was not being guilted, coerced and manipulated but consciously wanted to be here to support them because I didn’t feel right working in another country whilst they were struggling…I’m not saying everyone has to do this, I’m saying this is the decision I made FOR ME…
And…I would be fine, I’d look after Mum and she’d be fine and 'if you’re tired and don’t want to continue, Dad rest well knowing we’ll be fine…you can go and haunt your friends on the golf course or go to your childhood holiday place…
I found talking about childhood holidays, favourite times and peaceful places helped dad ease into sleep. Music helped too.
I hope this gives you some strength and empathy, Eleni…the grief of it all is painful and messy and there is no (stupid) 5 stages …just a lot of emotions…
Be kind to yourself, give yourself hugs. Sending strength and hugs
Mum died almost 10 years ago now, the last of our four parents. My husband died 18 years ago, and I’ve lost my brother and lovely sister in law. My son has learning difficulties, so I’m still a carer. I hope that by being open and honest about my own experiences, I can help others. Doctors can only make a guesstimate about how much time is left. You and your sister need to agree as soon as possible which funeral director you are going to use, so you need to know how much you can afford. That means knowing as much as possible about mum’s financial situation, bringing together all the relevant paperwork. Then talk to the funeral director about the situation, so that when needed you don’t have to explain through your tears. Have a little notebook for names, addresses and phone numbers, prices agreed etc. When dad was dying in the hospice, mum and I talked about happy things in days gone by. He was definitely listening but speaking was hard due to the medication. When this is all over and you no longer have to put a brave face on, and the formalities are over, you are going to fall over the Cliff of Tiredness. Be sure to allow for this.
I’m so sorry you are going through this. It’s awful and it will go on for what seems like forever.
We had the same with Mum’s husband (he is my Dad I guess but I refuse to call him that). His cancer went on for 3 years and those 3 years were the hardest years of my life (and Mum’s and one sibling).
He ran us ragged. He was always a diva but he went into super diva mode and the things that came out of his mouth were horrible. We would dread each time he was hospitalised because he would make diva like demands and we were rushing to and from hospital. He was always a bully and there was lots of domestic abuse over the years but we felt we had to do what he was saying.
The only thing you can do is be there for her, keep her fed and watered and just listen to her. Your Mum sounds like a gem compared to my Mum’s husband. Towards the end, he used to shout at us and wave his walking stick and often said we were all useless and we had never done anything for him. Once he said “just throw me in the garden and leave me to die” and Mum got so annoyed, she said “let’s do it”. Hahaha.
Make some time for yourself. Sit in the garden. Go for walk. Buy a teddy bear and confide in it.
Wishing you all the best,
Loosing your composure is a thing few of us can not help doing. When it happens in my caring roll. I take myself off to the garden for a chill out. My mum can be hard to do things for. As with her altzheimers and dementia I can say something and she gets angry, can throw things and wave arms about , it’s like being in a boxing ring sometimes. Find a chill out place. And just sit there doing nothing. It does help. Sorry for your mums prognosis. But I know how hard it can be as well as the sacrifices you’ve made. I had to give up work, and all my savings now near gone with poultry government benefits threshold