End of life care for mum

Don’t know where to start… any waking minute is brain scrambling and sleep deprived. Hovering over mum like a newborn baby. Bottling up feelings staying strong for everyone else.

Hi. kels5blue. Welcome. With so little information it’s difficult to advise you even if I could. It sounds as if you are your mum’s carer. Carers suffer, and toward the end it’s even more painful. You say you are ‘bottling up feelings’. Now I know how difficult it is to put on brave face for your mum, but I suggest when on your own if you feel emotions, and you will, let them go. Bottling up is not good for mental or physical health.
You have come to the right place. So many here have been in your position. Watching someone you love in pain is almost unbearable. All you can do is be as caring and loving as you can. You will have no regrets if you do. It can be so trying, but one has to look to one’s own health and well being as best we can
Blesings, and our prayers are with you.

Hello, you sound at your wits ends and you just want to sleep and can’t. If things are that bad for you and there doesn’t appear a way out for you , may I suggest you call your GP and see what help they can offer. The state you sound to be in because of what as gone on over the past will not go away without some kind of intervention whether that’s medical or counselling or both, you poor little love and to be honest someone you can talk to and get hugs from would help as well. Please don’t try to deal with the state you are in on your own. This site is always here for you and many have and are going through terrible times, grief holds nothing back, it try’s to crush some of us and you will find that other people are fighting it. Be kind to yourself but please think what’s the best way forward for you. Blessings S

Thank you for your replies. I have been my mums carer for 16 years and have now come to end of life care. Finding it extremely difficult leaving the room where she is in my house and have been sleeping next to her for over a week now. She has been up and down and finding it very confusing from one day to the next. I know this is normal and natural feelings but it’s hard feeling one thing and showing something else in the outside as I have an 8 year old daughter in the house too and trying to put on my plastic smile every time she is around. She thinks mum is going to be better soon and I don’t want her to see my feelings.
Don’t know where to start… any waking minute is brain scrambling and sleep deprived. Hovering over mum like a newborn baby. Bottling up feelings staying strong for everyone else.
Don’t know where to start… any waking minute is brain scrambling and sleep deprived. Hovering over mum like a newborn baby. Bottling up feelings staying strong for everyone else.

It’s no wonder you feel like you do, telling me that you are your mums full time care is the full story and having an 8 year little girl, you have your hands full. Is it possible to get little bit of help so you can sleep, do you have a district nurse calling or a community nurse, these are the people who should say they can find some help for you. I feel you won’t want your mum to go into hospice for her final weeks but that’s an other idea. Anything just to give you a little rest and time with your daughter. We are always here for you, so never feel alone now or later, we are here to help. Please think about your own well being. S

Thank you Suzie. I am her sole carer but we do have district nurses every day changing her syringe driver And top up medication. My husband is off of work due to covid-19 So he has been taking care of my daughter in the house while I’m in my mums bedroom with her. Mum never wanted anyone else around so not been able to get any Carers in. To be honest I wouldn’t want anyone else taking care of her. She is now at the end and I would hate it if something should happen and I’m not there. Just so tiring and heartbreaking

That’s just what I expected you to say about your position on other people helping. I do hope the district team are good, most are and will help if you need it. It’s nice to know that due to the virus your husband is there to help but please take care of yourself. I know exactly how you because I have been there, it is few years ago now but that feeling of it driving you crazy and not being able to understand why, when you know exactly what you are doing and how to do it, is horrible. Can I just add that later it will hit you even more than now, so be very careful. You are in my thoughts and my prayers.

The have also been experiencing feelings of guilt. She is on injectables through syringe driver and slowly it’s being raised. She had a good day recently and I asked them to hold off topping up and I had conversation with mum about it and she asked to hold off too as she was feeling fine. Then the very next day she was unresponsive again so due to raise meds tomoro. Feeling like I’m failing her And in case they have got it wrong and she could come out of this But I’m allowing them to practically sedate her. Head going round in circles!!

These feelings of guilt and not knowing what is best are all normal and if she was in an hospice then the doctors and nursing team have these discussions and even then they are just guessing that they have got it right. We don’t know what or when things will end or continue with life no matter what the state of the human body is in, we don’t have all the answers. Sorry. Talk to the nursing team and just pray for that inner strength that I know you have. It’s much better if your mum doesn’t have any pain, that’s the biggest thing when push comes to shove. Hope you have managed to get some sleep and have time to eat properly, you do need to take care of yourself, I know how difficult it can be. We are always here for you and I am thinking of you and your family. xxx

Thanks again Suzie. Mums not in a hospice. She’s living with me in my home. She has been for over a year now. The hospice are involved and Marie Curie nurses for medications through the night and district nurses once a day for syringe driver. I seem to have been weighing up pros and cons for decisions over the past week and today I’m clearer knowing it’s the right choice to up meds for deeper sedation as any breakthroughs were not of any quality for her at all. You have some very kind words and I very much appreciate your support. I have not been able to talk to anyone else in fear of breaking down and not getting back up x