I can't cope with the rollercoaster

[Lesteresa]

My Mun is 95 and in palliative care. She has been in bed for the past 8 weeks and needs 24 hour care. She is at home and I have moved in for the last 8 weeks. I have carers 3 times a day. I can't cope with the rollercoaster of not knowing what each day will bring. She will have days and nights where she just sleeps very heavily and looks so very ill. This was Monday and Tuesday of this week . On Tuesday afternoon my sister visited and we truly thought she didn't have much longer. Then suddenly on the next day she is quite bright and responsive and talkative. I'm trying not to let it get me down but I am struggling. I take each day as it comes and try to spend as much time as I can with her.

The other problem I have is with her calling me all the time when she is having a better day.

I understand that it is awful being on your own in bed day in and day out but I struggle to with the calling. It gets into my head and I can't bear it at times. It is always me that she is calling for - occasionally she calls so my husband if he is there. I can't switch off the sound of her calling. She is lonely and hates being on her own.

Does anyone else have the same problems and any advice would be so useful please?

[FredaE]

have you been in contact with your local Hospice?? They help family as well as patients and are very good at teaching them what to expect and helping them to cope. You are needing help in an unfamiliar situation. Life does not always end by a slow steady slide downhill but is more like a guttering candle.You are right to spend as much time with her as you can but can you move your day time base into her room so that you can be there with her as you go about your life . by just being in the room you may stop her feeling so lonely as she sits on the edge of eternity. You can keep silent or talk or hold hands or smile as you both wish. Reading or knitting or using your computer or whatever you do will fit in with what is needed and be less stressful than the roller coaster of interrupted activities

[Lesteresa in reply to FredaE]

Thank you - yes I am awaiting a call from the Hospice tomorrow. I do hope that they can help. I just need someone to talk to and my Mum too needs someone. She is still fighting - not understanding why she can't sit up, walk and do all the things she used to do. It is so sad. I don't want to see her like this but her choice is not to go into hospital. She wants to be at home - and yet a lot of the time she does not recognise where she is. I hope I can be there for her as much as I possibly can but there are times when I just want to run away and escape from this situation. It is hard watching your Mum fade away.....

[FredaE in reply to Lesteresa]

yes its tough - probably the toughest thing you will everhave to do

My late husband desperately wanted to come home and was very happy to do so..after being home for a few days he confided to a friend that although it LOOKED like home with the same carpet and exactly the same view from the window he KNEW it wasn't really but as I was there and wrongly thought it was home he was quite happy to accept it until i came to my sensesand was prepared to move us to our real home. it seemed not to worry him so i did not worry about it either,just warned the carers

[Lesteresa in reply to FredaE]

Thank you for your support. Much at xx

[klr31]

It is so hard and such a roller coaster. Be kind to yourself as much as you can be at this difficult time. 🌹

[Lesteresa in reply to klr31]

Thank you. I will try to have breaks too. Xxx

[JohnNicola]

Welcome to the role of caregiver! That's the way it is but I am happy to see that you are looking at hospice care for Mum. That is probably the best place for her to get the care she needs as well as the patient caregiving that is very stressful on family members because you always feel that you should be doing more. My experience is that no one understands what you have to deal with moment by moment, day in and day out. You may want to consider some of the help that can be provided for you by your local hospice support group - they have volunteers trained to sit with you, listen, and other support functions.

[Lesteresa in reply to JohnNicola]

She will not go into a hospice but rather - I hope - they will provide care at home. They have offered counselling to me. Every day there is something else that I have to deal with to make my Mum more comfortable. It's hard. Thank you for all your kind comments xx