Carers only

Looking after a loved one with cancer? This is a safe and supportive place to share your worries and emotions. Please remember when posting that this group is for Carers only.

Its all getting on top of me

Leer1975
Posted by

Hi, just wanted to vent, don't really have anyone who understands that's outside of this nightmare. I'm caring for my Dad who has stage 4 brain cancer (GBM), he's at my house since last week, bed bound and deteriorating. Im on leave from work which I'm thankful for but I'm trying to run a house with children and getting distant from my hubby. Dad needs me 24 hours, besides carers 4 times a day it's full on for me. My mum is sleeping on the settee with me next to Dad, he has bad nights all the time, he's confused, struggles to breath. We have had DNs out most nights to sort leaking catheters, inject him with pain relief etc. I think his time to leave is close because he's calling out for his mother and father and points at things not there. He's still eating and drinking though and sometimes can have a chat.

Could get a night sitter but he would freak out, he's such hard work, like a form of dementia, he's poo obsessed and shouts he needs to go all the time. I struggle to put the bedpan under then he doesn't go. I'm exhausted. I miss mu hubby although hes in the same house, he's so busy sorting the kids and working too. 

Sorry for the vent, just needed to get it off my chest. None of this is Dad's fault and I want to take care of him, but it's just so incredibly hard. x

Madesp
Posted by

Hi 

Just want to let you know that you are brave and strong by trying to juggle everything. Be kind to yourself and let the carera do as much as possible. Reassure your dad that he is loved and your mum will be looked after if anything happens to him.

I feel for you as we too are on the same journey. ...my daughter in law is full time carer for my 35 yr old son with Gbm that has now metastasised to the spine rendering him paralysed from waist down. It's so hard for her especially as sometimes he'll ask to get up from bed at 4am if he's not able to sleep and because of latest set of seizures he is not allowed sleeping tablets. 

She is also a mum to 2 lively children under 8.

I try to help as much as I can but the weight is mostly on her shoulders. 

So please go easy and take care of yourself x

Mad 
Leer1975
Posted by

Thank you. I feel like such a crap carer, my mother is just as much of a handful and is a really difficult person so that's added to the mix. I was abrupt with my Dad last night because he insists he needs a poo and when he's on the pedpan keeps saying he can't and won't go. I put him on 6 times yesterday, twice through the night, it's a mammoth task as he's heavy and with his tumour causing confusion and he grips on the bed sides and won't let go. I've not slept properly for 10 weeks or so now.

My mother told me I can't cope in an arsy tone and she's moving him over her house. He's over mine because she would never be able to do it. I feel totally disrespected by her comments, No one else in my family has stepped up at all and I've turned my life upside down and my kids lives to look after him and my mother disrespects me. My brother does nothing but because he has mental health issues my mother says that's OK and rolls the red carpet out when he comes ones a week for an hour if we are lucky, yet I'm here 24-7 and she does not appreciate me at all.

I'm sorry for your sons situation, so young and with small children I know its so very very hard for you all. All we can do is our best whatever that may be. 

Take care x

Madesp
Posted by

Dear leer1975 

In the situation given the circumstances sounds like everybody is edgy and snappy. ..this is NORMAL. You are not a crap carer . You are doing your best and deep down it is appreciated. You are so tired and  deprived of sleep and bringing in carers for night time may be the next option. You sound utterly exhausted.  Please call the  palliative care hub for help now. They are there  to help not only your dad who is the patient but you as well. You must be fair on yourself as you have a family who need you too. X

Mad 
catcrazy4
Posted by

Oh my dear Leer1975,

You are so NOT a crap carer, its the situation you find yourself in that's crap! You unfortunately will find that because you're not crap and can juggle untold number of tasks and the emotional roller coaster that is being a carer, folk around you will take that for granted - that's where the disrespect comes from. Also they may feel inadequate themselves.

I learnt not to judge people too harshly as not all folk within the situation know what to do or cope as well.

You're doing a fantastic job and so is your hubby. Find some time for each other even if its taking the kids out for a walk or to the park for an hour, you're each others best support.

Find whatever you can to keep going including asking for help from health professionals/support services. I do understand not having overnight care, that was offered to me when my mum deteriorated and like you said I knew mum would hate it. To be fair I didn't want it for her either, not sure it would have stopped me getting up during the night to tend to her. Do what YOU feel is right for you and for your dad.

I really hope that you find your way through this but do search for support however small that maybe xx

I dance like no ones watching, yep I'm the crazy lady in the middle of the dancefloor!

Leer1975
Posted by

Hi, thanks for your reply. Sadly my lovely Dad passed away on Tuesday night, such a quick decline. Its been a tough 3.5 months and he passed at my home where he wished to be. I'm now reeling in the loss and spending the time with my kids and hubby that I wasn't able to do before which is lovely, but I still wish my Dad was here. 

Thanks for your kind words, I didn't get night carers after as he needed me and my mother so we slept on the settees right next to him. I think if it had been a longer illness then maybe I would have looked for some help if he wasn't aware during the night that we weren't there. 

Thanks again xx

Granny Sue
Posted by

Sorry for your loss take care of yourself x

Granny Sue

Akela2516
Posted by

So sorry to hear about your lioss. I hope you get some support for yourself now xxx