Just overwhelmed and scared

Hi Kat55

You are right, it IS a lonely place being a carer and very very exhausting both physically and mentally.  

I was exactly the same as you, I thought I was being strong but being strong for two isnt easy as every waking minute is draining and you just want it all to end.  Be kind to yourself and try to take time away if you can even for just an hour or so.  I sincerely hope there is light at the end of the tunnel for you both.

HI Kat55. Oh I just want to give you a huge hug and sit you down with a coffee/tea/wine and let you chill out. I hear you. It's an unrelenting job caring for our husbands/partners. It takes stamina and resilience but trust me you are doing so much better than you give yourself credit for. 

My husband received a terminal diagnosis out of the blue 17months ago. He was given 12-15 months which was horrendous to try to get  our heads round as a family. He's still doing great though - physically anyway. Mentally he's a bit like a dementia patient. This limbo existence is horrendous. It was hard enough to deal with it when we had an expectation but this "no knowing when" phase is 1000 times worse. It's draining.

This is going to sound callous and I don't mean it the  way it'll come across. His friends took him away for the weekend (5 middle aged men in a lodge for the weekend with beers and a hot tub- I really don't want to ask!) but for those 3 days it was bliss! The kids and I felt knackered but the pressure was off. We could relax and recharge. The world felt lighter for those few days. Is there maybe friends or family who could give you a break- even for a few hours? I really feel the benefit of those few days "off duty".

It’s always good to talk so please remember that you can also call  Macmillan Support Services on 0808 808 00 00 anytime especially on the rougher days - 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.

Not sure if any of this rambling has been any use to you. Please know that you're not alone though. As wives and carers we also need to take care of our wee selves too. It's not selfish taking a bit of "me time". Even just a few minutes can help.

Sending you a huge virtual hug. Stay strong. 

love n hugs

Wee Me xx

I feel like I could have written this lovely ,I'm exhausted , even my tired is tired lol x And i'm not the one with the big C so how can I be so selfish ? Every time I sit down I fall asleep ,I come home from work ,I sleep ,I have a day off ,I want to sleep , it's unreal . I don't want to have to think about it but it's there looming over us 24/7 I feel your pain x 

Oh Kat55 - It's my Mum and I know how you are feeling, It's all we talk about now, no other conversations - she has SCLC and I know it aggressive and she only has a short time but sometimes I just want her back, to laugh at the normal silly things. At the moment she is having her kitchen revamped but it's me who is doing all the work, - Honestly who cares about a new kitchen, I understand why!!!

I also work full time.  I have not spent any time with my Husband in 8 months and he is my best friend, we are two ships passing in the night and he thinks my Mum puts to much on to me. I have two sisters and they pitch in when they can but I can't talk to them about this as I should just suck it up!!

Today I read that some-one on this site's Dad passed away and we both joined here roughly at the same time and both Parents have the same cancer.  I now just feel so overwhelmed for feeling tired, so tired and complaining. I mean who am I to complain xx

Hugs to you and the kids.

Your definitely not alone xx

I am suffering with the mental exhaustion more than the physical. The reminders all around you of the condition, the intrusive thoughts in your head, the questions from other people and the relentless unknowns, appointments etc. It's too much and it isn't even me who has it. But a little voice inside my head is saying what about me. I want to talk to my husband but I don't feel I have any right to burden him with my thoughts and feelings. I sort of share with friends but unless they have been through it they dont really realise how difficult and straining it can be. I feel like a rocket ready to explode at times. Thank you for replying x 

Thank you for your reply, I am truly appreciative of anyone that takes time to reply and resources available. To know your not alone with your feelings, and to share in an environment where there is no judgment or guilt for how we truly feel which include uncomfortable thoughts or feelings which we can't ways express to the outside world or partners despite loving them dearly. x 

It's amazing what humans can endure. I don't think its selfish to feel tired or crappy but it is difficult to justify to yourself when someone you love is suffering. That's the thing with it all, it feels like it takes away some of your rights to express anything or self compassion because you don't have it but we do suffer too x 

I feel exactly that way. We're now nearly 1 year since my husband's diagnosis, when typical survival of 12-14 months was being discussed, but with all the treatment he's had, and is still getting he's still 'sort of' OK. He can work some days, but I carry all the emotional and mental load for keeping the household running, just like he was another child in my newly one-parent family.

For the first few months I was like a rabbit caught in the headlights unable to stop thinking about it, but unable to talk to anyone about it.

There have been some good days/weeks, when he has felt good and we've sized the opportunity for a couple of days away, without medical appointments. And there have been some bad - when he's had scary medication/treatment side-effects.

I have tried to adjust to the unpredictability, but it is way outside my comfort zone to live like this, even without the nagging thought that my husband could suddenly die. And it's sooo hard to explain to others all the time why you don't want to commit to doing something next week.

The pressure everyday is intense. I am constantly wondering, have I crossed the line to needing medical help with this for myself, or do I just accept that my capacity to 'do stuff' is going to be tiny, for the next few days/months/years and soldier on. I keep choosing the latter, then wondering 'how long'?

Not sure this offers much to you, except to know there are lots of people around you feeling the same - just none of us is saying it!

Hi motherofboys

oh how your post resonated with me! 

My husband was given a terminal diagnosis ( brain tumour) in early Sept 2020 with a prognosis of 12-15 months. He passed his "best before" date at the of of November and we're now in No Man's Land. 

Physically he's still in good shape. He's a marathon runner and is still able to run- thank God. Its the only bit of his "old life" that he has. Mentally he's slipping so its like having an unruly over tired toddler on my hands at times!

I'm still working full time and trying to juggle that plus keeping an eye on him and keeping the kids on an even keel and trying to keep myself up straight too. It's unrelenting! Like you I wonder on occasion if I've crossed that line but I keep thinking " let's get through today and we'll see how the world looks tomorrow."  So far so good. 

There are so many unknowns here. I have no idea how long my husband has left. We've not been given any clear expectations by his medical team despite asking repeatedly. I've lost all faith in them due to the inconsistencies and contradictions over the past 17 months. He could have a seizure/stroke and be gone in minutes or he could have months and months left. it makes trying to live your life nigh on impossible. I guess I reached a point where I decided to be "selfish" and have made plans, booked concert tickets etc and  generally try to work on the assumption that if I'm meant to go then I'll go. 

You're right too that not many of us actually open up and say how we feel. I guess its a fear of being judged perhaps. Unless someone has lived through it though who are they to judge?

Stay strong. Keep going. As a close friend of mine repeatedly tells me on the rough days "Chin up. It'll pass" We will all get through this journey one way or another. we've not been given any other choice really, have we.

Sending you a huge virtual hug

love n hugs

Wee me xx

Hi Kat55

Your post really reflects how I'm feeling. We received the terrible news ladt week my husband's chemo is no longer working and his cancer continues to spread even further. Since then I've been overwhelmed with sadness and fear.

I'm not working at the moment as he needs me around to help. We are now just trying to enjoy 1 day at a time. He still works when he can as he enjoys it and we are trying not to ruin 1 minute of the present. This is hard as I have shed so many tears recently but know I will regret not trying to enjoy the time we have.

Sending you a hug and know you are not alone x