It's too tough

Oh Khandikane, I feel your pain!! I am so sorry this is so tough on you. Let me reassure you, what you are feeling is 100 % NORMAL, not only that, its 100% UNDERSTANDABLE and , actually, justified. And it no way means we dont love our husbands. But it's so flippin hard being carers, watching them go through all of this, it takes its toll on us, we see them changing and the man we married gradually disappears....

All I can say is, try not to feel guilty about your feelings. It is the hardest thing we have had to do, not just the caring but the adjusting to whatever the future might bring. In my case my husbands cancer is terminal.

If you are able to, go out for the day with mates, or have an evening out, maybe once or twice a week, get away from it, it sucks the life, energy and positivity out of us. It is exhausting and stultifying. BUT, this is still YOUR life, aside from all this. Try to live it if you can. For you.

Xx

Hello Khandikane, I've only just joined the forum and this is my second post, I couldn't walk past yours without replying.  I care for my 88 year old mum and I have felt every single one of your feelings (and a few more!) every day since I started caring for mum a few months ago.  Not having time or opportunity to think my own thoughts is probably the biggest thing for me too.  

Why DO some carees have such an obsession with their bowel movements??!!  I think in mum's case it's what she worries about, because while in hospital with septic arthritis and then Covid (caught in hospital) she had delirium (mistaken for dementia by the ever changing staff) and she feared soiling herself above anything else.

So now it seems second nature to her to reel off exactly what is going on down there, has gone on, might at some point in the future go on, and when the next movement is likely to happen - and every ache, twinge, burble, rumble and fart!  And how she hopes she won't have to disturb me in the night.  She needs help to use the commode, as she's not mobile, so there's no escape for me!

I love mum and will care for her in her own home until the end.  She asked me to, and I said yes - I've always promised her I would, even when she was mostly independent.  But no amount of love and dedication makes the anguish and despair at the loss of personal freedom go away.  It makes it worth it, not bearable.  How we bear it I don't know, but we do.  

I use my laptop and when mum is settled in her chair and has everything she needs, I play a daft online game, post on forums, gaze fondly at holiday cottage booking sites or whatsapp friends.  I'm not always able to do that much because her needs are so demanding but I found that if I use my laptop as opposed to my phone mum recognises that I'm busy.  

Going for a walk is great if you can, I can't very often.  Going into the kitchen or bathroom and vigorously sticking two fingers up at the world (or even your caree!) helps sometimes.  

Because no, resentment and anger are not wrong, they are perfectly reasonable and acceptable responses to the way life is treating you.

Thank you! Thank u so much for understanding and taking the time to show me a glimpse into ur world so I know its not just me! It really helps, and I hope u are OK too, caring for your mum. X 

Thank u! Its so kind of you to let me know im not going nuts and im not being selfish! Some days it just feels like u can never get away from all the layers ur held under with thier demands! All be it probably unconscious demands! But its still hard! So thank u x 

Hi there

I just want you to know that it is absolutely normal and not at all selfish to feel how you are feeling!  Everything that is happening with your husband is happening to you too in equal measure.

My way of getting though this is by setting myself challenges where I can achieve them so that I at least matter to myself cos it's very difficult to live in the carers shadow of a cancer diagnosis. I've done a swim challenge for macmillan and and am now going to go back to an art hobby. I don't want to be left with a shadow of myself at the end of all this as it will just be myself and my boys. Last year I lost myself to depression and have come out of that but my husband is in that horrible despair now. I can't let myself get that low again, just self preservation.

It's such a difficult and awful time but I wish you all the best thru it. Remember yourself in all this xx

You’re absolutely right- it is too hard. My hubby is terminal and  wants to stay at home until the very end (he was actually born in this house so I can understand that) but then I am haunted by the fact that afterwards I will have to walk into whichever room he was in (I can’t say the d word but I’m sure you get the gist) and see him lying there I haven’t even lost a parent so I have no experience of any of this even though I am 52. I get annoyed sometimes when I can’t get my hubby to go out somewhere , just for a drive to a nice place to grab a coffee or something - a change of scenery. Is that because I want him to get out (I do genuine think it would do him good) or because I don’t want to sit watching him fade away. I know he’s struggling and in pain but sometimes I just want to give a kick up the bum. Talking of which - we also have to have the lengthy discussions about bowel movements. Why, why why? 
On the positive side I am very fortunate that I have a lot of people asking me how I am - which in all honesty sometimes gets on my nerves - what do they really want me to say. They all tell me that I’m being so strong and amazing- but really they have no idea because all I say to them is that I’m ok. IM british - it’s what we do. Stiff upper lip. Oops. That didn’t turn out to be very positive did it. 
So now the positive bit - I have two  journals. I don’t write in them regularly but they’re there when I need to offload. One is for all the horrible thoughts and the second is things to be thankful for - like when we occasionally do manage to do somewhere nice, or out grandbabies come and visit) Once  my hubby is gone I intend to destroy the horrible journal and keep the nice one. 
Secondly I started running. I’ve never been a runner  EVER I have always walked/hiked but that takes a full day so I needed to find something that o could fit into my new care schedule. I completed the couch to 5k and it’s really helped me. When I’m running I can’t think of anything else except breathing and how long until I reach the finish line so for that short  time there is no cancer in my life. And the endorphins help me to get through the next few days. 
Also I’m the early  days of diagnosis i started doing meditation which never interested me before but again it was just a way to get out of the whirling thoughts in my head. It’s 15 minutes that I could just do once my hubby had gone to bed.Finally the biggest tip I can give is accept all the help that is offered. I was so intent on the early days in doing everything myself. He’s my husband and I will look after him - as well as going to work and doing all of the household chores etc etc. 8 months in and  I’ve finally realised that I am NOT superwoman and I can’t do this on my own. I now agree if someone offers to come and cut the grass or take the pooch for a walk before I get home from work. I still go to all the important hospital appts but now I let people take my hubby to the routine ones (like for a blood tests). Something had to give and it’s taken me a while to realise it but it now means I have the energy to cope and I can still have some me time - which generally involves a toddler and a play centre so its not a physical rest but a very lovely distraction. 
Do you have a Macmillan nurse that you can contact -ours calls me every so often to ask about me, not my hubby. I feel like I can be honest with her and can say things to hey that I wouldn’t to my family (because I want to protect them ) 

I’ve just realised how long I’ve waffled on for I hope some ot it helps and that you find some help. But always know that it is ok to not be ok. Just come on here to vent, let it out and then you will find another nugget of strength to carry on. 
Hugs Jillybean 

Yes, I was exactly the same anxiety n depression all last year after the diagnosis n I too do not want to be swept into that again, I had to scream to get any support and I too worry about what I hve left when he goes, he is too suffering now n I want to help n support him but I'm terrified of slipping back to suicidal thoughts again, I've push him to get counselling now so I'm hanging on for that but ur so right! I joined a carers group and an art class! I need to get away from "cancer", thank u so much for ur reply, so helpful knowing I'm not alone x all the best to you as well x ️ 

Jillybean ur amazing! And thank u! I too journal and it helps alot! I'm stealing ur running thing tok I need that, to get away from cancer strangling the life out of me too! And u make some excellent points! Thank u so much, not sure how this all works but if u need a chat please message if u can, I know it's not fb but u have made me think I too can do this, we unfortunately haven't had the d talk yet, it's one thing I'm scared of doing but I know I have too

I am going through exactly the same thing. Message me if you want to talk about it with someone who really knows how you feel x

I sometimes feel I am suffocating...the frustration, the anger, how did it happen that my husband was reduced to half the person he is? I get cross with him when he is muddle headed because of  the drugs hes on, and vague and vacant; if he forgets something I've told him i can blow up and he gets it in the neck...then i feel so so guilty. It isnt his fault. But i resent him. Terrible thoughts and feelings. I do love him so, but it is so hard living with not only the knowledge of where this is leading, but also the person he has become. I wonder if there will be a reprieve when he finishes chemo...