Feeling exhausted, fed up and selfish

Hi,

I am sorry you are so tired today.  I'm not sure if I can help in any way, but just to say I understand how you feel.  My husband was diagnosed with secondary stage 4 liver cancer in March and given 6-18 months to live.  I was 7 months pregnant with our 3rd child.  I've since had our baby, home schooled our other 2 children, cooked, cleaned, etc. while he has endured 1 year of chemotherapy, still on it.  

I had the same feelings this week of just needing a break as I was really worn down.  Are there others you can ask for help for some respite?  I've had many people offer to cook meals to help take off the load.  I also am a woman of faith and find watching hope works video on YouTube, listening to music with my headphones on, meditating with the calm app (specifically the stress section) helps at times.

Hope you find some small moments in your day to lift your spirits and give you some rest.

Hi I can relate to both of these. My husband was diagnosed with a tumor in his bile duct in November 2020. He's had exploratory surgery followed by major surgery in January. 60% of liver, gall bladder, bile duct and lymph node removed. Now chemo. Winter lockdown with cancer is pretty intense. I have been working, cooking, cleaning, washing, physically and emotionally supporting my husband, emotionally and practically supporting my teenage sons. Have felt guilty about enjoying being back at school teaching. 

I can relate too though my circumstances were different.I was caring full time for my elderly disabled mother when I got bladder cancer.Mum went into a home while I had major surgery.Eight months after my op mum’s funding was stopped and I had to have her back home.Social services did find 2 carers to help but I really struggled with all the bending and pushing mum’s wheelchair.Mum developed a heart problem and ended up in hospital.She now has a permanent nursing home place but is totally bedbound with end stage dementia.Try to find some time just for you,even if it’s only a few minutes each day.I found sitting quietly in the garden helpful.If you are offered help do take it.Unless you have been a carer you can’t fully appreciate how stressful and exhausting it can be.Best wishes Jane 

My heart goes out to you.  It really isn't easy or ideal.  Enjoy your time teaching, we really do need to look after ourselves so we can look after our families

I feel for you.

You are not alone. My husband was diagnosed in Feb 21 & started his chemo on 2nd March. He runs his own business but can be around at times to help with the kids. He usually takes the kids to school in the morning & he does the weekend cooking. Since he's started his chemo is has been needing more rest so I have been taking the kids to school, working with children all day the coming home to do the cooking, washing, getting kids to bed then preparing for tomorrow & tidying up before I sit down (which is unlikely to be before 9pm having been up since 6.15am). Usually I get a bit of respite at the weekend but not now & also this week the kids hockey, rugby & taekwando classes started back at the weekend. 

I feel shattered too. My husband has his 2nd infusion tomorrow & I have taken the day off work. The school I work at is very good. They are actually encouraging me to take sometime off for myself. It's hard to keep everything together for the kids when he is struggling. I feel lucky that other than cooking a different meal now for my husband (he is on low fibre diet) there isn't much I need to do for him. I often feel like I would like to go to my parents to get 'looked after' for a day or 2 & also to get some help with the kids. My daughter has just turned 10 & this is the first time I've ever felt like I need to have a break from them as I feel like I'm running on empty. 

Looking forward to doing very little tomorrow but know that the following days or weeks will be tough again. x  

Hi SomersetToStoke,

You're not selfish and you're not awful.

You're human and we have limits (physical and emotional) and you're reaching yours. Most carers have been where you are now at one point or another.

You need to take care of yourself - carer burnout is all too common and usually done for all the right reasons - we want to do everything we possibly can to make their time as good as possible. My late mum used to call this "being stupid for the right reasons".

If you don't take care of yourself, how on earth will you be able to look after anyone else?

I found myself in a very similar position to yours (but without the added burden of a toddler - that's a full time job in it's own right), trying to get everything done while shielding my wife from how hard it was and how run down I was becoming.

After 6 years, it all came to a head when my youngest grandson asked if I could have a sleepover at his house rather than him coming to our place for the regular Friday night grandkid sleepover. When I told him I had to stay at home to look after Nanny, he said that his Dad (my eldest son) and Nanny had worked it out and Dad was going to stay with Nanny and I could have a sleepover at his place so I could get a full nights sleep because all the grandkids could see what I wasn't the same Pop I used to be.

How come kids can see what adults can't? Oh, to have the wisdom of innocents.

Talk to your wife about how things are wearing you out. Let her know how it's affecting you. You may need to tread carefully so that she doesn't think it's her fault.

It's not you.
It's not her.
It's bloody cancer!! 

Take it easy mate. Give yourself 5 minutes every night just for yourself. Even if it's just sitting and doing nothing. Make it your time. Rather than thinking about what I needed to do tomorrow, I used to focus on what I had gotten done that day - all the little things; like a foot massage for my wife, cooking a really nice meal (that may or may not have been eaten), getting on top of the never ending laundry, recording her favourite TV shows and making them ready for her to watch - the more little things I could list, the better I felt about the day and about myself.

Take care.

Peace,
Ewen :-)

I realise my reply may be out of date, now, but I'll wade in anyway, as others may also be in your position. 

You don't sound selfish, just tired. That's quite a long slog you've been through, over several months. 

Your wife has obviously been struggling, but nothing that you've said suggests she's unreasonable. I would have thought, therefore, that your idea of a week home with your parents, once her treatment is over, is something she'd positively welcome. It's a very modest amount of time off, after all. 

I hope that's turned out to be the case, and that you were able to discuss it with her and come to some agreement. Having the odd day out by yourself, at regular intervals, might also be worth exploring. You seem to be doing a very good job in the caring role, but you obviously need to pace yourself. 

Hope that's of some use. 

Thank you all. Truly, it has helped just opening up (albeit anonymously) to say how I felt at the time. As an update, my wife has completed her course of chemo as she was taken off of it early due to the severe reactions she was having. She has now had her mastectomy and has entered her 2nd week of recovery which brings its own challenges. Between finishing chemo and her surgery though, she recommended that I visit my parents for a weekend when Covid rules allowed me to stay overnight. I took that and went by myself for the weekend, the first time I'd been without my wife for years. It was exactly what I needed. A hug from my parents and being able to speak completely openly without worrying about how my wife would interpret my emotions was just so therapeutic. I was able to help with a bit of gardening and able to just sit in silence listening to the countryside around me.

When I came back, I was able to talk it out with my wife more clearly and together we were able to work out how I could still be her career, my niece's guardian and work 40 hours but still find time for me. At the moment it's more balanced and we both feel better able to deal with it.

Thank you all for being there to offer your words of advice. It meant the world to me.

Hi SomersetToStoke,It’s good to hear that you managed to visit your parents.It must be a relief that your situation is a bit more settled.Sending my very best wishes to your wife with her treatment.You have a lot to juggle so please take care of yourself.Love and best wishes Jane