Tired. Just so tired.

I hear you. I'm also good at being strong and keeping things going when I'm around my husband and family. When I come out to work my brain gives in to the worry loop and I become completely ineffective - I too feel tired. But I think, would a week off (holiday/sick) help? I don't think so. I think I just need to find ways of shifting the weight a bit to keep going. If I could find somewhere to talk about things, in person, and away from home for a bit every few days I'm sure I would cope better - I haven't found any way to do that, so I come here from time to time. There is some comfort in knowing there are others feeling the same way.

I am feeling the same my beautiful best friend and husband as bowel cancer seeing him in soo much pain is unbearable but my 4 children just see me telling them yes we are all good I have not slept more than 2 hours but my god that cup of tea before phone start when your on your own and it is quiet is the best. why is this happening to us all 

I completely understand, I am working whilst caring for my husband 57 (diagnosed 5years ago very complicated story) he was self employed so although my wage isn’t great still much needed - work has been very good about it all but I still feel the need to get out and work and be me.  But exhausting when you finish one job to come home and  begin another.   I am so tired all the time - to know others in similar situations gives me comfort yet makes me sad.   My grown up kids give me strength and the goods days make me stronger.  

Hey DesM58...

I'm so sorry you and Helen are having to deal with this.  Being a carer is exhausting.  You want to make your person get better - but you can't.  You have to keep running all the parts of your life you were already doing while increasingly having to pick up the bits that they are too tired for, as well as having to attend appointments, learn about medications, spend time explaining to friends and family what is going on... it's a massive task.  And, as you say, you are carrying around a bucket of dread and stress that reduces your ability to function in your everyday life.

Presumably your consultant or Macmillan nurses have handed you leaflets for services that are available for carers in your area? If not, it might be worth a little research.  I had a real problem with accessing these services because my wife (who had a terminal brain tumour) was not prepared to accept her diagnosis and would get very edgy if I made any moves towards getting support (she felt like I was giving up).

I did get two rounds of counselling (once through my employer's occupational health and once through the hospice) and found it useful on both occasions - just as an opportunity to talk.  I also had a few good friends who I could go for walks or to the pub with just to talk about what was going on.  The smart ones are those who don't try to present solutions but just listen.  Equally (especially when Fi was ill) - it was really useful having phone numbers for her friends so that I could get them to come and be with her for a few hours so that I could get out for some time on my own.

I wonder whether there are things you can think of that would help you to get through?  Anything you are currently doing that you can put down?  Anyone you can co-opt to help you get some time alone on a more regular basis?

Sounds like you are doing an amazing job through really difficult times. I know that things can feel very different on a day to day basis - I hope that you have had a couple of better days.

Pete

Hi Pete thankyou sorry to read your journey think your right I,ve kept everyone away from hospital because all of the cold and flu virus so felt alone now at home today he still wants people and our grown up children to stay away but they need to be here and i could do with someone to hug and a different face not sure if we are being over protective he caught covid in hospital at christmas he was in because of his bloods confirmed blood clots and anemia said he had a bleed somewhere but once he caught covid sent him home to come back later date. Week later ambulance called agony being sick and body cramps found massive blockage to be cancer. Think because everything has happened soo quick still in shock but he is still having banter with kids. Lets see where this road take usthankyou for being here for me

Hey Jkee...

You are not being overprotective... you are doing the best you can in a difficult situation.  We decide what to do based on the informatin we have and then beat ourselves up later about things that we could not possibly have known!

Glad he is still able to laugh with your children.  We found that a great source of strength.  Keep your family close and get them involved with the caring as much as you can.  It will be important to everyone later down the line that everyone was included and should give you some opportunity for support along the way.

Keep going - it's tough, but you've got this...bug hug...

Pete

It’s so bloody hard being the strong one all the time.

It’s so hard to understand the detail from a few paragraphs, but I wonder if you need to think about the role your children are playing. I know you say they’re sensitive, but if the worst was to happen you couldn’t hide it from them, and if you wear yourself out and become ill you can’t hide that either. Is it time to perhaps bring them in a little more - perhaps some family councilling? 

You can’t carry this on your own.

Thank you the children live away from home alone and i always feel they are looking for positive in everything I say so that is the way I have delivered it to them but they are asking a lot and I am giving them the information would be nice for them to be here and do the paper work hopefully will see them at the end of the month x

Hey Jkee...

Oh my gosh... I remember feeling like I had to package what I was saying to people. Partly, I think people want to stay positive for your benefit.  One Sunday night, I lost it with my dad - I was so tired of people telling me it was going to be OK when I had done the reading and knew that it wouldn't (slightly complicated by the fact that my wife really didn't want people to know what was going on).

It turns out one of your jobs as a carer is counselling your friends and family and helping them to come to terms with a situation that you haven't really come to terms with yourself. And it is hard for them because from their perspective you are the one dealing with the thing - whereas they can only stand helpless on the side trying to be supportive.  And everyone is so terrified of cancer that the burden is unimaginable for them - whereas you have no choice but to get on and carry it.

But... here is the good news.  My extended family was an unbelievable resource for me throughout Fi's illness.  Even though they live an hour or so away and could offer little in terms of practical support, they were (and still are) constantly checking in and making sure we are OK.  And it turns out that that matters a lot.  Just being available when I just want to talk or cry down the phone is a huge thing.

It sounds like you and your husband have a great relationship with your children and you have apparently worked out for yourself that you need to bring them more fully into the team.  it will be a shock - but people are resilient and you are going to need all the help you can get.  My kids are 17 and 19 (14 and 16 at diagnosis) and they have been unbelievably resilient and helpful to me.  I don't know what I would have done without them.

We eventually had an army of people helping to keep us afloat.  Friends, neighbours, family and professionals.  The key thing I was told is never say no to any offer of help.  And of course I did sometimes say no (some people just can't cook, and that's a fact!) - but it's not a bad principle to start with.

Pete

Thankyou pete every word is soo true I have started to allow odd visit but it makes him tired and obviously we dont want any coughs glad when they have gone think when warmer weather is here will feel better xx