Feeling stressed and isolated as a carer

Hello DuckandEgg

I am so sorry that you and your partner are going through this so young.  Your partner displaying his frustrations and fears in a sometimes nasty way is quite common.  Do not take it to heart.  He will have no idea how tired you are and how much energy it takes responding to his needs.  Now he is a bit better it might be time for you to have a day off.

so, do either of you have parents or siblings you can call upon or good fiends to give you a break.  Have you had any input from social services or the gp?  

have you rung Macmillan to find out what you can expect by way of nhs support or care in the community?  

try and rally the strength to get a break organised for yourself.  Take up the offer of help from a friend.  I have had a number of people say ‘let me know if I can help - just say’ so I have.  I get a friend of my husband  to visit for 3 hours every Wednesday afternoon and I go out.  sometimes I just sit in the car.

I also pay carers every so often to help by calling in at lunchtime for 30 minutes  and then I go out from about 10.30,to 3.00 and leave my husband alone.  He can get up to answer the door, if a bit slowly, and he quite enjoys the anticipation about who might come and when and then he gets their life story and tells it to me!

are you trying to work as well as be a carer I wonder?

thinking of you both as you  process these massive changes to your lives and plans and sending my best wishes.  You are not a bad person because you are finding all the care needs overwhelming.  Don’t beat yourself up. At 26 you are but a baby yourself - I am 70 and am finding it very difficult.

xJaneyC

Hi Janey, 

thank you for taking the time to reply, it means a lot to hear from someone in a similar situation. I have tried to explain to him how it makes me feel but doesn’t seem to have worked.

I saw a friend for a few hours the other day after he encouraged me but then got mad when I was late due to traffic. He’s had bad anxiety since the diagnosis and time in the ICU so finds it hard when I’m not there. It sounds like a good idea to try and get a friend round while I’m out to avoid the stress. Covid and other illnesses are the issue because his closest friends have had bad colds recently which has stopped them visiting but I will ask for more help. 

My family is nearby so going to lean on them some more, it helps that my mum is a therapist too. And I’m going to ask his specialists for people that I can talk to or get help from. 

Luckily work have been amazing and given me time off but I am going to try and go back part time when he’s back in for treatment so I can have some normality and social time. 

Thank you again for replying and saying that I’m not a bad person, I really needed to hear that. Thinking of you and your husband, enjoy you Wednesdays! 

Hi DuckandEgg,

What can I do so I don’t feel angry at him or myself?

I would suggest that you do what you undoubtedly did before cancer reared it's ugly head - talk to him and get him to talk to you. 

Cancer is an insidious bastard that will do its level best to come between two people - it will act like a petulant 2 year old demanding everyone's attention, all the time. How both of you react determines whether cancer will win the emotional battle.

In the early days of my late wife's cancer clash, she, like your partner, became super critical of everything I was doing, regardless of how well I was doing those things. After several weeks of her and I snapping backwards and forwards at each other, I realized that this was not who we were.

I asked Marg what exactly I was doing wrong and why she was being so shitty about it, she, after several hours of talking about how we really felt, eventually came to realize that she was simply trying to exert control over something/anything as she felt she was not in charge of her own life any more and I was the nearest, easiest and most forgiving target.

You can have the world's best team of specialists, doctors, nurses, therapist, etc. but the two most important people in this fight are you and your loved one and it will help both of you enormously if you're on the same page.

How can I stop myself from burning out more? 

Don't do what pretty much everyone on this board does (or did) - try and do EVERYTHING on your own 24/7.

Carer burnout is horrible for many reasons. It can sap your self esteem, it can isolate you, it can exhaust you and it can break you. The worst thing is that the worse it gets, the more it prevents us doing what we're trying our utmost to achieve - creating a comfortable, caring environment for our loved ones.

Speaking with the bitter voice of experience, it is vital that you give yourself at least 5 or 10 minutes a day, every day, where you can disconnect from caring. Walk around your garden, go for a walk in the park, meditate, read a book, have a nice hot bath - anything.

It's not selfish. It's not greedy. It's not self centred. It's not uncaring.

If you don't look after yourself, you can end in no shape to help anyone else.

It's OK to get angry, but get angry at cancer - not at your other half (and the same goes double for him).

The man you love is still in there, talk to him.

Peace,
Ewen :-)

Hi panic. Thank you for posting. Just what I needed to read and I hope it helps you too .

Tina xx

Thank you for your comment panic. It has helped me a lot and I am sure many others will benefit from it. 

Carol 

Really good answer, for all of us.  I agree the nastiness can come from feeling so out of control and wanting to control something at least.  I also found my when my husband wasn’t doing anything he seemed to spend all his energy criticising what I was doing.  I found I had to get the balance right of leaving some chores for him rather than me doing it all.  The advice of a 10-minute break seems minimalistic.  I need several hours break, every day. 

Hi DuckandEgg

I am writing having lost my partner only a week ago and already I need an outlet for my feelings. She had cancer of the oesophagus and lungs but because of Covid and the lockdown didn't get diagnosed until June.

Most of the time she was at home with me, as I was her full time carer anyway, but when she was in hospital I noticed how little response the nurses had time to give to any patient, even the worst afflicted.

It is really good to hear how much your husband is getting better, s o my advice would be take a step back and just leave some things for him to do. Rest a while and let him get on with it, if he gets stuck he will appreciate your help all the more in future.

It is so sad hearing that he has cancer like that at his age, but he sounds although he's picking up magnificently.

I was lucky in having a partner who although she had been ill in other ways for years she understood that blaming those trying to help just destroys what help they can give. She was very very strong that way and never criticized my efforts right to the end.

Woooow … 

How u doing right now .

I feel very lonely and alone most of the time as my husband is sick. 
wish all of us like me can get together somewhere and have a drink over a conversation. 
something normal like that seems far gone from my life . 

Hi Sunflower21,

I understand it is very isolating and lonely. I am trying to still get out and see friends but I would like to meet others in same situation. 

take care X