What's the best way to offer support?

A member of my family was recently diagnosed with cancer.  She had been ill for a while but not told anyone. Her husband only told everyone once she was diagnosed and about to start chemo.  The first round of treatments were unsuccessful and  she has just started a new round of intesive chemo which sounds as though it is sadly the last throw of the dice.  They have shared very little news with us and have asked friends and family not to visit the house as she is very tired. While I understand this I am worried that they are both isolating themselves when they need support the most.

I know they have not spoken to Macmillan or other support services, nor are they accepting help from friends or family.  We have offered many times to help with cooking / cleaning or even just to sit with her while he goes out to enable him to have a break but its always declined.  It is as if by accepting help they are accepting 'the inevitable'.  

Her husband is not a man who copes well with difficult news.  When his parents each passed away he kept vigil at the hospital but was unable to be with them in their final moments, instead both times he waited outside while his siblings were with their parents.   

We worry about them so much.  She is obviously gravely ill, and is now very weak, and I worry that she is not getting the emotional support she might need.  He is staying away from everyone who can help him, changing the subject if you ask how she is etc.  What support is he receiving to face the difficult times ahead, whether it be the long fight to recovery or the most feared outcome?  How will their (grown) children cope with having to stay strong for their dad while potentially losing their mum?

My question is, what is the best thing we can do to help? Should we abide by his wishes and stay away? Should we stage an interevention and insist they allow us to help? Neither one feels like entirely the right thing to do, but we don't know what to do for the best.  Any and all advice on how to best support them is gratefully received.  

  •  

    What caring people you are and this is a very tricky situation. All 'patients' and their immediate family deal with this situation in such different ways - some families are open about their illness and others see it as a private matter.  I guess I am a bit of both - I am open to others but prefer to cope with it all within the family.

    If your relatives are anything like me - I hate to see others whose main conversation is about my illness. The Big C is all-consuming with hospital visits/treatments etc and the friends I cherish the most are the ones that I can meet up with and treat me as they always have, and just have some 'normality' with.  Yep, its fine to ask if we are ok but not to delve further if information is not forthcoming.

    My ex-colleagues often turn up with a cake or something for tea that they 'just made extra of' (their excuse I know)) and just drop it in saying they thought it would be nice to give us a night off from worrying about cooking.  Or they will ring if they are popping to the shop to see if we need anything.   They dont worry if they are not asked in.  I have other friends who call to say that they know we are not up for going out and about too much but would we like to pop to theirs for a meal - no cancer talk - as they would love to see us and give us a night off the household necessities.  You may find that the conversation gets around to how they are coping without instigation and if they need to offload a little - it is just horrible to be bombarded with questions - because its something faced every day when you live in the cancer world.

    Maybe hubbie plays golf or likes to go out for a drink and one of the guys could invite him along.  Or you could send flowers to just send a message saying 'Hi - these are to bring a smile to your face - we miss you'.

    Unless you are on this journey it is so difficult to understand how every moment is dominated by the illness and how refreshing it is to get normal interaction from loved ones. 

    I empathise with you and understand how worried you must be but also understand how difficult it is to actually ask for help because you see it as a weakness and feel so out of control anyway, its almost like admitting defeat.  I hope this makes some sense and there is something here which may help you a little.

    I hope your relatiives health improves and that they will get to see you soon - it will do you all good x

  • Hi MoCo,
    I can just explain what worked for us.
    Initially I declined offers of help, however eventually I chose to accept help with friends shopping and sitting with hubby while I nipped out for a wee while.
    Hubby didn't want any visitors except our son for a period, including his parents his sibling or any friends.  We were getting support from palliative care though.  We really enjoyed the days there were no visitors, no medical people, just us.

    However our neighbours did "drop off" meals to save me cooking, the meals could be eaten that day or popped in the freezer for another day.  Friends would drop off a cake or sweet delicacy that they had picked up at the shops. (Knowing his love of sweet things).  A neighbour would walk our dog when I was unable to leave hubby (as he deteriorated I just refused to) picking up the lead from out the back entering via gate so didn't disturb us by knocking at front door.
    I had the home phone off the hook but would check throughout the day for messages and respond by email or text.  Mobiles were on vibrate only as if hubby was sleeping/resting we didn't want interruptions although they would be well meant.
    We had a note on gate basically stating no visitors unless by prior arrangement.
    When we did have visitors it was a case of advising them of topics to be avoided as one of our friends could be quite tactless.  As Max says have normality as much as possible and we chose to avoid talk of illness or of things too far in the future.  When friends did come, (eventually it was a bit of a roster system as too many at one time would exhaust hubby) they spoke of their work, kids, garden anything except Mr C.
    Do your friends kids live at home?  Can you ask them?
    Eventually as we knew time was running out I suggested to hubby his parents and sister should be allowed to visit when he felt up to it.  I felt for his mum (88) and felt she should be allowed to spend as much time as poss with her boy, even if he was sleeping she found comfort sitting at his bedside. 
    I don't know if this has helped at all. I hope so.
    Kathy x
     

  • Hi moco  what a situation you all find yourselves in.!  

    You have to respect what they want and put what you want on to the back gas. Thinking for them is how you will help them.  This sort of compassion is the hardest thing to do.. You see- I suppose we are all different and they choose to grieve in private;  where I want to intervene with my helpful side.  They will ask for your help when then need it. Until then all you can all do is hope and keep strong in yourselves. 

    There is no other answer I am afraid

    I will be thinking of you all in all your pain. 

    Steven

  • Thank you all for your words and advice. It is so kind of you to share details of your own deeply personal and difficult circumstances. Your generosity is much appreciated.   

    It is so difficult to know what to do for the best.  The kind of quiet support that max56 has described has been specifically rebuffed, and everyone has been asked to stay away, but perhaps it is time to gently try this approach again.  I just don't know.  We just want to do what is best for all concerned.  One of our biggest fears is that this isolation is more about what my uncle wants /needs, rather than my auntie. 

    I don't know what we'll do, but in the mean time I'll keep praying for a miracle and that everyone concerned is blessed with the strength to face to road ahead.  Thank you again for sharing your experiences, I wish you all the very best x 

     

  • MoCo,

    This is very difficult. Depending how old their children are, you may want to talk to them about the situation and your valid concerns. I would suggest that you certainly need to talk to her in private, if only to confirm that she shares her husband's view of how best to proceed. Frankly, this is her illness and, in ignorance of the full picture, my fear is that she may not be in control of her own destiny. Not engaging with MacMillan and other services may be her decision, but you need to know for sure that this is the case.

    Best wishes and Good Luck
    Dave