Finding it hard to cope

  • 14 replies
  • 49 subscribers
  • 1173 views

My husband was diagnosed almost 9 years ago with renal cell carcinoma.  It’s been a roller coaster during those years with various treatments, including immunotherapy following removal of his left kidney.   After his last scan in March we were told there is no further treatment possible and he has just months to live.  I am finding the last few weeks incredibly stressful.  He’s been in hospital three times with pneumonia since last November and had a week in the Hospice in April.  He has now got yet another chest infection and his mobility is virtually nil.

Our three adult children have been so supportive but obviously they have work and young families so majority of caring is done by myself.  My husband, usually an easy going and caring man has become very demanding and difficult to care for.  This week my very close friends arranged for me to join them for an afternoon tea and my son and daughter were going to sit with my husband while I was out.  However he got extremely annoyed and said he didn’t want anyone sitting with him!  I said I would not be able to go out then as I didnt want to leave him on his own.  Our daughter said she was already on her way and when she arrived she held his hand and said that I needed to have a break.  He just said he was dying and wanted to be left alone.  This all happened ten minutes before I was due to leave and I was so upset as was my daughter.  I said I wouldn’t go but she insisted I did and told me to bathe my eyes and freshen up and go.  She persuaded her Dad that she would sit in another room with her book and he wouldn’t know she was there but that she wouldn’t go and leave him.  I did go but the shine was taken off what should have been a lovely afternoon and an early birthday treat for me.  I was on edge the whole time.  

I am starting to feel resentful that I cannot have a break at all now and although I understand he is feeling frightened of what is to come and is generally very unwell, I am so tired and emotional myself that I’m feeling it so hard to cope.  I wake each morning and dread another day the same as the last.  I feel I’m grieving even though he’s still here.  How do other careers cope when they begin to feel its such a burden.  

  • Hi Lynne, it’s always challenging when you know a lived one is dying, you begin to grieve for the life you both had before, add in the personality change and it makes it a whole lot worse.

    My Nana had Alzheimer’s, in the end it was liver cancer which took her life, but for 10 years our family grieved for the person she was. It’s probably not much comfort but it is normal. 

    To be honest I don’t think we ever actually cope, we just plough through, and we forget that we’re people too. I know I didn’t really cope at all through my husbands treatments, it looked like I did on the outside but if someone got through those first defences they’d see how much I was struggling. 

  • Hi Lynne

    Sorry to hear of your situation.  I fully understand as I have a similar one.  My wife has incurable lung cancer.  Her family live 400 miles away.  My family live 15 miles away.  I have numerous grandchildren as does she.  She is on oxygen and is not good at using it.  She has always been a bit anti social so has no friends in the area.  I am the opposite.  I now feel that I can't get out or do anything I want.  I feel bad visiting my children.  My wife wants to move closer to her family.  I am literally torn apart.  Every day is a compromise, a balancing act of emotions. 

    I hope that you find some sort of solution.  I get how bad it is

  • Dear Lynne C

     I’m currently in a very similar situation. My husband was diagnosed four months ago and has been in and out of hospital too. I barely know him. He isn’t talking to any of us really other than asking for things he needs. 
    how to cope with these feelings. 
    it dawned on me a couple of weeks that this stage of our lives together will be so temporary. So I’m coping by acknowledging my resentment and accepting that I feel guilty about the resentment and reminding myself that I don’t want to feel guilty after he is gone. 
    it’s really really bloomin hard and I’m longing for it to be different but then I get a shock when I remember what ‘ different’ means. ‘ I’ll be a widow ‘ CryCryCry 

    this is how I cope. I hope it is helpful to you. 

    I send strength to you through the Internet 

  • Dearest Lynne

    I too am taking care of my husband who has similar diagnosis he is a typical stubborn Alpha Male. Its been getting on top of me the last couple of weeks hes gone downhill drastically and I just keep breaking down and crying. Its important to have time for yourself and not to feel guilty (easier said) we have to to remain strong so we can care for your loved ones.Sending lots of love and a big hug xx

  • Thank you so much for taking the time to reply.  It's much appreciated. 

  • Thank you Jenny for your kind reply. It's very much appreciated. 

  • Thank you for your reply. My husband has been in hospital again for just over a week.  He's been really poorly with yet another bout of pneumonia and is bedridden at the present time. Your comment about not feeling guilty after he's gone really struck home with me as I have realised that's what will happen if I keep feeling resentful. I am visiting him twice a day and am trying to think of things to tell him to try and keep his spirits up. He had an MRI scan today because of severe back pain, and I am dreading hearing the results tomorrow. Best wishes to you both. 

  • God bless you Lynne, you’ve been through so much already and now this :( I’m thinking of you sending you strength and a big hug to get you through the next few days. Whatever the outcome somehow you will find the strength to deal with it. You are amazing and your husband is lucky to have you by his side. Stay strong xxx

  • Hi Lynne, it is tough being a carer and also to look after your own needs. 

    My husband was diagnosed 9 years ago with kidney cancer. He had his right kidney removed in Feb 2014. Cut a long story short,  over the last 3 years he has had several operations,  gallbladder removal, appendicitis,, that was removed. Then last year, what we thought he was doing too much in the garden, Dr gave him exercise to do. He actually had a tumour on his spine, in total he had 2 radiotherapy and they can't do any more due to were this tumour is and the bone around it. As time went on we noticed his balance & his walking was not very good and needed a walking stick.  He would go out with the dog and push himself to do it just to keep the muscle working.

    Now he has partially lost the use of his legs this has increased over 4 days. So fast it was very scary, if he fell (which he did) I would never beable to get him up. We were getting him ready to go into hospital anyway for assessment and a MRI scan.

    It was hard work getting him into the car, but hay we did it. We did have bad news to say his cancer has spread to other parts of his spine. so we are getting equipment into our home to help him get around.

    I know feel more anxious because I don't know how long we have together. Doing this all on your own is hard. But it has changed who you are, we have both change in personality, learning a new way to live.

    We are just trying to plan in small steps, our 8th wedding anniversary, trip to a county show that are coming up. Higher a mobility scooter to get around with the dog to be as normal as possible. 

    My feelings are numb, I feel sad, scared, lonely all the emotions I want to cry but it won't come out.

    My thoughts are with you Lynne, keep us informed on this page & let us know how you are doing & your hubby.

     

    Jodie97

    Sending big hugs to you all

  • Hi Jodie, your story is so very similar to mine.  We got the results of his MRI today which wasn’t what we were hoping for.  Although his lower spine, where he’s been having such a lot of pain due to spinal stenosis, remains about the same, there is an area at the top of his spine which is suspicious.  They are concerned about his liver function and he has had an ultrasound scan this afternoon.  He cried this morning and said he doesn't think there is anything more they can do for him.

    I fully understand your feelings as I feel the same.  I am frightened at the thought of him suffering and am so upset that I can’t do anything to help with his emotions.  

    Like you are planning, we did try to make the most of things before he was admitted again.  We bought a mobility scooter for him and on the days he wasn’t up to using it due to back pain, I took him out in the wheelchair.  However his mobility has now got to a point where we will no longer be able to do this.   

    I do hope you get to the county show and have a lovely 8th wedding anniversary.  i will be thinking of you and hoping for the best. Xxx