ISOLATION

[juliewho]

your right his drugs dont releive my pain ,not sure there are any that could ,spending so much time on my own he sleeps so much its like I an getting ready for being on my own at least now I have a mission watching and listening out for him always vigilant afterwards will be different still I am luckier than most getting heaps of support my daughter visits after work every night and I get local nursing support 3x2hrs of respite which I use to run round do shopping ,post things etc etc ,how do you go with this how do you spend your time ? 

[grrlboiwonder]

Hi Juliewho, and to everyone else who reads and replies to this thread.

I am caring for my 92yo grandmother, so while it isn't a partner/husband I connect with the sense of isolation and anticipatory grief. She has been looking after me since I was six-weeks old and we've never lived apart.
Each day is a rollercoaster, and like you I spent my time trying to stay busy, however just stopping for too long brings up too much anxiety. She has okay days where she might get up for an hour or two and we get to chat, but the last week she's lost more weight and has no interest in food.

I am thankful for being at home with her, however I am no longer a grandchild but more a carer/nurse. I miss our quality time together as she sleeps most of the day and likes to be alone in her room. I try to be strong but sometimes I wish for comfort from her, which she can no loger give. I feel like I am already living alone, and I feel like she is not able to fight to eat or recover from radiotherapy (it's only been two-weeks since she finished). 
Friends are there, and I wonder if I am the only one who wants company but also wants to keep people away to spend what few moments I have in a day with my grandmother alone...?
I hope these forums help us all feel less alone.

[roma22]

I understand the anticipation of grief totally. I have been living with it for 3 yrs. for the first year after my husband was diagnosed I was consumed with thoughts on what will I do without him even waking in the middle of the night barely able to breath and then spending hours thinking of it. I have been with my husband since I was 17 and we have been married 48 yrs, we never have time apart except for working and the odd day out with friends. We have run a business together, raised children , travelled, renovated and rebuilt houses and had a very full life . We are devoted to each other and never are short of a conversation. We are each other's best friend and lovers.  Therefore a life without him is just unthinkable. It took 12 months before I slowly started to settle down and  find a little peace. My husband is very stoic and has maintained his wonderful sense of humour all through this. Our family and friends have been wonderful but we did encounter a couple of friends and even some of my extended family who became very distant with us and we understand some people don't really know how to handle these things. We travelled again after his chemo but only short trips as he had to have his Port flushed and Drs appointments every month...still it's better than none.  I have kept busy with the house, garden and my quilting also our Grandchildren bring a lot of joy (we have seven) . Until my husband had the stroke in August he was fairly active doing a few odd jobs around the house and taking our van for a short holiday down the coast. Now he can't drive  and that has caused him more angst than anything. His cancer is growing and spreading again and there will be no more treatment so Palliative care has been organised. Now I am back to the worry of what will I do without him and it's starting over again. I think about what our life was like before cancer and feel very sad, since my husband had the stroke it has been very lonely as we don't go out a lot and as his speech is all over the place he feels embarrassed when we do go out. He cannot walk far so we now have a wheelchair . I find by being busy  helps me, I sew constantly and garden. I am not worried about finances  I have managed that all our married life, a man comes in to mow the lawns, handyman to do odd jobs and most things I am very capable of but it's the living on my own for the first time in my life is what scares me. It's the BIg decisions that scare me and the thought of what happens when I get sick and he isn't there. I have two wonderful sons but they have their own families and careers to worry about even though they have reassured me they will be there for me and they already have been . It's a terrifying feeling but I think to myself many women go through this all the time and they all seem to cope well. It is so good to hear what others are going through and that we are not alone.

[BarneySam]

One of the things someone said to me recently was "You will be able to get out and about when you have your life back" I was very angry to hear this remark and instantly snapped "This is my life"  Since I have had time to think, I realise that I have also been guilty of the same thought - that of getting my life/freedom back as it was, and thinking that this time caring for my beloved husband with it's limited access to get out and about was so restrictive and lonely.  I now realise that my angry answer  is actually the truth. This is our life and we are living it to the fullest extent we can, and we do try and not think of the restrictions as isolating but find strategies to live within them just as we did when other changes occurred  in our marriage and changed the status quo.  We know we are lucky to have this time as many other don't and we are going to enjoy it by laughing, debating, crying together or just holding hands for as long as we can. 

[juliewho]

know how you feel life right now is so hard its hard to live with no hope nothing to look forward to it is most peoples life to have something to look forward to something that makes you happy but terminal cancer robs you of those normal things I figure people say those things because thats there normal and they cant imagine how tough our normal is . my hubbies cancer has hit fast forward very little conversation buts lots of TLC and injections but yes i still feel I am lucky that I can take care of him and spoil him ,seriously when I got married no one said make sure you love him because one day you may be wiping his bum getting barely any sleep because he needs injections every 2 hours well I do love him more than enough for all of it my xmas present forhim is a lovely photo of us and on frame is written"" I will love you till the twelfth of never ::it has always been his song for me but htink I may need to give it to him sooner rather than later

hang in there I know it is waiting ffor the worst inivetable but its our chance to prove we meant our vows  through sicknesss and in health it will take death to part us 

[BarneySam]

I am glad you are giving your beloved husband his Christmas present early Juliewho as it sounds like it will mean so much to him and give him comfort. You must be unbelievabley tired giving injections every 2 hours through the night.and the nighttime is such a long and scary place to be when you are awake by yourself and others are asleep. I really don't think death destroys love.

[juliewho]

sadly after the 2 hour injection stage we finally got him comfortable and in no pain but peacefull and he passed in his sleep tuesday night thankfully because we had him at home there was no rush my daughter and I stayed up all night talking to him and singing to him he went knowing he was well loved now I just fill numb and have withdrawel syptoms keep going to check on him or talk to him ,because he is being cremated we have plenty of time to plan funeral but all details were recorded awhile ago

and no death cant destroy love he will always be in my heart like in his song ""until the twelth of never"" I read once that greif is love that cant be given, sadness because you cant give your love to them ,well i will bloody well try .love people you love as much as you can while you can .

[BarneySam]

Dear Juliewho how wonderful for him that he died at home with you and your daughter near and  in such peaceful surroundings. Of course you can still show your love for him and he will know. As you said the 12th of never means you can always express your love for him ongoing. He is pain free now and I know you must be grateful for that even though you are experiencing so much grief and sorrow.

[juliewho]

thank you for your kind words I hope you are doing ok will keep checking to see how things progress for you feel too numb to answer any others or offer them any advice