topic Re: ISOLATION in Coping with a loved one's cancer

ISOLATION

juliewho — Thu, 17 Nov 2016 02:16:06 GMT

my husband of 44 yrs has terminal cancer has a lot of pain sleeps most of the time I feel like we are on a roller coaster ride (I am scared of roller coasters) life going up and down last week in hospital blood transfusions etc etc this week home and sleeping 21hrs a day ,but this roller coaster can only get worse then it will crash ,I want so much to help him pay attention to every change but its hard to know what do you accept as thats how it is and what do I get help with ,I am lucky I have an awesome support team but still its me with him 24hrs I am the one deciding everything ,i went to cancer councelling when I could they were awesome would recommend it if you can do it .the biggest thing they help me with is understanding I am suffering anticapatery grief ,I am losing my husband losing him doing things, him making decisions etc ,buggar how am I suppose to live without my best friend I met him when I was 15 I have several friends relatives who have been through this but I am sure even with that I am going to be a wreck what I would like is some advice on how to deal with isolation I have to be home with him,i try and keep myself busy doing quite things while he sleeps tell my friends if they want to see me they have to come visit ,but still spend a lot of time on my own, too much time, to think about my reality and how different it is to most peoples I was hoping by going in these forums that i would hear similiar stories similiar realities some times I will share some of the weird and wnderfull things that only happen to people in our situtions thanks

Re: ISOLATION

BarneySam — Thu, 24 Nov 2016 07:02:07 GMT

Dear Juliwho I am also carer for my husband of 49 years. today the isolation of being here 24/7 really got to me big time. We luckily have been home now since Feb of this year and I know things will get worse but am so grateful for this time together as I know many do not get this time to say goodbye. I am prepared to face whatever comes as it comes and really feel that I was doing a good job of helping him until this week. I lost a dear dear friend who unexpectedly was diagnosed with cancer and died within the week. She has been supporting me through telephone talks which have kept me from feeling like I was going crazy. I am so filled with grief that I will never see her again and was not even able to go to see her family when they came together to say goodbye to her. To top of a bad week one of our dogs became ill and needed a cruciate operation. I found that trying to cope with that on top of our daily routines has really knocked me off the coping path and feel like screaming... My husband also sleeps a lot now. I am not sure what annticapitary grief is but if it means that every day you say to yourself how am I going to cope when he is not here and then be about to scream or cry only to have to bite it back and dress wounds or empty urinals and smile brightly as you try to tempt someone to eat then I have it too. I hear your pain it is mine also.

Re: ISOLATION

juliewho — Thu, 24 Nov 2016 12:36:11 GMT

anticapatory greif is anticapating your greif when you lose your partner but in our situation you are already losing them I have lost my usefull hubby and the one that used to share things with me and the one that made decisions and yet i still have my hubby just now my whole life is about caring for him and yes each day is different some days I cope fine and other days I am so close to tears all day so loseing your friend would be very tough I have several friends I can share rant to ,losing one to cancer now would be so adding to your stress level ,something I take consolation in is I am slowly letting him go so I have time to get used to it a friend of mine lost her hubby suddenly and she was a wreck had no idea what type of funeral he wanted what he wanted done about this or that ,at least i have had time to prepare we have discuss and recorded his wishes so when he goes it will be easier to deal with .I am sorry about your dog I hope the dog is ok now.these things would make you feel overloaded .I try my hardest when I am empting bed pans whatever to be as gentle as I can with him feel I am sending him off with good memories and when he is sleeping I try and do something for me set myself challenges see what i can acheive it may be something as simple as finally getting to that cupboard thar seriously needs organising etc or sometimes i immerse myself in a good book and it is fine to cry tough for your family to watch but girls need to cry . the tempting them to eat thing is tough I would make anything for my hubby but hes not interested when I find something he will eat i repeat it but seriously somedays success is getting one protein milkshake consumed .cancer is a cruel thing both for the person with it and there carers all carers need to be issued with masses of patiances .I wish you well

Re: ISOLATION

Flazum — Thu, 24 Nov 2016 23:03:12 GMT

You're probably also grieving the loss of the relationship you once had as well as dealing with the anticipatory grief. While having your loved one physically still with you is far better than the alternative but the dynamics of the relationship you once had and shared changes so much because of the cancer and I found that really, really difficult to come to terms with.

It is good to have a place like this to talk with others going through similar situations.

Re: ISOLATION

BarneySam — Thu, 24 Nov 2016 23:50:11 GMT

Yes I understand anticipatory now and yes it is an ongoing thing mourning each small and not so small loss of the whole person who was/is your rock and total world. There is also an awareness of the powerlessness and frustration you know they feel as you tackle the jobs the used to do it must be so hard. for them also. Every day I tell him how grateful I am and how lucky I feel that we have this time together to talk and hug and sit together and be in our own home. I am so glad to hear you have such a good support system of friends around you that you can vent to.Yesterday was a very bad day for me so frustrating, such a feeling of confusion and not being able to cope.

dishes left in sink making meals late mess everwhere. But deep down I knew I coulld cope but also knew I wasn't so it really was confusing. Much better day today we both had a big cry and spoke about how we are both feeling and have started the new day putting yesterday behind us. Our little dog Sam is doing well.

you are so right Flazum this is a forum that understands.

Re: ISOLATION

juliewho — Sat, 26 Nov 2016 04:13:58 GMT

I am glad you understand now so hard losing them slowly but i am glad that I have oppurtunities to still love and spoil him every time i help him stand up I hug him and yes he feels losing things too I try and joke about it things like I know now why you married a younger woman so I would be fit enough to look after you now makes him laugh am dreeding the day he dosent reconize me hopefully it wont happen but he can and does get very confused our Dr says that is part of last stages ,glad your dog is ok ,dogs are great sounding boards tell them anything your worst thought and they will still love you .my daughter and I are putting up xmas lights today ,something i can do at home and stop and start and it will cheer us all up think it is only part of xmas I am looking forward to .and yes Flazums is right I feel better for sharing glad some one understands

Re: ISOLATION

juliewho — Sat, 26 Nov 2016 04:15:38 GMT

thank you you are right loseing everything slowly

Re: ISOLATION

BarneySam — Sat, 26 Nov 2016 23:48:11 GMT

Yes Juliewho I also feel so lucky that I am young (ha Ha) enough to carry out what needs to be done so we can stay home together. 10 years older and it may not have been an option we could have been given. The sitting together and the hugs are such a special time. We also discussed our feelings again in the new knowledge of anticipatory grief especially the anger part. He turned 70 today and we have our 50th Wedding Anniversary in March next year and I know he sees both these as goals he wants to achieve. So pleased he has achieved one and who knows maybe makes the next one too. I still can't believe my luck in finding your letter when I needed it most. Helped me get on top again and remember to take it one day at a time but not only that to enjoy the precious moments left. I hope in some way this helps your feeling of isolation too and you dont feel you are all alone in this battle. Imagine even in our isolation we can touch strangers' lives and fiind strength in knowing we are not really alone . So many of us out there sharing and caring. Sending love and strength.

Re: ISOLATION

juliewho — Mon, 28 Nov 2016 21:54:48 GMT

its awesome that I could help you, have loved reading your replies and its great that your husband is looking forward to these big milestones in your life not many people make it to 50 yrs it is a major acheivement, a sign of success .and thanks to this site no I dont feel alone in my battle it is so what I needed there are so many things that happen in our realities that aren't part of other peoples life ie last week i got a delivery a hospital bed vibrating matteress mattress protectors wedge pillow and cover wasnt I lucky irionic yes but it was a massive help BUT didn't really make me feel lucky normal people get normal things delivered .I want my husband to be secure in the feeling of being well loved and cared for and that is my priority and reality.

Re: ISOLATION

BarneySam — Tue, 29 Nov 2016 21:18:57 GMT

I certainly know how you feel saying you are lucky to receive bed etc but it is not what normal people receive as delivery. When we came home from Peter Mac our doc put us in touch with pallative care. It was such a relief to hear from them that they would support us medically and also assessed our house lending us the aids needed for safe access for my husband around the house. They also said they would bring a bed around to help my husband when it was needed.their words lifted such a weight off our shoulders knowing we could be in our own home together after the months of hospitalisation and he could be made comfortable. I am sorry Juliewho that you have both reached that stage now of the bed being delivered and I know how grateful you must feel that your husband is being supported and on tthe other hand the pain you are experiencing knowing what that delivery signifies for you is beyond imagination . I am sure your husband feels so loved and cared for being home with you. The drugs that relieve your husbands pain do not relieve yours. Enjoy every precious moment you have together.

Re: ISOLATION

juliewho — Sun, 04 Dec 2016 00:58:38 GMT

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 ?

Re: ISOLATION

grrlboiwonder — Wed, 07 Dec 2016 05:55:45 GMT

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.

Re: ISOLATION

roma22 — Wed, 07 Dec 2016 10:02:11 GMT

Re: ISOLATION

roma22 — Wed, 07 Dec 2016 10:38:07 GMT

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.

Re: ISOLATION

BarneySam — Thu, 08 Dec 2016 21:46:27 GMT

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.

Re: ISOLATION

juliewho — Sat, 10 Dec 2016 22:13:30 GMT

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

Re: ISOLATION

BarneySam — Thu, 15 Dec 2016 05:43:15 GMT

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.

Re: ISOLATION

juliewho — Thu, 15 Dec 2016 13:18:36 GMT

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 .

Re: ISOLATION

BarneySam — Sat, 17 Dec 2016 11:53:08 GMT

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.

Re: ISOLATION

juliewho — Sat, 17 Dec 2016 22:37:10 GMT

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