ISOLATION

[juliewho]

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 

[BarneySam]

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.   

[juliewho]

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 

[Flazum]

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.

[BarneySam]

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.   

[juliewho]

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 

[juliewho]

thank you you are right loseing everything slowly

[BarneySam]

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.

[juliewho]

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.

[BarneySam]

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.