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. ... View more

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. ... View more

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.  ... View more

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. ... View more

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. ... View more

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.    ... View more

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.    ... View more

Hi Alta My husband has just recently come out of hospital after 4 months when our world was turned upside down with a diagnosis of cancer. We had to go to Melb to Peter Mac (fantastic and dedicated people) but this meant we were not home with friends and neighbours for 4 months. I am answering your query because although family was a fantastic support I tried not to bother them to much with the daily shocks and yes they seem to come daily thick and fast. It was my friends at the end of the telephone I was able to vent with. I think it was the distance that helped I could unload while they listened and listened. I knew they wouldn't jump in a car and drive down unless I asked which I didn't as it was listening ears I needed and visitors I didn't need. After venting and a good cry I could face the next day of unexpected dramas with more equilibrium. So don't downplay the importance of the listening voice at the end of the telephone it is often just what is needed. xxx Denise ... View more

Thank you Free for your interest and input to my query. Bed rails were tried by the hospital and they posed a challenge not a deterrent, then he has further to fall from the top of the rails. The hospital then brought in a special bed which lowered to the ground and he was unable to stand and walk from that position. They could then raise it when he was supervised to do dressings and when he needed to go in a walker to the toilet or shower. I have thought about just sleeping on a mattress on the floor but then I cannot get him up easily into a wheelchair or walker from that position. I am pleased to hear that things are resolved for your mum I guess I will take heart in that as it is early days yet. ... View more