New to the whole blogging thing.
Here is the story, 2 years ago my Dad was found to have CLL (Chronic Leukemia) - lived a very normal life but he did decide to retire from his job of 36 years. In January of this year, his Oncologist started him on a 4 month round of oral Chemo for this Leukemia. Both my brother and I live 8 hours away so we were relying on my mom telling us what is happening. He lost a lot of weight - had no appetite while taking the chemo - which we thought was normal to a point. In May he started complaining of SEVERE neck pain and was just given pain pills by his Doctor. When he went to see his Oncologist in June he was surprised to see Dad's condition and ordered an MRI and CT Scan - with these results it was found that there were Lesions on parts of his bones and brain and liver. He went into the hospital for more tests, to relieve his neck pain he was put in a halo to stabilize his neck. We were told by his new Cancer doctor that there is metastasized cancer in the bones of his neck and hip, his brain and his liver. He was given what was termed as "life saving" Radiation on his neck, hip and brain for about 10 days. We have since found out that it is lung cancer - my mom won't phone the Doctor to find out any more so it is up to my brother and I to do it long distance. My mom is taking care of my dad at home with help from nurses 3-4 times a week. She had promised him she would bring him home, and she did, now she has promised that she won't put him in pallitive care until she absolutely has too which drives my brother and I crazy because it is so stressful and I guess it is her way of coping with this big change and the terminal diagnosis. In the last 7 weeks my dad is probably about 75 pounds - I think he was about 140 at some point earlier this year. It is heart breaking to see this change in him so quickly. We know he is glad to be at home for a time - I mean at home he gets to SMOKE - yes, he is a smoker. My brother and I aren't. At what point does the denial give way to "I know I am going to die"? Seems to us(my brother and I) that our parents want to be left alone so they can deal with his illness in their way - by not paying attention and that drives my brother and I crazy with worry because it is not healthy.
Thoughts anyone?
FormerMember
i understand your story in some ways as i lost my dad to lung cancer in jan 06 it was a short time from diagnoisis.i think your mum & dad are trying to spare you as any loving parents would but probably don't realise the distress it is causeing living so far away is also adding to your pain . i lived around the corner from mine & though i was there every day still felt it was'nt enough ,that was untill i was diagnoised myself with breast cancer in april this year & was on the other side .its a funny thing is cancer you feel so vunerable but you also want so much to be normal & i think that is whats happening its a denial in some ways .have you explained how you feel & that you are worried about the stress that your mum is under i am sure that you have . i am at the moment feeling as though i am being wrapped in cotton wool & though i know its out of love its driving me crazy.my dad knew he was terminal but till the very end he told me he was going to try & cough up the tumor which we know is imposible but he really believed he could his was inoperable mine has been taken away but now i understand how much he wanted to be rid of it. you are right though my love your mum will need more support from health proffesinols etc i hope that i have been of some help to you & if you would like to pm me please do all i can do is send you all my love from one daughter to another take care love treeze xxx ps if he is a smoker going without one will only add to his misery so to him he is just carrying on with the things he as always done xxxx
It is so hard when your parents just retreat into themselves and each other. There isn't really much you can do to stop it, but just try to reduce the 8 hour gap between you. You can stay in touch and give them loving support. You can do something, probably your brother could do that - make a visit, check that they are as Treese says, getting all the help from the community staff that they need.
My father had a mystery illness when he was 82. He spent weeks in hospital half way between me and his home. We lived 40 miles apart. He was brought to my very hospital for diagnostics. They left him on a trolley in a corridor for several hours. He was annoyed that his nurse didn't have any support so that she could go to the loo or have a meal. (I didn't know about it, or I would have gone to be with him). He went back to his hospital at the end of the day. His wrists were bandaged because they were leaking clear fluid in large amounts. Apparently he had lymphatic cancer.
He discharged himself from hospital and went back to his home. He was so happy to be home. His family could visit him in his own room, he could look out of the window at his own garden. His last month of life was really happy. To die at home is really a privilege. It is much more restful. I still remember coming home from hospital to peace and quiet. I was fine of course, but it is a comfort. It is actually easier for the family to cope, if they have enough support.
My friend, whose father had inoperable cancer about the same time as me, told me that he was due to go into a hospice but he managed to go on the morning he was due to go in.
If he wants to go, let him go in his own way. You can show your love by helping him to do that. Then you have to support your mother, which will take up all your concern.
I can understand that you and your brother feel quite anguished at what you see as irresponsible behaviour, and that your minds would feel a lot easier if your father was put into a hospital. In fact "palliative" care is what is being carried out at present (I too have palliative care as I am incurable). At this stage your father smoking will make little difference, and he would presumably find it so difficult and distressing to quit (this IS an addictive drug) that it would only add to his problems. It probably does give him pleasure too, strange as it may seem to non-smokers.
It seems clear that your Mum does have a significant amount of practical help what with the nurses coming in, so it not as though she is struggling entirely alone. However it seems clear that this is a situation like Ruthless has mentioned, where they are both less distressed by him being in his own home, where their memories are, and with the companionship and love of his wife (your Mum) rather than in some busy hospital where no-one has time for him and no-one really cares about how he feels. I know everyone assumes that there are plenty of hospices, but in many areas this is not the case - I was told outright by the Cancer macMillan nurses that it was unlikely that I would get a place in the hospice as there are so few beds (they are funded by charity) - and I find the thought of dying in a dirty hostile institution amongst strangers very disturbing.
I think that the important thing is for you to keep in regular communication with your parents, and make the journey - I know it is long - as often as you can: you don't want to look back later and think , if only.... Please don't try to make them feel guilty because they are not making it easier for you emotionally.
