Need ideas on how to help my brother

happyfeet · Regular Joined: 11 Dec 2007 Posts: 12 Location: London UK

Hello, I'd like ideas for my brother as to how we can prepare and make the best of what I think will be his last few months.

ksplat

Hello Happyfeet
Thanks for your reply.
What kind of cancer does your brother have?
If you can let me know then I will move your reply & post it on the correct thread for that particular type of cancer.
You will receive support & information from the members of this forum, in answer to your question about your brother.

As for my Brother, we are basically living day to day with him. He has had many ups & downs this year since diagnosis. We are planning to share a family Christmas celebration with him this year....I guess we need to make this one very special with good memories for him & us of course!!
It's hard to advise you what to do...all I can say is spend as much time with him as you can. Perhaps you could do a journal/book for him with questions that he can answer about memories he has of his life. I'm planning this kind of thing for my Bro.
Please reply with info about your Bro's cancer. I am sure we can help you further.
Your family are in my prayers & thoughts.
Cheers, Aussie Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

happyfeet · Regular Joined: 11 Dec 2007 Posts: 12 Location: London UK

Hello Angel,
Thanks, my brother has lung cancer and we are having a meeting with the specialists. Over the course of the day I realised that he should see them on his own before they talk to us. He has mental health problems and has spent his life trying to please others. I feel it's important for him to have control over his situation. This will cause problems within the family, some of whom think they know better etc.

I'm not sure I want to talk about the medical aspects of lung cancer, I really need support in dealing with the issues around family. Although he's not young, he is almost like a child in that he is still protected like one.

I'm sorry this has come onto someone else's topic.

ksplat

Hi happyfeet
I'm sorry to read about your Bro's cancer & prognosis. This is very sad for you & your family.
Are you in the position of being advocate for your brother? You seem to me to be so loving & caring, I am also inspired that you have sought out support from this cancer community.
I too have a Bro with cancer so can empathise with you.
I would like to be able to take my Bro's pain, suffering & concerns away, but this is not possible. He doesn't find it easy to talk about his feelings (I guess alot of men are like this) so sometimes the discussions can be fairly one-sided with us. I try to see him as often as I can (he lives just over 1hr drive from me) & I phone regularly. It's not a nice situation for anyone & my heart aches for him. There is so much uncertainty with this disease & we don't know when his time will come.
All I can suggest is to be there for your Bro & support him, spend quality time with him, love him, advocate for him. I know it all sounds cliched, but this is the position I find myself in with my Bro's condition.
I have also embarked on a journal with stories & photographs & will be asking my Bro questions about his life to include in the journal. It will be a tribute to him & to his life.
My prayers & thoughts are with you.
Cheers, Aussie Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

happyfeet · Regular Joined: 11 Dec 2007 Posts: 12 Location: London UK

Hi, I just thought I would update, I notice that it's been over six weeks now since I was last here. Following the diagnosis we had another meeting just before Christmas when it was clearly spelt out that bro was in stage 4 with metastats to bones and liver.

He's being cared for by my parents who are 78 and 80. They don't seem to be taking his medical care seriously enough. They are assuming he'll die quietly at home. The palliative care lady has been in a few times and is going to a meeting at the hospital. Really though she is not very proactive. He's got piles of medications lying around and I'm not sure he's taking them properly. Mum bought one of those pill dispensers which is a help but I went today and all yesterday's tablets were still in there untaken.

Before Christmas the specialist nurse gave them 2 chemotherapy treatment options but they had not read the paperwork until I forced them to, last week. I don't think he's fully aware of the implications and doesn't want to do anything without their approval (he has been looked after at home most of his adult life - mental health problems).

Anyway I can't get my head round it at the moment, I want to reach him but they are pushing me away. If I do anything (like try to sort out the meds) they take offense, although there are no standoffs, it's enough to unsettle everyone and that's not what I want for bro.

Feel free to be honest with me, I'm very confused and need straight answers from people.

brainman

happyfeet, I am so sorry that your parents have to be the ones who take care of your brother. With aggressive treatment, it is possible for him to live for months if not years. I have heard of people who have lived quality lives for over 2 years with treatment. However, this might not be the case for your brother since he has not started chemotherapy and he is on palliative care. Usually, palliative care means that the doctors do not think chemotherapy will help.

What kind of pills does he need to take? If they are pain meds, then he will take them if and when he needs them. If they are heart meds or meds for other conditions, not taking them will only make things worse in the long run. For example, I have high cholesterol so I am on Crestor... totally unrelated to my brain cancer. However, if I do not take it, I might end up fighting two battles rather than just one. In your brother's case, I imagine that some of his meds are related to his metal problems (?). If he does not take them as prescribed, he will have to deal with that as well as his lung cancer.

How close do you live to your brother? You might have to take a more active role in his care, helping your parents make sure that he takes his meds on time. Maybe calling everyday and asking him if he has taken his meds? I know, it sounds like you might become a pest to him, but it is for his own good and the good of your parents.

You and your brother and parents are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1265

Happyfeet,

I'm very sorry to hear of your brother's diagnosis and the subsequent problems. I don't know much about healthcare in the UK, but are there hospice programs?

It really sounds like a third party needs to be actively involved in this situation on a REGULAR basis, before this whole thing blows up in your parent's faces. Is it possible for you to attend this meeting at the hospital? I don't know what the privacy laws are over there, but someone has to be advised that there are some questions about the quality of care he is receiving. This is not to say your parents aren't doing everything possible, but this is such a load for their older shoulders to be carrying. Most important is your brother's comfort -- now and in the future.

This is a very difficult situation for you to find yourself in and my heart breaks for you. Is your brother in pain? What a shame when good people encounter such rough times. I take it he is on no chemotherapy?

Keep us updated.

Best wishes,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

happyfeet · Regular Joined: 11 Dec 2007 Posts: 12 Location: London UK

Hello again everyone,

It seems I'm back here every few weeks and it really makes me appreciate that time does move slower when you need it to.
Thank you for your replies.

When I last contacted I think we were all trying to find our role in bro's care. My parents really dominate his care (as they always have done), but a little compromise on all fronts has helped the situation.

The Macmillan nurse has been going to see him once a week but has taken so long to actually get anything done. It has been very difficult to watch people 'have a week off' when a week is a lifetime to the people they care for. Ultimately I feel the services have let him down and we can only do our best as a family now.

Shortly after my last post I had a discussion with his specialist nurse (very hard to get hold of) who told me that he is now too weak to have treatment. I had to put to her the question of whether he was too weak when he first had his diagnosis and was told to 'go and think about the treatment options' over Christmas. She admitted that had not been, but he hadn't been very strong either.

This ties into the problem which is that my parents who are caring for him don't see what he needs until it's too late to prevent things from getting worse.
He smoked for years, they would buy him duty free fags.
I would tell him to stop, they would tell me off for it.
He needed an electric bed. They got him a flat one. He's now got an electric bed.
He needed a neck pillow. They said he didn't, he was fine. Later they said I could get him one. He finds it comfortable.
He couldn't lift a 4pint of milk without shaking, I tried to explain to parents that he was weak. He fell coming back from the shop carrying it but didn't tell anyone.
He has bad skin problems. I got told off for interfering with his meds, many of which are creams - parents said they hadn't been told properly how to administer them and made a complaint to the hospital. I got them to read the leaflets and go back to the GP. A week later my father had bathed his feet for him and they knew what they were doing.
He couldn't listen to music, they said because he doesn't want to, he says because he can't get the radio tuned. I've got him a digital one which he can manage.
I don't want this to appear to be a whinge about his care but I do feel they have for a long time just assumed that he would die of lung cancer and that is now what is happening and that was expected. They are from a different generation, a different world where cancer and mental health problems were hidden and swept under the carpet.
I feel angry that my brother has been left in this negative place for so many years, effectively oppressed by the people that love him the most.

But I'm not young enough for anger, and they always thought they were doing the right thing. Our two worlds have now collided, the modern enabling world and the disabling world of the past.

Pbj11, thanks for your astute advice you have done a fine job to get to the essence of our problem regarding getting others involved. The services in the UK for people being cared for in their homes is fairly scarce as the expectation is that the carers are doing the right thing. Often they mean well but can't actually do it. This has now become exaggerated in our case and I think all I can do now is learn from the experience.

When you said REGULAR visits I guess you mean specific times and or dates? That's something I don't do but could work out.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1265

Hi,

When I said regular visits, I meant from a health care worker. One time per week seems pretty sad for what your brother is going through now. Can't the agency that sends the worker to the home be contacted to up the visits?

I don't know how all of this works in the UK, but there are a variety of Hospice groups available in most urban areas of the U.S. If one is not performing up to the standard of care that you feel necessary, than you can switch agencies.

Again, I'm very sorry for this whole nightmare. I know you only want what is best for your brother and sometimes family baggage gets in the way of what is best for the patient.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

happyfeet · Regular Joined: 11 Dec 2007 Posts: 12 Location: London UK

Thanks, he's got lots of good people around him and he's ok for pain relief but there are gaps. I'll ask some questions tomorrow about hospice involvement. My father also has skin cancer and has all kinds of hospice support set up for him so he is aware of the options. I need to look into this so that I can make sure that my brother is getting what he needs.

happyfeet · Regular Joined: 11 Dec 2007 Posts: 12 Location: London UK

Just to let you all know that my brother passed away on 27th March.

I went round to see him and my parents were on the phone to the doctor. He was obviously in distress and was going into some kind of convulsions. It was awful, we didn't know what to do we just wanted him to feel better but he couldn't take oral meds any more. After a couple of hours we finally got an IV painkiller and tranquilizer. I was surprised at the lack of medical support we had. It went on through the day with doctors and nurses popping in doing their bit (when they were qualified to) then referring on to someone else.

In the end all his brothers and myself turned up and we just made sure his last moments were peaceful.

It was 10 days til we could hold a funeral and that was a very difficult time. He is now laid to rest in a proper cemetary, after a funeral where many many people came to say goodbye. He had lots of very very kind words said about him. He was a very very kind person.

Sasha · Regular Joined: 04 Mar 2008 Posts: 49

You are in my prayers, sorry about all you've went through and your brothers passing.
Sasha

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 789 Location: UK

My deepest condolences - but at least you were all with him at the end.

brainman

happyfeet, I am very sorry about your brother's death. Cancer really sucks. You continue to be in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1265

My heartfelt sympathy goes out to you on the loss of your brother. Your care and love for him showed in every post.

I'm so sorry.

May God's peace be with you.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

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