Oh hon…hugs
You and your family are in my thoughts.
I only have one brother, and no matter how many times I say I can’t stand him, could live without him, etc., I don’t think I could go through watching him die. You have my best wishes and my prayers, Shirley.
Shirley, I can’t believe I almost missed this. I am so truly sorry for the pain your family is going through. You will be in my thoughts and prayers.
{{{Shirley}}}
Shirley-
I lost my brother to pancreatic cancer three years ago. I feel so bad for you, to have to go through this pain again and again.
And your mom…it hurts so very much to lose a child, let alone TWO.
You and your family are in my prayers. And in my thoughts, and I am holding you in my heart.
I wish you peace, and love and serenity in the face of this unbearable situation. Hard to come by, I know. I wish there was something more helpful to you that I could do…but I know that there is nothing I can say to make much difference. But I care, and I hurt for you.
((((((Shirley)))))
Much Love,
Scotti
Shirley,
If I could do anything for you, I would. In a heartbeat.
I’m so sorry. I’ve never experienced anything like what you’re going through. I sincerely hope everything works out for you and your family.
If you need to talk, my email and AIM is in my profile.
My thoughts and prayers are with you.
-Dave
{{{{{Shirley and family}}}}}
I think I need to go hug my brother, like RIGHT NOW.
Update:
On Friday they did a brochostomy (I know I butchered the spelling of the procedure) Basically they dropped a line through his ventilator into his lungs to get a sample of what in the hell it is down there making him so sick. The drugs he is on are not working to make him better, but he isn’t declining either.
On Saturday they performed the tracheotomy. He did well and had to lay flat on his back for 24 hours. He does not require as heavy as sedation and when the morphine wore off, my mom could see his shoulders shake and his eyes tear. He doesn’t want to die like #3 did. That was really hard on her.
Today the results from the brochostomy came back and they are pretty sure that he has a pulomonary embolism and are giving him blood thinners. I’m not sure what this all means. This is the first chance I have had to go on line at home in quite some time and I came here first before searching web MD.
I wasn’t there saturday or today. Saturday, I helped my mom move #2 personal effects from the group home where he was at to back home (movers moved his furniture), then I went home with my kids to clean the house in prep. for my son’s 3rd birthday party. I am also pretty sick (as the kids are) with a lovely cold and nasty cough. (Naturally, of the three sicko’s in the house, I am the worst off.) I haven’t been sick since December of 1999, and then, oy, boy was I sick.
Scotti - So far, two brothers ( out of four) have died. Two more will more than likely die the exact same way, Pnuemonia related because of MD. I don’t know how my mom bears it.
Please keep Tom in your prayers. Pray that if he has to go, that God takes him and not my mom having to make this decision. Pray that it happens when she is not there. ( She is there from 9am until 7-8 at night. She won’t leave his side, even for a hour away to come to easter dinner or my son’s birthday party.)Pray that if he lives, that he doesn’t sink into a terrible depression (he suffers terribly from depression, as one might imagine)and waste what time he has left away in bed doing nothing.
I know this sounds cheesy and corny, but all the thoughts and prayers really do mean a lot to me.
Holy shit.
Thanks for the update, Shirley. I somehow missed this thread before.
I don’t really know what to say. I hope your mother doesn’t have to make that horrible decision…
I wish you and your family all the strength in the world in these difficult times. I’m not religious, but I’ll be thinking of you. Take care.
My thoughts are with you and your family, Shirley. I am so sorry your family-- especially your mother-- has to go through this.
thank you for the update.
the courage and grace of you and your mum are truly inspiring.
I am so sorry, Joan. You are all in my prayers.
Dammit, Shirley.
I feel so sorry for you and your family, and I really, really wish there was something I could do. I never figured out praying, but you and your family certainly are in my thoughts. I sincerely do hope you all will get through this somehow, and - if that’s not what happens - that your mother will be spared from that decision.
Your amazing courage (and that of your mother) shines through your posts.
Other people have put it way better, still: I wish you strength, courage and peace of mind.
S. Norman
I’ve gone through a lot of shit like this in the last year, and been sick myself. My best friend that died last year learned from being put into the life or death decision spot two years before , for her mother and uncle. Sandy and I discussed things that she or I would never have talk to others about.
The worst part in her life was having to make the critical life death decisions for her mother and uncle. They had no prior statement made up, and no other family members would even answer the doctors.
This weighed heavely on her mind even before the Leukemia diagnoses for her. She arranged ahead of time for what to do, under what contitions. Her passing was hard, but the hard decisions weren’t left for others to decide. Please make a document up with your health provisions, before someone you love has to decide for you.
I have another friend that is going to reach a crisis point in his life tomorrow. It’s not his personal health, but someone very dear to him. All I can do is be there when he needs someone to talk to.
My point was not to hijack this thread, for I feel the pain of Shirley Ujest and her family. I hope for the recovery of you brother with all sincerity. I want to urge people to make a living will to releive the family of these soul wrenching decisions. It’s your life, make these decisions, other’s may choose other than what you wish.
You might know more of what I speak, knowning I was Phobia.
(Excuse me I have to give water for the dead. Reference Dune.)
Update:
My brother had his trach done last Saturday.
My mom finally got through to the doctors and nursing staff what she had been trying to get through to them since day one. That with MD, in this advanced stage, a person does not breath at 100% oxygen like you and me. Voice projection is nearly nonexistant for them.
Brother #4 only breaths at 50%. (He is in therapy to help him with this.)
Brother #3, is at about 60% which quite possibly could be at his normal breathing rate. Once my mom got through to the people with the degrees and titles (most of whom really no nothing about Duchene’s Dystrophy)and brother #4 ( a nurse) explained in medical jargon, the doc’s and rn’s changed their prognosis and outlook on him.
It took nearly 10 days of my mother being patient and repeating it over and over and over, ad nauseum, until the friggin light bulb went on in someone in charges head.
They now are fairly certain he does not have a pulmonary embolism.
The Pnuemonia seems to be going away. He isn’t as drugged up as much and he is agitated because of all the tubes.
( Who would be.) He cannot communicate at all. They are trying to wean him off the vent.
It looks like he will pull through this, but have to go one to a continuing care place for who knows how long.
He is still a “no code”.
Harmonious: I agree completely with you that people need to discuss this grim subject with friends, family and loved ones and draw up a Living Will. Living Wills are not valid every where, but it can really help the surviving family members make a decision much easier.
When #3 was on life support, he signed the necessary paperwork some years ago OK’ing the removal of life support if there was no hope. On his form he wrote “I have lived my life.” No truer words had ever been written by him.
Shirley, best strength to you and your Mom to help your brother through this. My heart goes out to y’all.
thank you, shirley. it’s good to hear that things are looking more hopeful for your brother.
My thoughts are with you and yours. Take care Shirley.
Shirley, I’m sorry to hear about brother #3’s passing (and I’m sorry I didn’t see your threads earlier). I hope brother #2 has continued to improve. Please do keep us updated.
I can’t remember if you’ve told us before, but what kind of muscular dystrophy do your brothers have?
add my sentiments to the list as well. I have all the admiration in the world for people having to deal with issues such as this. have watched too many situations.
do you have some one who can ‘spell’ you and your mom from time to time? (I know she won’t leave at the hospital, but some one to run errands or whatever?)
Shirley, my thoughts are with you (one of the classiest dopers on the boards) and yours. I know that you have the strength and dignity to deal with whatever comes your way.