Brother #2, Tom, who is afflicted with Muscular Dystophy ( like the other three, two of whom are gone) has been in the hospital with pnumonia since Friday of last week.
It didn’t seem so bad and after several days of antibiotics, he was released yesterday to go back to his group home.
This morning the nurses could not wake up ( it is very difficult because he sleeps normally 20-22 hours a day.) and the head nurse was pounding on his chest to rouse him ( in fairness, most of these nurses are little filipino women who just don’t strike me as being anything but dainty.)
He has been bed ridden for at least 3 years and barely has any strength to pull himself over on his side. He suffers from terrible depression ( who wouldn’t?). He has had constant headaches for years and his body aches all the time. It isn’t a life. It is barely an existance.
It isn’t fair.
EMS and Fire Department were called in and they got him to come around. Meanwhile, my mom went in early to be with him and sees all this and keeps telling the medical crew to " let him go, just let him go."
So, after several very uncomfortable hours in the ER, he is now in ICU. Not really with it. His oxygen intake is at 92 (It should be at 100) . This morning it was at 42. That is mostly dead. And, fortunately, one of the doctors, during a lucid moment, managed to get him to state he did not want mechanical means to keep him alive. Thank God.
This does not rule out the paddles and something else, but I forget. God, I hate modern medicine. If he were a dog, he would have been put out of his misery by now. I can only pray he goes peacefully and soon. He might be 50 next month, but I hope not.
My mom, my saintly widowed mother, at nearly 77, should not have to bury a 3rd son in her life time. And yet, she probably will in the next few days.
Please, whatever you believe in, ask for peace and strength for my Mom and my brother.
Thanks.
Shirley, my heart and best wishes go out to you and yours. A few years back my girlfriend spent almost a month in ICU before eventually being stepped down to a hospice and passing away. I knew she had health problems soon after we met but the fact that her passing was no surprise did little to ease the loss.
The following is unrelated to your post and I bring it up because it is the only lingering regret I have from the experience. The stress of dealing with the situation while doing what I needed work wise led me to take a day off from visiting her in the hospice, as fate would have it a few of the those hours I neglected to see on her that day were the last conscience hours she spent. I saw her every day for the better part of her last week but she never “saw” me. The specter of that memory has pained me since it happened.
I do believe I can understand how your brothers passing could contain something of a blessing, some cages kill the flight long before the bird dies. I wish I could offer advice or words of comfort, but when the end is close don’t let your day to day obligations, which will always be there tomorrow keep you from the things you value that might not.
In any case, my e-mail is linked below, if you ever want an anonymous ear or a few bad jokes, you are welcome.
Wow…I’m sorry for everything your family has gone through, and you and your family are in my thoughts. I hope things work out for the best (whatever you feel that may be).
I’m so sorry Shirley. Here’s hoping he doesn’t pull through, if that’s what he wants. Whatever happens, remember that things do change: life won’t always feel like this.
I recall other threads about your brothers. My heart aches for your mother. Poor woman. To have to go through this with one child would be bad enough, but three times is more than I can fathom.
I will go light a candle for your mother and you-for strength, for your brother-for peace tomorrow.
I’m so sorry to hear of your sad news, especially since you’ve endured so much. Shirley, you seem to be such a kind person. You gave me a nice compliment recently and I don’t think I thanked you.
I do so now, and want you to know you and your family are on my prayer list.
My two (step) brothers and two nephews all succumbed to M.D. before they were 40.
If it is your brother’s wish have him sign a D.N.R. (Do Not Recessitate) order stating that he does not want anyone to revive him or attempt heroic measures to prolong his life. That is his right.
I think your mother will need to borrow some strength from you.
You will be in my thoughts for things to move along quickly for the better.
You know sometimes it’s hard to wish for someone to pass. But when you know they have no quality of life and can’t express it you just know it’s time to let go.
Your mother has to be a very strong woman.
I’m so sorry, Shirley. Sending lots of positive vibes to you and yours mom and brother. May he find peace and comfort, and may you and your mother as well.
hugs
karol
This is unbelieveably sad. I hope for the best – whatever that is. I didn’t know that MD was something that runs in families. I worked with a woman who has it, but somehow, it never seemed like she would ever get worse than where she was. I guess I don’t know much about it, but I’m sorry this disease has hurt your family so.
There are over 200 different strains of Muscular Dystrophy. It is a degenerative neuromuscular disease that is inherited, usually passed from Male to male, but I only know about the type my brothers all have, Duchene’s Dystrophy.
Duchene’s lets the person have a normal life until their teens, possibly early twenties, as was the case with my brothers, and then the irritating things like not being able to open a jar of pickles or pick up a coin off the table as easily with your fingers, walking like your toes are curled up in your shoes (clomping) start becoming commonplace.
Gradually, the hair is gone, the belly muscle give out much earlier than us healthy lazy slobs forcing them to belly breath instead of chest breath. They mumble considerably and projecting the voice is an effort. The facial muscle lose their elasticity and start sliding downwards, giving the face a more skeletal look. Arms and legs lose their strength gradually, where standing in one spot, they waver as if on a ship’s deck. Walking is more like staggering with clomping feet and buttons on shirts are impossible to negotiate.
Severe depression is very common. So are painful headaches which medication doesn’t seem to work very well on or cause bounce-back migraines that are worse. The doctor’s aren’t sure why, but my theory is because (as a migraine sufferer) they are not breathing properly their brains are not getting enough oxygen. Not enough to cause brain damage or a stroke, per se, just enough to cramp it up nice and tight.
Sleeping 18-22 hours a day is nothing for my two surviving brothers. I think it is a combination of the MD/exhaustion and just escaping the crushing blows of life into dreamworld. I’d do the same if I were in their situation.
Colds and other mild inconveniences for the rest of us can be the death nell for them. Two other brothers died from pnuemonia. I have been a germophobe for years and friends whom before they had children made fun of me, now they understand why I am a chronic handwasher. ( and I am rarely sick too.) Usually the cause of death is a heart attack, as it is a muscle.
My father died of cancer at 53. Years later, we realize he probably died from the strain of chemo and not knowing he had Duchene’s as the only symptom this big 6’4 strapping man had was the toes of his shoes curling upwards. If he had lived, knowing he gave this to his four boys would have killed him. His father died at 63, and he probably had it too. No one in his family lived past something like 65 and there was a high miscarriage rate as well.
Now we know why.
MD is a devastatingly cruel disease and it ranks right up there with Altzheimers in my book.
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Thank you for your kind words. They mean a great deal to me and my mom. I cannot control what nature or the Forces that Control us intend, but I can be there for my mom and brother, even when I really want to run. While not a pleasant experience, I’d like to think it makes me a better person. If I’ve learned one thing from all this hospital time is great bed side manner and how to pack my purse for long days inside a hospital.
I told her that " I asked my internet friends to keep you and Tom in their thoughts and prayers."
My mom, the humorous escaped nun, " Oh? Are they all catholic?"
" It’s a mixed lot of good hearted people. If you want, I can arrage to have somebody sacrifice a goat or something if you think it would help."
Chuckling, " A goat, no, but a nice fat cow would be nice. Though I don’t want to cook it. "
Tom slept 90% of my three hour visit today. When he was up, he sat up on his own and ate a little and we talked ( well, shouted) as he has lost hearing in one ear to do Wellbutrin. He cracked a joke or two and then went back to sleep. He hasn’t really eaten much in the last ten days, but the antibotics have probably taken any appetite from him. And, something new, as he sleeps, he has spasms in his arms, usually the one that his head is resting on. Kind of odd.
He didn’t seem uncomfortable too much and it was just as if he was back at the group home, only better care and nicer nurses.
Who knows what will happen, but please keep them in your thoughts and prayers.
