My brother is declining

[Mary-Lynn]

I am new to this site. I am very grateful for the support.
My 53 year old brother was diagnosed with ALS in April of 2011. He is a hand therapist, a cyclist, and a photographer. He lives in NJ and I live in MA. We are very close, especially since the birth of his twin daughters 8 years ago.
The past two weeks he has declined significantly. He can no longer walk. His manual dexterity has diminished. Thank God he can still work, as he works in a PT/OT facility and has a lot of assistance. He has availed himself and his family to the services at the U Penn ALS Center. I am so thankful he hooked up with them.
This is not about me. But this week, I have been inconsolable in my grief about my brother.
I am sad and angry about the losses. Though I make frequent trips down to NJ to help out with the girls, I am sad that I cannot spend more time with him.
I'm sure so many of you have gone through this. How do you come to a place of acceptance and not let the grief rule your life? I am on meds for bipolar depression. I'm sure they help to a certain extent. But I miss him. And I am so sad.

 

[Ms. Pie]

Hi Mary-Lynn. I'm so sorry about your brothers ALS diagnosis. It's rough for everyone, I know. It's so important and will help your brother very much if you can be strong for him. I know I cannot do this with grace without my husband and family and their strength. If they were to fall apart, I'd fall apart. And if I fall apart, they would fall apart. We keep each other strong. Help your brother do this. Help him be strong.

Come here and rant if you want. There are lots of loving, knowledgable,and understanding people here that can answer any questions you may have. Let us know how we can help.

 

[KellyGirl]

Hi Mary Lynn sorry to hear about your brother, hang strong for him especially for those girls. He's the first person I've heard in Jersey thought I was all alone with this Ugly Disease in this state, there are no clinics or support groups here by me, I go into NYC for the clinics, I too am losing dexterity in my left hand and balance when walking, I almost wish if I could pick to lose the legs and keep my hands and get my voice back.......wishful thinking.....good luck to your brother and to you!

 

[whistler]

I can feel the strong bond you have with your dear brother Mary-Lynn. I wish there were magic words to soothe your pain but sadly there are none. You will find the strength you will need. You are human and with all the blessings that brings part of that human journey is what you are feeling now. Look at the wonderful sharing and caring you have been so lucky to continue to have with your brother. Keep building those memories. I know it is an old saying but you do have to take one day at a time. Every one on this site is with you, you will be alright. Bless you and your brother, Whistler

 

[tammyg]

It is so hard. Just remember the man upstairs has a plan. Wish I could figure out what it was though. You need to be strong for him. I can understand the sadness. When I would leave my dad's I would cry all he way home.You might have to come up with a plan. He will need more and more help with the girls. Good luck to you, and I am so, so sorry you have to be here, but you are at the right place with your new extended family now. Rant, rave, cry, we will always be here 24/7.
Only a couple of people here from New Jersey? Maybe it something good in that water. LOL

 

[Mpiresteve]

You have to try and stay strong for him. I've known a lot of people with ALS. Each of them have been very strong people, whom never gave up the fight. Their loved ones also, must be strong.

It does strike me though that your brother was an active person. Also, everyone I've known to have ALS, have all been very active people. My dad, grandfather, both were very much into golfing. My Aunt is a postal worker in the city. They say ALS is triggered somehow. I'm starting to believe maybe we should be couch potatoes

Anyways, sorry to hear about your brother. He does need you to stay strong for him. Good luck!

 

[Mary-Lynn]

Thank you sooo much!

 

[beckysuenc]

Mary-Lynn
So sorry to hear about your brother. Try to relive all of the good times you have shared.
I was real close to my brother and thought I would leave first.
That was not in God's plan. I have a lot of wonderful memories as I am sure you have.
Cry and rant all you want. A lot of wonderful people here.

beckysuenc

 

[HelenL]

It is so hard, and the crying seems to come in waves... sometimes I can talk perfectly fine about this disease, other times, like now, I have tears running down my cheeks. Just know that you and your brother are not alone, and hopefully you can connect him to this site as well. I've learned an incredible amount of info here, both in daily caregiving tips, to planning ahead, and being able to talk to people that know what you're going through... and will go through. Best yet, I have many friends here.

You do have to stay strong for your brother, but that doesn't mean you don't get to grieve the losses either. Just do them away from him, or perhaps, with him when HE needs it.

And yes, medicine does help you keep an even keel... it won't take away the anguish, but it does lessen it to the point you can deal with it.

What also helps me besides my family and friends, is the fact that I have this forum... and my family here.

Good luck, and look for the Come for Tea thread and join us when you're ready.

 

[CGAR]

Mary-Lynn,
My thoughts are with you.
I have one brother who, unfortunately tried to take my disease, and turn it to his advantage.
It's sad, but he and i have not spoken since Christmas (and only because it was my mother's wish to have us both together then.)

You show heartfelt compassion, and strength for your brother. You're a good sister, and a loving person.

Love to you and your family.
Casey

 

[kmendsley]

"How do you not become overcome with grief?"

-May sound cliche, but literally...you take one day at a time.

It is good every once in a while to take a glance at the 'big' picture, when you are in that space. But you should not dwell and obsess on it because it does not help....esp. I am sure with also dealing with biploar which has enough ups and downs in intself! :]

I am sorry for your brother's decline and I will be thinking of you especially in my prayers tonight. Take care.

 

[ladyrider]

One day at a time sweet Jesus, one day at a time!

build as many memories as you can.

Blessings to you, Vickey

 

[IluvNY]

Hi Mary Lynn sorry to hear about your brother, hang strong for him especially for those girls. He's the first person I've heard in Jersey thought I was all alone with this Ugly Disease in this state, there are no clinics or support groups here by me, I go into NYC for the clinics, I too am losing dexterity in my left hand and balance when walking, I almost wish if I could pick to lose the legs and keep my hands and get my voice back.......wishful thinking.....good luck to your brother and to you!

Kelly - My boyfriend also lives in NJ and was diagnosed 5/2011. We have our first appointment with the ALS clinic in NY on 3/19, he has been seeing a neurologist at UMDNJ since being diagnosed but it seems a waste of time as the Dr. does nothing except draw blood and have him extend his arms, legs and off we go. He has been telling us for months that he is waiting for FDA approval for stem cell therapy. I asked how many ALS patients he has treated and he seemed a bit uncomfortable with my questions but replied that he currently has 6. I don't believe him...there's something about him that I don't trust and I can't put my finger on it. Why does he want to treat my boyfriend? So he can say he has an ALS patient and get hoorahs for the stem cell therapy? Sometimes when we go, he has an intern check him and he forgets to give us the blood tests results. How often do you go to the ALS clinic and do you recommend their facilities? Do you drive to your appointments? Just wondering since they say there is no cure and no meds that are really beneficial, why make the trip? Why go to the dr's anyway? At his last appointment he was seen by a well known ALS/physical medicine and rehabilitation Dr. who stated "I don't think you have ALS but another MND and I'm not sure which one and some people get better" Huh? I think maybe he said that because he is not progressing as "quickly" as expected. His pulmonary tests are 100, but he's only been diagnosed for 10 months. I pray for a cure and I pray for you and all others who are suffering from this bytch of a disease. I wish I could shoot ALS right in the heart.

 

[pmbenb83]

Mary-Lynn,
I'm so sorry to hear that your brother is declining. I agree with all of the above. Staying strong can sometimes be harder than it sounds. Some days I have to take it minute by minute and remember the time that we are given with our PALS is a gift. (There will be plenty of time later for the severe hurt, heart break.) We mourn a loss of function each time, but then pick ourselves up and get on with the daily business of living, loving and making memories. Being with him as much as you possibly can is all that you can do and I'm sure knows that too. Don't feel guilty, because he knows your heart is with him always. We have skype and use it to keep in touch with family and friends who can't visit often. Maybe you can pop in to see him via Skype on the days you can't be there physically.

Good luck to you and your family.

 

[Ms. Pie]

Remember that we all are headed in the same direction. Enjoy every day with the people you love. These are the days.