Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

I need some advice, please!

juniette
0 Recommendations

My brother was diagnosed with ALS November 2008; he lives in El Paso and I live in Dallas. I am torn, I don't know if I should move. In a nutshell - I want to be there for him, but I am a single parent in Dallas and it scares me to move my children and start all over again. El Paso is a very tough market. Also, my father (my only living parent) moved from Houston in December 2008 to Dallas to be close to me. My heart tells me that I should be there, but my brain tells me I may not make ends meet there. Family is VERY important to me, but I feel as if I'm in the middle of a "family" triangle...there's my children, my brother and my father. WHAT SHOULD I DO???? Thank you in advance for any advice you can share with me.

Explore topics in this discussion:

ALS Falls

10 replies

Steph09

Juniette

You do not mention if your brother is married, his age or if he has children. You read my post so you know why I am in NC. The thing you have to keep in mind is while wanting to move is admirable you can not play the role of martyr. The life, livelihood and wellbeing of your children must come first. That scenario also includes you. If anything, you and your father should encourage your brother to move to Dallas. He may not be in a state of mind to do this now but as things progress it may happen. El Paso is very long way from Dallas just as WV is a long way for me away from my brother. What is your brother's current situation? Is he working? Homebound? You have already stated that you know El Paso is a tough market. I have family in that area and I know that is true. I also have family in Dallas and that is a much more "friendly" environment. I would think long and hard before making such a drastic move that would only benefit your brother. And when he is gone what would you do then? I am here if you need me.

Steph

jodyc1955

There is a wonder MDA ALS clinic in Dallas. I don't know about El Paso. We were originally from Midland, and moved to Austin to be closer to our adult daughters when my husband was diagnosed with ALS in 2006. There is also a GREAT ALSA clinic in San Antonio. I agree with Steph09. A lot would have to do with your brother's situation. If he has a wife and kids, then he is not totally alone in El Paso, and will have the help that he is going to need. If that is not the case, then I would encourage him to move to Dallas, so that you AND your father could help. If I can help you in any other way, please feel free to contact me at jodyc1955@yahoo.com. I will try to answer any questions you might have, and if I don't have the answer, I can get you in contact with someone who can answer them for you. Good luck.

juniette

Thank you both for replying, this means so much to me. It's much easier to talk about these things with people that truly understand and have experienced what I am and will experience. My brother is married with three children and our 3 other brothers do live there in El Paso as well. My whole family lives in El Paso and it is only my father and I in Dallas. He was forced to retire (police officer) early. He can still walk but falls a lot; he has lost the ability to use both hands and it is now difficult for him to speak. There is no way he will move, regardless of the wonderful resources here. I tell you, he does not want anything to do with ALS treatments. I am afraid of not being there while he is still here. I am afraid that once he is gone, I will regret not having been there. I am also afraid of (as Steph asked) what will happen once he's gone. I am so torn I can't sleep at night. Thank you both for the wonderful advice.

Janine

Hi there, If you want my vote it is this. Stay put. I have been caring for my father for over 5 years, he has been in hospice ( at home) for over 3. I love my father with all of my heart but there are times when I resent what caring for him has taken from my life with my kids and husband. I have 2 sisters that live about 5 hours away and they come frequntly to relieve the burden of being one of 2 main care-givers. If I were you what I would do is visit often. Spend quality time with him as a sister more than a care-giver. Help out when you are there to give relief to the people that are on full-time. Ask yourself this: When he is gone where do you want to be. If the answer isn't El Paso then don't go. Sorry to be blunt but as someone who has lived through so many aspects of this disease I think it would be a tragedy for it to mess up one more persons life. You CAN be a great support without moving yourself and your family. Best to you and your family, Janine

juniette

You are all right, I should not move. My children's stability is what I've worked the hardest to provide and I am doing that here in Dallas. That is why I moved in the first place. I have mentioned my concerns over and over and I guess the bottom line is, I don't want my family to resent me for not being there...they tell me how they try and help every day and I am not there every day to help. That is what has caused me to feel this guilt. Perhaps I'm seeking approval for not being there...thank you all again. God Bless

greensmile

i also say you should stay in dallas where YOU feel the best and your children feel the best.you r brother needs to move closer to you if he's able still.otherwise stay in contact as much as possible by e-mail,phone,skype,or visits every once in a while.i know that distance plays a role,especially in texas(i'm a former texan).i know it's hard,believe me.i live in israel and my sisters and brother love in hawaii,texas,and holland.we keep in touch through the skype,e-mail and facebook.best of luck to you,and....never ever give up hope,keep the faith,and keep smiling.we're here for you if you need any help or advice.
hugs and prayers :) :) :)

Vienna

I believe that you should stay put and visit as often as you can. your first responsibility is to your children. they are dependent on you and they didn't ask to be born.
my son has ALS lives too far away from me and his sisters. his wife is carrying all the burden and it is getting too much for her to do so by herself. we are thinking of relocating them to the northeast where his sisters and I can help in his care.
good luck to you in making the decision.

jwagner

Couldn't help adding to this otherwise very helpful discussion. The post above that suggests that caregivers are not taking care of ALS patients and that is why they are dying is a horrible. Guilt is a powerful and sometimes destructive motivator--as anyone who has had to see a loved one go through this disease knows. It is pretty obvious that the previous post is trying to sell product by using guilt. It sure can't hurt to try eating organic, and using supplements to increase quality of life and perhaps slow progression, but claiming a cure?? Stem cells in a pill? Umm wouldnt those break down in the digestive system? Be careful of these folks ...

Per guilt, though I live in the same town as my parents (20 minute drive), and try to assist every week, I feel as though I can never do enough to help my mom and dad (Dad is primary caregiver, mom is on ventilator at home.) I work 50-60 hours a week as a designer and my husband is a full-time plus medical research assistant (works down the hall from a major ALS research facility, actually (-: So do we give up one of our 20-year careers and our ability to pay our mortgage so we can help more? Do we let ALS take more away from our family than it already has?

It has taken a while for me to become comfortable with helping to the best of our capacity on weekends. We bring over a meal -- or weed mom's garden for dad--clean the kitchen--hubby helped dad set up a TV system on the first floor of the house, stuff like that. I am a very squeamish person and readily admit that I am a horrible nursing candidate. I could not comfortably do what my Dad does for my mom. In fact, I have been known to faint just going to a hospital (boy am I in trouble when I get sick). And knowing this (Mom knows me well!!) I don't think my mom would want me to mess with the medical stuff either! It is probably healthiest that I visit, and spend quality time with her (quantity not being an option).

But again, I went through similar soul-searching episodes (and still do). I think we can be harder on ourselves than we should be. Know that you are not alone--and as greensmile says, never give up hope! There is legitimate research being done (just ask my hubby), there are many people working very hard to understand what causes this dreadful disease. Take care and best wishes.

Smilef

I also had a brother that had this terrible disease ALS! He passed away in Jan 2008. I moved to Colorado with my husband in 2002 it was the hardest thing I could of every done. Before we moved we as a family we with my brother day in and day out. I loved taking care of him! He would have done the same for any of us.
All I can tell you is spend as much time with your brother.
NOBODY can tell you do not move closer or do! Only you know what is right. I was very close to move brother. I spent evey summer with him. His last summer he called me and told me he did not have much longer and wanted me and my kids to come and spend the summer with him. I did. I did not want to leave him. I knew we did not have much longer with him.
My brother lived 12 years! He was an amazing man!
If you are thinking you should move to be closer to your brother than do it.

Please email me directly with any questions.... I AM HERE FOR YOU!

I will be thinking about you.

Marcy
Smilef@aol.com

How long has he had it? How old are the kids? How is his wife? I am truely sorry you as a family have to go through this.

Marcy

RochesterBarb

Just one more thing to make you feel a little bit better about NOT moving: it might be very hard on your brother to have your kids around if he is not used to it. You can help by supporting whoever does end up doing the caregiving, seeing what THEY need, so they can continue to function. I helped arrange my sister's care, and when her friends in other cities emailed me or wrote to me to ask how I MYSELF was doing, rather than just about her, it benefitted her indirectly by giving me more strength to continue. Caregiving is extremely exhausting physically, emotionally, financially, and socially.
My prayer is that you will find peace with your decisions, and the clarity of mind to see that your children MUST come before your brother. Let me assure you that all the things your brother is resisting will eventually either become necessities you won't have to encourage, or else will be markers he chose to refuse on his journey. (My sister eventually used everything except traech and feeding tube; but she resisted each and every suggestion of help until she really had no choice if she wanted to continue to live. A traech might have prolonged her life, but she chose not to prolong it at that point. She wanted above all to die at home and not at a hospital. She continued to eat by mouth right up until the end. But each person is different, and we can't decide for them, no matter how awful it hurts us.)
The side benefits of a disease this horrible is that it gives YOU the opportunity to think about what is important in life, and to see how unexpectedly our lives can change at any moment. That helped me to get rid of some things in my life (unfruitful activity) that I decided life was too short to continue to do. My sister's illness helped me to make things right with a few people against whom I had walls up. It freed me to make choices to live my life so that if I died tmrw I'd have no regrets.
Much love to you,
Barb in Rochester

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You