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Sammantha

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Joined
Aug 11, 2007
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501
Country
Uni
State
NC
City
Newport
I have not been diagnosed but i have progression and will be seeing my neuro on the 25th. We are regular visitors about once a month! Anyways most of you know me i have been around for a year. My question is to the PALS or anyone who wants to give their opinion. I live ten miles from the coast in a small town in North Carolina. I grew up in northern N.Y. and that is where my grandmother, aunts, uncles, cousins etc still live. My mother and brother live down here in N.C. My mother works and so does my brother. My husband works way too hard and we still cant make it. We were doing so well for ourselves, i was going to school, working, getting more education for more pay etc. We had our children here and have raised them here. My oldest will be in middle school soon. I fear there will come a time where i will need to have a lot of help and family around me. I call the south my home and i love my house, we worked hard for it. I love the weather the ocean everything! Where i am from it is beautiful but extremely cold, -40 with wind chill in the winter. The only thing is that is where all my family is. My husband is going to need help and my kids will need support from grandma's and cousins. There are a lot of relatives up there that are retired or stay at home mom's who can come visit or help when the time comes. I dont want to wait until i am so bad i need the help because my kids would be changing schools probably in high school. Housing is cheaper up there but my husband is not gauranteed a job. If you were diagnosed with ALS what would you do?
 

awieleba

Very helpful member
Joined
Apr 28, 2008
Messages
1,023
Country
US
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michigan
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oakland twp
Hi Samantha,

I can tell you from what happen to me after the baby, my family was critical. My husband and I had thought with economy in Michigan that moving might be good. (half my friends have moved out of the state). Then after the birth of Grace I got real sick and went into the hosp. for a week. She was 5 weeks old. my husband had to get Jack ready for school, find a sitter for noah and grace. all while staying up with the baby all night and packing her bag etc, etc. (you know what all us moms have to do on a daily basis). I ended up in the hosp again for a week, then again for a week. and mind you inbetween those vists I was really sick and could not do much let alone drive. If it was not for our family, I dont know how it all could of been done. MY mom and 3 sisters with his mom and 2 sisters was soooo critical. We had known then that we could never move away from family. Yes, our neighbors were great and helped out a ton with play dates and making dinners but you feel akward asking to much. Family does help! And your family loves you and your kids like no one else could.

the other thing is that we belong to wonderful and caring church that my son also goes to school. (there are mom's groups and ladies nights etc) My church was the other thing that helped more than words. Every time I was sick the moms at the church would send dinners every other night and care packages. They took care of my son after school, just everyone was sooooo caring and understanding. I felt the love of GOD through then and thier compassion for me. some of these moms did not even know me! We were loved, cared for, helped, during a challenging time by the congregation. MIND you we had only been members there for 5 months! it was not like we were there forever and everyone knew us. I could not beleive it. It made me sad that it took us so long to find that church and know it is home. the love drew us closer to God. I want to now pay it foward there and help others that ill. I dont know where you stand on religion but It was such an incrediable thing for us. MY point is that if you dont want to move, joining a loving and caring (non-judgemental) church family can really help you and your family. NOt just phyisically. Please dont think that I am preaching, just sharing what happen with me and how it opend us up to a new family of caring people. I was just shocked that strangers cared so much for me! just somthing to think about.

Samantha, I have read alot of your posts and I think that you are great. Being a young mom and going through all that you are is just a flat out inspiration to me. You just keep on going, I really admire your strenght in this adversity. It sounds like you are doing ok inspite of it all.

I say, go with family or find a caring family at church.

Take care,

april
 

Sammantha

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Joined
Aug 11, 2007
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501
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Uni
State
NC
City
Newport
thank you so much for your reply................ we are kind of on the same wavelength! My sons went to our neighbors vacation bible school and i went the last day to watch a skit they did... I thought wow these people are like family and they are all here for each other......... Then i had a thought about going because i always wanted to get back in the habit problem is i always end up missing so many sundays i feel bad when i go..... I really think i need to move closer to family, i really need the support. I have been so independent my whole life and kinda to myself. When i had my kids i wanted to be closer to my family so they could feel that unity, that best part was that we always had a good time because it was short visits! I do need my family, i dont know how to go about discussing it with my husband........... thanks April..............
 

awieleba

Very helpful member
Joined
Apr 28, 2008
Messages
1,023
Country
US
State
michigan
City
oakland twp
Hi Samantha,

Does your husband have family were you live?
YOu could research some jobs in the area before telling him, to even see what he could do there.

I have been an over-independent person, also. So, I hear ya on that. I am close with my family but moved out when I was 18 and did it all on my own.(it felt good). My indepedence and not wanting need anyone's help was a liabilty.
My mother in law is so wonderful and always wants to help, I never was good at receiveing it. WELL, when I got sick this spring and needed so much help, I had to take it. I learned that it was ok to let people/family help. They wanted to and were glad to do it. It helped me to let others help and in return I became more close with everyone. It was a humbling time. but i fond out how great people are and how much everyone cares.

please keep my posted on your situation and I wish you luck!

April
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
I KNOW HOW YOU FEEL i HAVE A SECOND HOME IN FLORIDA AND WHEN I AM THERE I MISS MY FAMILY IN NJ . I KNOW WHEN I GET REAL BAD INTO MY DISEASE I WILL STAY IN NJ PERMENTLY. MY HUSBAND WANT TO LIVE IN FLORIDA ALL YEAR ROUND AND SAID HE WILL CARE FOR ME ALONE. I KNOW THATS NOT POSSIBLE,HE WILL NEED HELP.

YOU MUST GO WHERE YOU WILL BE HAPPY COMFORTABLE AND GET THE BEST POSSIBLE CARE.

PAT
 

Carolan

Active member
Joined
May 17, 2007
Messages
93
Reason
CALS
Country
US
State
TX
City
Dallas
Sammantha,

This is a tough call. Is there an ALS support group near you? It sounds like you have established roots in NC, and if you are active in a church, you will most likely receive more help than you ever ask for.

We have several family members nearby, but they don't help out very much. It's "too hard" emotionally for them, so they say (never mind what it's like for my mother who is going through all of this). They do come to visit about once a week and sometimes offer to do little things, but for the most part, they are wrapped up in their own drama.

Anyway, I don't know if moving is the right answer for you, but I know that you will figure it out when the time is right. The issue with your children is whether it would be better for them to be around family (some whom they might not know very well) or their existing friends? There are so many things to consider, and you will need help. It's just a matter of figuring out *which* help would be best.
 
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