Status
Not open for further replies.

Elaine Ramos

New member
Joined
Feb 22, 2008
Messages
6
Reason
CALS
Diagnosis
03/2006
Country
US
State
New Mexico
City
Albuquerque
Hi All,
New to this forum. I feel overwhelmed with caregiving for husband diagnosed to 2 years ago with bulbar onset. He has FVC 30% and close to respiratory failure in the next few months. We've been married 16 yrs. He is 48 and I am 39. We have 2 girls, 11 and 14. He wants to get a vent so he can live longer. His arms/legs/trunk are still mobile but weakening daily. He uses his wheelchair regularly but can still walk. He has drop foot too and loses his balance more. He lost his voice Dec 2006 and uses a computer to talk. He still drives our girls to school in morning. Watches TV. Organizes his pills. Naps. I do the rest. Not mad, just overwhelmed b/c money is getting tighter and tighter and I have to work less and less so I can help him. I have bad dreams regulary that he is leaving me. He is never sick and cann talk in my dreams but he leaves me because he is mad at me for something or he meets someone else. Do other women/men who are caregivers have the same experience?
 

hearts_and_thoughts

Active member
Joined
Feb 6, 2008
Messages
56
Reason
CALS
Country
US
State
OH
City
Burton
Elaine: Sorry you are having so much anxiety. Your husband will most likely be leaving you before you leave him...I'm sorry to say. I guess your anxiety about that is coming out in your dreams.

I hope that you have a good support system in place. People want to help, but don't know how usually. Don't be afraid to ask others to help with your husband to take some stress off of you. Don't wait too long...you need to maintain your health. I am a very strong person...and I buckled. My sister dropped by the other day when I was having a meltdown and I resentfully asked her why she doesn't seem to think it was possible for me to "fall apart". She told me because I have ALWAYS been so strong. Very true...but we all have breaking points. Don't get to yours before you get help.

Also, this forum is wonderful! Stop in often...it really does help and people here are a Godsend.

Mary Jo
 

Amanda529

Member
Joined
Nov 6, 2007
Messages
20
Reason
Loved one DX
Country
US
State
OH
City
Berlin Heights
Hi Elaine! I agree you do need a great support system. When my Dad was first diagnosed on 8/8/07 i felt my world crashing down. I was depressed, had anxiety, i was stressed out, and i couldn't think even at work. I was worried about losing my dad he was always on my mind where ever i was. I would cry. I went to the doctors and she gave me medication to help me. I feel better then i did but i still worry and get stressed out. I also agree i would get help now before you get to your breaking point. If you need to get something off your chest always feel free to come on this form. We are all here to help each other.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Elaine - I always hate to see such devotion and love come through the pain that ALS brings to the family. It's rotten for everybody, no 2 ways about it! Your feelings are normal, just ask any of our CALS (caregivers for ALS patients.) So you've come to the right place. Feel free to talk about anything. We are here for you! Cindy
 

DonnaJ

Member
Joined
Feb 6, 2008
Messages
25
Diagnosis
07/2001
Country
US
State
West Virginia
City
Culloden
Hi Elaine,

It's all normal. I've been caring for my husband for 8 years. In the beginning, at night, I could swear I could hear him yelling for me and I would fly out of bed and before I knew it I was standing in the hallway with the light on. He would be sound asleep every time. I swear though it was very real. This happened quite a bit in the beginning, now very little. I am so scared I guess that my mind or dreams are playing tricks on me, but it is very real when it happens.

God Bless You and keep you in his protective arms,
Donna J
 

Glenda

New member
Joined
Feb 17, 2008
Messages
3
Reason
CALS
Country
US
State
FL
City
Titusville
Hi Elaine,

I am new here and have not posted much myself. After I read about your bad dreams I remembered a time that was a problem for me as well. What I found that really helped was to get up... whatever time I had the dream... and write it in a journal. I kept the journal for several months then found that I was using it less and less.

It's not much but I hope it helps so you can get some rest. You need to be able to rest and take care of yourself or your body will suffer. Take care of you.

Glenda
 

swmn

Distinguished member
Joined
Apr 7, 2007
Messages
146
Reason
CALS
Country
US
State
Wi
City
marshfield
Me Too

Hi Elaine

I have a very special PALS friend who is alo my mentor in teaching. I have been doing whatever I can to help him and his wife who is quite overwhelmed with all what she is trying to do. I have consistantly had dreams - most containing "Negative experiences" - another friend from the forum told me that she thought my dreams were a way of my mind coping with the eventual loss of my dear friend and mentor... The dreams are hard to wake up to - and usually I can think through why maybe I had the dream that I had relative to recent events - usually something that happened that day... My friend sounds identical to hour husband - though he is 53- and can speak but only very little yet...
I have noticed dreams are increasing as his physical ability declines. I'll keep you in my prayers -
 

LisaM

Member
Joined
Jan 9, 2008
Messages
21
Reason
Loved one DX
Diagnosis
11/2007
Country
US
State
California
City
Los Angeles
You wont often meet a person who will become an expert at the trials and tribulations of caregiving, that is why this forum is amazing at bringing people who share experiences together. We all cry and laugh with one another about our difficulties, yet, for me, deep down it's the most beautiful experience. It's a gift to have the opportunity to say goodbye to someone in this life that isn't promising anyone forever. And our ALS loved ones are teaching us to live if we look closely. I don't dream often but over the last 2 years when I have dreamed of my father who has been suffering for that long, I see him walking and like everything is back to normal. I struggle with finding the strength and the way to balance something like this in my life that on the surface seems to have done nothing more than rob me of my father and time in my life. But, we learn to enlist the help of friends and family and do the best we can. Good luck.
 
Status
Not open for further replies.
Top