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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 10-27-2010, 11:44 AM   #1
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Join Date: Oct 2010
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missmineau HB User
This is so hard

It has been a little over a month since we have gotten the diagnosis that my mom has ALS. The changes in her have been very subtle as I overly search for anything whenever I see her. Ive noticed more so now that when she gets tired her speech seems to be affected, more slurred. My mom is having a very hard time dealing with the fact that she is no longer independent, because atm it is her arms that are mainly being affected, even getting dressed required assistance. I am very aware that this is only the beginning, and it is going to get much harder, any suggestions? I have started counselling as I know I need to be prepared for the worst. I have done tons of reading, not sure if this is a good thing or a bad thing, so I do know what is to come. I think the worst part is the not knowing. Can the progression plateau for a bit then continue to progress? I am trying to be very optimistic and take each day as it comes but it is always in the back of my mind. How do others deal with this as it affects a loved one? I am also very tired( and probably being very selfish) of people asking me how I am and how I am coping with this? What do people expect you to answer? I am assuming most people dont know what to say. Any advise on how to try and stay strong and keep spirits up within the family would be greatly appreciated! Take care of yourselves and each other.

 
The following 2 users give hugs of support to: missmineau
martinez27 (10-27-2010), rayswife (03-27-2011)
Old 10-27-2010, 03:59 PM   #2
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Join Date: Sep 2010
Location: kyle tx us
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martinez27 HB User
Re: This is so hard

Quote:
Originally Posted by missmineau View Post
It has been a little over a month since we have gotten the diagnosis that my mom has ALS. The changes in her have been very subtle as I overly search for anything whenever I see her. Ive noticed more so now that when she gets tired her speech seems to be affected, more slurred. My mom is having a very hard time dealing with the fact that she is no longer independent, because atm it is her arms that are mainly being affected, even getting dressed required assistance. I am very aware that this is only the beginning, and it is going to get much harder, any suggestions? I have started counselling as I know I need to be prepared for the worst. I have done tons of reading, not sure if this is a good thing or a bad thing, so I do know what is to come. I think the worst part is the not knowing. Can the progression plateau for a bit then continue to progress? I am trying to be very optimistic and take each day as it comes but it is always in the back of my mind. How do others deal with this as it affects a loved one? I am also very tired( and probably being very selfish) of people asking me how I am and how I am coping with this? What do people expect you to answer? I am assuming most people dont know what to say. Any advise on how to try and stay strong and keep spirits up within the family would be greatly appreciated! Take care of yourselves and each other.
I FEEL YOU ON THIS MY MOM AS ASL. JUST DNG IN AUG. IT IS SO HARD SHE NOT TAKNG IT TO WELL ITS TIME FOR A FEEDING TUBE SHE DONT WANT IT. HOSPICE IS COMING TOMOROW. TO BE HONEST I CANT SAY HOW TO STAY STRONG CAUSE IM SO ANGRY WITH THIS DAMN ASL ITS SO AWUFUL. IT SUCKS THERE NO CURE. EVERY ONE TELL ME GOD KNOW WHAT HE DOING . ITS HARD FOR ME TO SEE IT CAUSE SHE SUFFERED ALL HER LIFE SE HAD A HARD CHILD HOOD LIFE AND THEN SH SAW HER MOM SUFFER SHE JUST LOST HER MOM LAST APRIL. I HAVE FAMILY SUPPORT BUT WE ALL ON DIFFRENT LEVELS. I NOT WORKING SO I CAN HELP MY DAD TAKE CARE OF HER SO FINACIALLY WE TRYING TO MAKE ENDS MEET. WISH U AND YOUR FAMILY THE BEST.. I KEEP EVERY ONE THAT HAS A FAMILY MEMBER THAT AS ALS IN MY PRAYERS.

 
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Old 10-27-2010, 08:01 PM   #3
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anxiousme HB Useranxiousme HB Useranxiousme HB User
Re: This is so hard

I know how you feel. My mom was diagnosed with ALS in June 09' (first symptom in left hand- late March 09') By the end of June she couldn't use her arms, by end of August she couldn't walk, by Novemeber eating was very difficult...she passed in January 10'. She battled for 10 months. I was her only primary care giver. I had some help from hospice volunteers to give me a couple hours break here and there. I would leave her to work a few hours and come home...eventually having to take a leave of absence. I left my husband and kids to live with her and care for her.

I WOULD DO IT ALL OVER AGAIN! It was the hardest most difficult time of my life. I was incredibly strong because I had to be. For me, there wasn't a choice. It was my mom...my best friend. She didn't ask for this horrible disease. I was wiped out caring for her (physically and emotionally). I have MS and my disease has flared since all of the wear and stress. Again, I would do it again.

You are doing all the right things...getting support and familiarizing yourself with disease (It's scary to read but it helps you stay one step ahead). You prepare yourself to help your love one get through unexpected situations.

I wish you and your family the very best. I hope you all will find your way. I find myself visiting this site even after my mom's passing...because I know how difficult it is and how it helps to know that there are people out there that have been in your very shoes.

 
Old 10-28-2010, 02:20 PM   #4
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Join Date: Sep 2010
Location: kyle tx us
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martinez27 HB User
Re: This is so hard

Quote:
Originally Posted by anxiousme View Post
I know how you feel. My mom was diagnosed with ALS in June 09' (first symptom in left hand- late March 09') By the end of June she couldn't use her arms, by end of August she couldn't walk, by Novemeber eating was very difficult...she passed in January 10'. She battled for 10 months. I was her only primary care giver. I had some help from hospice volunteers to give me a couple hours break here and there. I would leave her to work a few hours and come home...eventually having to take a leave of absence. I left my husband and kids to live with her and care for her.

I WOULD DO IT ALL OVER AGAIN! It was the hardest most difficult time of my life. I was incredibly strong because I had to be. For me, there wasn't a choice. It was my mom...my best friend. She didn't ask for this horrible disease. I was wiped out caring for her (physically and emotionally). I have MS and my disease has flared since all of the wear and stress. Again, I would do it again.

You are doing all the right things...getting support and familiarizing yourself with disease (It's scary to read but it helps you stay one step ahead). You prepare yourself to help your love one get through unexpected situations.

I wish you and your family the very best. I hope you all will find your way. I find myself visiting this site even after my mom's passing...because I know how difficult it is and how it helps to know that there are people out there that have been in your very shoes.
I GIVE U LOTS OF CREDIT. IDONT KNOW HOW YOU DID IT. IM STRUGGLEING AND I HAVE MY SIS HELP AND MY DAD. I GUESS IM SO ANGRY CAUSE SHE SUFFERING SO MUCH. MY MOM SUFFERED ALL HE CHILD HOOD. NOW THIS SHE GETTING WORSE. SHE HAS THE BIPAPAND OXYGEN AND SHE SAYS SHE STILL CANT BREATH SHE DOSE NOT WANT TO GO THE DOCTOR NOR SHE DOSE NOT WANT THE FEEDING TUBE. WE DO NOT KNOW HER WISHES CAUSE SHE DOSE NOT WANT TO TALK ABOUT IT. I FIND MYSELF CRYING MYSELF TO SLEEP. TODAY I BROKE DWN WHEN I WAS FEEDING HER. I FEEL ALONE MY SIS HIDES BEHIND A PHONE. AND MY DAD DOSE NOT SPEAK OF IT. AND I HAVE A LIL 5YR THAT IS CLUE LESS ABOUT ALL THIS. ANY WORDS OF WISDOM

Last edited by martinez27; 10-28-2010 at 02:22 PM.

 
Old 01-14-2011, 06:47 PM   #5
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Join Date: Jan 2011
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nanette70 HB User
Re: This is so hard

my siter has had als for 3 yrs. here is some quick advice. dont go on hospice until you absolutely have to. as soon as you go on medicare stops paying for new equipment to help your mom live because she is on hospice and hospice is for the dying. look into "talk to me technologies, llc" for communication devices....they are frustrating slow for anyone that knows anything about computers...but its better that nothing. look into an extremly good moterized wheelchair that goes up and down and reclynes. look into a hoyer lift. set up a voluteer schedule of ppl that are willing to come in once a week or once every 2 weeks even for an hour or 2 to help you and her. and just get your minds off things and talk about the outside world. most important is to suck it up and have that talk you really dont want to have.....does she want a vent? a feeding tube? cpr? your local hosital or hospice should be able to help you to prepare both spiritually and legally for this........you have to do this. you do not want to guess what she wants? you do not want to have family fights over this!!! do it ASAP!! my prayer for you is that you get this done this week!
God bless!

 
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