Advocating for CALS needs and rights

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Atsugi

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Joined
Jan 11, 2011
Messages
5,921
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
A lot is said about "CALS need to remember to take care of themselves."

The implication is that you need to keep up your strength so you can properly care for your PALS.

But that is only part of the truth.

As much as I care about my PALS, and hope to help some other PALS, I must admit that I can't even pretend to know what is on a PALS mind.

And frankly, I hope that I'll never truly personally understand the PALS experience.

But CALS also have very real concerns. Like it or not, we have to think about our own issues.
How do I get a role model for my boy/girl? Losing the breadwinner? How much of the insurance for our kids college, and how much for me to live on? Should we move away to avoid the painful memories? Should we stay here for the kids' stability? Am I still a part of my spouse's family, once he dies? Shall I observe our anniversary in a special manner? Should I encourage the kids to follow mom's old rules of the house, or shall we move on and invent totally new rules of the house? Should I remarry? Can I attract a new mate? How? When? Can I afford to live without a new breadwinner? These are solidly serious issues.

Then of course, we need to ensure the Advanced Directives, Social Security, and Trust Funds are set up properly.

The reality is: We are the ones who have to bury them, so we need to discuss frankly how to do that. We need to be able to imagine our lives without our PALS without being criticized for it.

CALS DO have the right to feel sorry for ourselves. CALS DO have the authority to plan selfishly for ourselves and our family. CALS DO have the responsibility to tend to their own sanity, for their own sake.

(And I know for a fact that my PALS would 100% agree with me on this.)

Although PALS are concerned about their family's life after ALS, they will not actually walk in our shoes! CALS should have a safe place to discuss her post-PALS world without having to tip-toe around the sensitivities of those who will not face the challenges of the post-PALS world.
 
Thamks, darlin, for your wisdom. We are following in your footsteps.
 
Mike, I think about all those hard issues everyday--while at the same time thinking about today's problems; keeping everyone happy, keeping my husband healthy, adjusting his wheelchair, getting the car fixed, cleaning, cooking, running my business, taking care of my dad, emotionally supporting my kids blah blah blah. we all do it I know but it is really tough day in and day out .

I can't help but think about the future after ALS...the happiness that I still have my dear husband is overshadowed by the facts that he will probably suffer and die from this crap disease and I will be all alone and facing all the issues you addressed.

I think one of the toughest things for me after my husband's diagnosis was learning to live in the present and let go of the dreams and plans for the future. I admit--I was always thinking about the next vacation, the next weekend, the next whatever. In reality--as a cals, I have to still plan for the future but it looks like more of a nightmare than a dream!
 
I love all of you CALS. You give and sacrifice so much for us. I know you carry the weight of the world on your shoulders it seems. I love to read your post..... vent all you want all pals should stop and read and realize how special you guys are. Thank you
Felica
 
As much as I hated this horrible disease. At times, I found myself envying my sweetheart, because I knew his pain, this trial for him, had an end date. That he would no longer suffer, struggle, hurt, or be sad. That yes, he was mourning our loss together, but there would be a point in time in which his suffering ended. While, mine will never end. I will always have all the memories, the tears, the sorrow, dealing with my children's sorrow through the years, reliving painful memories for thier sakes, planning a life without him when all I want to do is lay down beside him and die. Please don't think of me as evil or selfish for envying him, but I knew there would come a day when he would stop grieving our loss, and I would continue to grieve our loss for a lifetime after he was gone.

One of the things you talked about was remarrying. I simply can't. Two things would have to happen, and one thing they just couldn't promise me. 1.) He would be void of any family (no-inlaws). I have had my fill of inlaws to last me a lifetime. 2.) No man could promise me, that I would go before him. Because, I honestly, could not go through this a second time, already been down and gone through this before. Once, is enough for me, thanks.
 
My husband and I talk quite openly about all manner of things for the here and now and for after I'm gone. I've written many instructions for him and have also written the obituary. No subject is off the table and we're both pretty practical; not given to emotional inhibitions, so no worry about sensitivities.
 
I've had a rather quiet day except for the noise in the garage - men from our church are building us a wheelchair ramp, Bless their hearts! I've been re-reading a lot of the posts on this forum and really consider myself lucky. Why? My husband and I have had 40 wonderful years together, we have lived, laughed, cried and mourned together. We lived our ultimate dream - traveling across this beautiful country of ours in a RV for 6 great years. I read here and see so many so young and it saddens my heart. My hubby is 71 and of course we were supposed to be together forever but now our forever has a end coming. But, we got to live our dream. I hate that so many are so young and leaving young children behind. I cannot not fathom how hard that must be. Please understand that I'm not bragging about my life, I just didn't realize that ALS could strike it's venom on ones so young. My heart aches for you and you will be in my prayers for God's guidence. It really makes me so much more grateful and able to face what is ahead.
 
Thank you for posting this. I cried when I read it because you actually articulated all those things I think about every day but am a little afraid to admit I do. It's a relief to know that I'm not alone with those thoughts and feelings, and that they are keeping other people up at night too.
 
Not a doubt in my mind that my dear husband got the short end of the stick out of this deal and I get the easy out. Always appreciate your honestly Alsugi.
 
I always thought that my kids would be all grown up so if something did happen to my parents like becoming ill that I would have the time. Did not expect that my mom would get this. It would be so much easier if it didn't get any worse, if she would even stay as she is now but I know that is a pipe dream. I'm really close to my mom use to do alot w her. Now its hard cause I got 2 kids in school and 2 soon to be 3 little ones at home. I feel guilty because I can't always be there for my mom. I have been losing it alot lately ever since she started to get worse and the fear of losing her comes to mind and how much more worse she will get because she dies is she going to get. I know I still have her and she is able to talk and move around alittle bit but I wonder for how long. I HATE thinking about it all the time. My mom gave me what she calls her last wishes but that was even before she diagnosed. She says she feels different like she has no feeling about it. Don't know what she means by that. My dad wants to talk to my sister and me this summer I know I'm not going to like it. But I'm glad my still plans on doing things like when I have my baby she still wants to stay w me in the hospital and plans to stay acouple of nights at my house in the summer. I know things could go bad quickly as its been a year since her symptoms started, just remembering going online and looking to see what she could of had. She waited to go even though her symptoms got worse over the months. She probably thought it was something fixable. She knew after it started affecting her speech and swallowing something was wrong. I remember looking at the symptoms of lou garrets and hoping that it wasn't what she had because all her symptoms were only affecting her right side speech and swallowing. Infact the first neurologist she seen just blew her off because her symptoms didn't make sense to him and told her that if her speech didn't get better then let him know and she could see a therapist. Now looking on how much worse she has gotten in a year scares me. I'm afraid to dream or to make plans, I fight with my thoughts night and day and when I dream she even has ALS in them. I try to keep my hopes up but it seems when I do she tells me something is getting worse. I find myself trying to spend more alone time so I can get myself together so I can stay strong for my family and mom. I don't want her to know how much its affecting me and my fears and thoughts. I just want to keep cheering her on and be with her fighting the monster and trying to stay as normal as things get. I don't know about you CALS but it would be nice to a day where nothing is brought up where you just try to be normal as much as possible. I feel bad for my mom because she has to deal w this every day not knowing if when how will she get worse. Having to deal w people constantly asking her how she is feeling and calling her. I think she would like it more if they would try to treat her normal too. I just don't know how to imagine her not there and my kids missing there grandma the one who took them to the dollar tree when they would spend the night. When my kids have grandparents day at school and she isn't there or to see them at concerts or musicals. My girls writes about going to grandmas or just being w grandma all the time in their school work and it breaks my heart to know that one day sooner than later that she won't be around. I do take it day by day and just concentrating on the now, but it is hard sometimes when she is declining whether its her speech, swallowing or movement, its just a reminder that she is getting worse. I try to treat her no different than what I did before, and I think that helps and instead of getting mad that she cant do something I am more understanding. One of my aunts asked my dad if he would remarry I don't know how he reacted though, but he told my mom. Its just insane that there's nothing to stop or halt this. I just hate the fact I can't do anything to make my mom better and one day I won't have a mom and there will be no more mommie/grandma days
 
Jessielf, thanks so much for sharing so much.

You're such a good, I want to say lover, because you're doing an outstanding job of loving your mom, dad, and kids.
That kind of person comes from good people. Your mom must have been an excellent role model.

Your mom's depressed. Treat it.
Stay in touch, we can all help each other, both emotionally and substantially.

-- Mike
 
Jessielf,

give your self a break--you are hurting right now and that is normal. Someone you love has gotten a terrible diagnosis, and you are suffering right along with your mom. you are at the right place for help and support.

with love,
 
Mike she is on meds for depression even before she was on them way before she was diagnosed and her Dr even up them after she found out.
 
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