Moving Forward - ? ? ?

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Miss

Very helpful member
Joined
Apr 11, 2010
Messages
1,782
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
In the Land of Cotton
City
Way Down South
Okay, I know that we are new at this - so be prepared to cut me a little slack. I'm probably not going to word this right.

Now that we have the diagnosis and my husband is on full disability and I'm home caregiving, we cannot seem to figure out what our purpose is. Yes, we have two children that we are attempting to raise - I know that. Fortunately, they aren't too young because they are such afterthoughts in comparison to this disease. It is progressing so rapidly that we barely have time to figure out what to do before the situation changes.

Will this get better as we move farther along down this path? Will anything ever seem normal again? I know we are bogged down in the hell of paperwork and that things will get sorted out. Hopefully, we will be able to get some help in here. I think we are going a little crazy trying to figure out what meaning our lives will have from this point forward.
 
Missy....I can only speak for our situation. My hubby was diagnosed at the age of 39...yes it did seem like the world was going to end. There are periods that things seem to progress quickly. First diagnosis, six months later a cane, then two months later a walker, then one month later full time in a wheelchair. One year ago a feeding tube and bi pap machine. You are going to have to be stronger then you ever thought possible. YOur husband is going to need you and depend on you. Your children will gather strength from you! I have to tell you...even though things will never be the "normal" that I imagined, we have created a new normal for our family. Our new normal is the reality that my husband has ALS and we will do anything possible to make his life as "normal" as possible. Thinking of you and remembering the beginning of this crazy journey.
 
Missy, I am so sorry! I cannot imagine! How old are your children? My boys are 13 and 7, and it's different because they know Grandpa is older. Still young in my opinion, but you know anything over 30 to some kids is ancient!

I wish I had some words of wisdom, I would definitely seek the guidance of any support groups and get help in sooner rather than later so that you may still have some semblance of normal as well as your children!

My prayers are with you!
CC
 
It will only get better if you let it. By that I mean you have to accept what is happening and be at peace with it. I know that is hard but why worry about what you can't change or have any control over. All the worrying and frustration does not do any good or add another day to someone's life, it does in fact take away from ones life. I am a very pragmatic person so I don't spend any time worrying about things I don't have any control over.
I hope you can come to peace with what is happening and enjoy life. You have an extemel important purpose in your life right now as a caregiver. I can only hope you realize how important that is and take some comfort in it.

We try to focus on the positive things and enjoy each day we have together. I also concerntrate on what I can still do and not on things I can't do.
Life will never be the same again - a new "normal” will take over and as time goes by it will get easier.

Put your trust in God.
 
When I first learned my husband has Als, every time I thought of it, I cried. One day I woke up and for the first time in weeks, my inside felt clear and everything felt like it will be fine. At the same time, I knew it would not be, my husband still has Als but that day actually marked a change in me. I am more able to compartmentalize after that. Now I am like two persons in one body. I would separate myself, distance myself, keeping a part of me removed, and be stoic and strong. The other side would crumble - and then cry it out. Like just now wiping the dining table and realizing he is not using it any longer. He can no longer eat and I cried. He is telling everyone he has two weeks to live. Most of the time, life goes on. I continue on - being merry when I am able to, suffering with him when he is suffering. I do believe it is important to compartmentalize, part of dealing with the situation. Tomorrow he will see the doctor about getting the feeding tube put in.

Missy, in many ways I do have it easier. My husband is quiet most of the time, talking takes too much work. He sleeps, watch news or read. Apart from his swallowing problem, speech and feeling very very tired, he is all right. He walks slowly but does not fall. Most of the time, he refuses to use a cane.

ghii
 
Hi, Missy, Here's my hug to you. This search for meaning is something with whice my husband and I have struggled. We have pretty much concluded that on a daily basis, my meaning in life is to take care of him and to love him. His meaning in life at the moment is to love me. As a couple. we find meaning in loving our family and friends, in offering up our suffering, and in humbly accepting the love and compassion that we are offered from others." Normal" becomes such a relative term that is continuously redefined, but yes, we do find moments of normalcy - some times we get so involved in laughing and recalling our past and in making new memories, that we forget for a moment about the ALS. Of course, then it comes back to slap us in the face, but those moments of "forgetting" are precious however short-lived. While you go through the struggle of "meaning" don't forget the legacy that you and your husband are leaving for your children. Talk about meaning!
Love to you. God bless us all.
Claire
 
missy i wish there was some words of widom .i can hear your innerself full of worry and doubts.i go through stages like that to we are human all of have .like joel said live each day as if tommorrow may never come .enjoy what time your family share together.take this one day at a time and believe in the power of are god to help you through the days ahead
 
It just seems to be moving SOOOOO fast. In December he needed help buttoning a shirt, January help pulling up pants, February putting on a shirt, March brushing hair and teeth, April a cane and disability, May a walker and now we are looking at wheelchairs. His speech is rapidly declining, too.

Strength isn't a problem for me. In fact, sometimes I think I come across as hard but, if I get emotional around my husband, he falls apart. I just wish I could figure out something for him to do that would give him a sense of purpose.
 
I hear what you are saying and sympathize! Can you talk him into visiting this forum?

I found purpose in my life by becoming involved here and developing a website where I have shared my experiences with ALS. My defense against this disease is to stay as busy as possible to keep my mind from focusing on ALS. It mostly works! LOL
 
Did you have a purpose in life before? ALS is hard enough to get through without also having to come up with a new purpose in life.

Actually ALS families have an advantage when it comes to purpose, if they want one. Just living through this disease without totally falling apart serves as an example of grace and courage under great pressure. I've had a number of people comment on how brave I am this past year, even though I haven't done anything. I assure you that in my previous 5+ decades of life, compliments on my bravery were quite absent.

Just continuing on, one day at a time, in these circumstances is enough to set a good example that inspires others. If you are looking for a purpose, you could do worse.
 
A little over six months ago, my husband was about to buy his division of the company he worked for, he was involved in various activities and was on the go constantly. When he went on disability, he really believed that he was on short term to focus on his health and recovery. He was shocked when, a week later, he was diagnosed with ALS. I am having a hard time helping him through this feeling that he lacks purpose now.
 
This may sound stupid, but I have some "I'm tougher than ALS sayings". I don't know why, but it seems to help. I think these sayings all the time, and it makes me feel stronger. Like....I will not! let als make me sad! I will not let als run my life! etc. After a while..you feel bigger than this stupid disease. I treat it like it is the devil, and I will not let the devil run my life! Say it enough, and you will become stronger than the disease. Its nothing but a pest! Now...how crazy am I? lol
 
Phil-
Crazy like a fox!:wink:
 
I wish I could get him to visit the forum, but I don't think he has completely digested the idea that he has this disease yet. He's just not ready. The falls this weekend and the weakness that has followed were a real let down. Hopefully, this week will be brighter. We are heading out to take our daughter to college orientation mid week. We're staying in a fully accessible room, so it should be very convienient for him. I hope the soreness from the fall diminishes so that he can enjoy the trip. He has a number of old college friends in the area, so there are plenty of folks for him to catch up with. Thank you all for your concern, advice and words of wisdom. It means the world to me. Keep it coming!
 
Ok, I am brand new to this forum and this is my first time posting here to this group. I have been struggling too as my wife was diagnosed with ALS 2 months ago. We have two teenage kids (13, and 16) that have been very supportive and helpful. What I tell myself everyday is this:

My wife and I have a tremendous opportunity to show the kids how powerful a marraige can be.

We have a trememdous opportunity to show my daughter how she should expect to be treated by her future husband.

I get to show my son how he is supposed to respect and treat his future wife.

I know it is not much, and it may seem corny, but it gets me through the tough times.

PK
 
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