Very depressed

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joni51

Senior member
Joined
Sep 8, 2010
Messages
992
Reason
Lost a loved one
Diagnosis
10/2010
Country
US
State
Al
City
Valley
How do you do it every day, today all i want to do is cry,even though I love my husband very much, he is not the same even mentally. I feel like I have already lost my husband. he never smiles, of course when he talks, I don't understand him, nothin i fix, he really can eat. I HAte this stupid disease with all my heart. Now I am going to cry some more:(
 
I am dreading the day that i am where you are now. It has to be so hard. Im so sorry your having such a hard time. Just one day at a time is all you can do. I love my brother with all my heart and Im not sure I can be as strong as you are. But you should be so proud of what you are doing. Many people wouldnt be able to stick with it. Im sure he appreciates everything you are doing.
 
Cry..cry until you do not have any more tears. I honestly believe that this is the most heart wrenching thing any person can witness. I have cried several times today..and on year 5 since my hubby was diagnosed. Try to find some sweet moments amidst the chaos.
 
Oh Joni, I know how you feel even though I'm the one with the disease. My mind hasn't been affected but now that I'm feeling so much weaker and can't move without help my outlook has sure been affected. My life has become all about being comfortable on my bed and making sure that there is someone here to take care of me. I dont feel like the same man that I was and I hate what this stupid disease has done to my life and to my wife.

I'm so sorry that this is happening to any of us and I'm crying along with you

Barry
 
Joni, I know his speech makes it hard for him to speak his thoughts. But keep telling him how much you love him. I think of Barry, just wanting to be comfortable and his basic needs met. Me too. Expectations are gone for all we once planned, but focus on the love you have under the junk this disease hit you with. Bruce is still Bruce, and Barry is still Barry. Love is soul to soul, and I'm sure you still have that. Try to focus on that love and whatever it is Bruce really needs. Try to let go of all the things (your cooking, for instance) which used to please him and can't help him anymore. Have a good cry, and then think about what you can do, not what you can't.
 
Dear Joni,

"I wisjh I cuold take UR paim away! As I wsa typimg this Ann'ds respomse poppde up. I cuoldm't jhace said it any bettre! I wil; p[ray 4 U & Bruce.
 
I love you Joni.
 
Joni, I wish I could say something to really make you feel better. I wish I could do something to make me feel better. In the last couple of days Phil seems to have lost the last bit of intelligible speech he had left. 99% of what he says is just one long mumble - not even any pauses. I ask him yes/no questions and beg him to shake his head yes or no but he rarely will do that, he only tries to talk more. We have an iPad with a speech app on it, I beg him to use that but if he even does try that doesn't even make sense. It seems as though his entire body has gone through a progression in the last couple of days that would have normally taken about a month.

I can handle him losing anything else, but not being able to hear his voice or bigger not be able to know what he needs is so heartbreaking it is almost unbearable.

Just know you are not alone Joni, there are many who want to help support you as we all work to survive this terrible nightmare.

Stephanie
 
Hi Joni,
The thing that has helped me the most in coping with my husband's condition is weekly counseling. If you can afford it, I highly recommend it. It has helped me live in the present and know that life will not always be like this. Bev
 
Sorry, Joni! It's so hard seeing our husband's go through this. (And, Barry, you were so kind to comment from a husband's perspective.)

We just have to deal with it day to day and hope we are doing the best we can. I know that is cliche, but you always have us here to talk to.

Can he swallow at all? I will PM you.
 
Joni
I understand where you are. We are half way through year 4 since my wife's diagnosed. We have a wonderful support system between my two daughters and my wifes sister and mother but each of will have days like you had today. Just a couple of weeks ago I had to pull my car off on the shoulder on the way to work for a nice cry. Our favorite term for ALS is "this stupid disease" so when I saw that is your post and a couple of others I know what you mean. Ann is right, it's all about the love. I love my wife more now then ever. It's hard but we try to find something to be glad about everyday. Of course Serena still talks well if softly because her lung capacity is so low. Hang in there, your not alone, we understand.
 
Joni I am sad for you. Like Ann says "love is soul to soul" so he is still there Joni. Big hugs to you.
Laurel
 
Xanax...seriously.

That and our local FTD support group. Apparently I am not coping as well as I sometimes think - started seeing a psych also. Finally found a good one who GETS it. Gotta find one that is familiar at least with chronic illness and caregiver needs. I literally read through the bio of every psychologist in the Cleveland Clinic system before I picked one - 45 minute drive every couple weeks is worth it!
 
I can't say it better than Barry & Ann but want to add:

Joni, you're not alone. We're here for you.

Loss of speech, then later communication is cruelly tough on pals & also on cals. They SEEM so far gone from us, different from the person they were and yet speech does not make them who they truly are. Our pals are more than any ability to walk or talk or eat or...

I have cried and raged and gone into a bit of a funk more times than I can remember. I think that is normal for what we are living. Though I still don't like all that going on in me (I too am not the person my pals once knew) tears, for me, are very much part of grieving the loss of my pals as I knew them before and accepting & loving them as they now are. Today of tears I think: better out than in.

Hang in there Joni. Sending love and prayers.
 
Joni,

I completely understand where you are coming from as I am in the same place you are. At this point, I feel like my husband just stares through me. I don't really feel like he is here anymore, which makes it difficult to know how to help him know I love him. I still tell him a lot but I wonder if he sees that there is no emotion in it anymore by me. As Barry said, my husband's only concerns now are for his personal comfort in the bed. It feels like we are in a perpetual grieving process that never ends. One day, I think my husband will live for months, possibly even years. In the last two days, I wouldn't give him a month or maybe even a week. How do we do it? We don't do it any better than you do. We become numb. The crying is more out of an emotional and physical exhaustion. We cry but we are crying that they are dead to us and we cry that they are alive but not with us anymore. We cry wondering why such a beautiful love and relationship had to turn into something so ugly as ALS. You are an amazing woman and everyone here knows it. It is okay to cry and feel lost. We would all wonder if you were human if you didn't. Just keep coming back here and venting. We get it. Also, there are many people here like Ann whose prayers can make a difference in helping give you strength. We will all be thinking about you. Hang in there!
 
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