A Year Ago Today..

[Jason's Dream]

Wow, .. Its soo hard to believe that 1 year ago today our lives were forever changed.

I can still remember that day like it just happened.

Going into that office, searching for answers, wanting to get help for Jason. I can still remember the colors of that room, how small that room felt, even the smell of that room. As Dr. Overman listened to Jason's progression of symptoms, as he had Jason flex his feet, his arms, .. sticking out his tongue.. walking back and forth down the small hallway. I can still remember him saying, "I think we are dealing with a motor neuron disease, but I want to do one more test to confirm what I think it is.", and breathing a sigh of relief, thinking we had dodged the bullet of ALS. Oh, how I was wrong. Watching him stick the needle in his extremeties, watching the screen, and hearing that unforgetable "popping" sound. And then ... what will forever be etched in my brain... Jason and I holding each other's hand as he announced his diagnosis. I will never forget hearing my sweetheart get those dreaded words. "You aren't looking at 15, 10, or even 5 years. You are looking at 6 months to 2 years. You have ALS or what is commonly known as Lou Gehrig's disease. This is a terminal illness and there is no cure for it. I will refer you to my mentor who only works with ALS patients..." My heart stopped and a sense of shock and unrealness seemed to set in by the time he got to "6 months to 2 years". I am losing my husband, my best friend, and love of my life. William is losing his father. Will this little one who we just found out that we are expecting even get to meet thier amazing Dadda? I'm going to be a widow. ...

Once the doctor finished, he said he'd leave us to take whatever time we needed and to come out when we were ready, and he left the room. The room started to spin, we were hugging, crying, as we knew that was the end of our dreams, our future together. Now what do we do? How do we deal with this? Who do we tell?

Time is precious, and escalated, as we were told within the next 6 months, do whatever we can while he still could.

I can still remember walking out to the parking garage. Jason was emotional, understandably so, but in excess with the disease. He wanted to tell his family. He knew it would be soo difficult to tell them, and with his emotions, he wanted to tell everyone all at once. But he wouldn't be able to get the words out, and I knew, I would be the one to tell them. To look at his Mom, his Sisters, his Grandpa, and tell them thier worst nightmare just came true. Jason wanted to do it, and wanted to do it the same night. He was still soo emotional, he couldn't be around, while I made the calls to his family to gather them at his Mom's house to give them the news. I can still remember talking to his Grandpa as Jason was walking around outside the car. The conversation was hard, as he wanted them all to be told at the same time. "Can you be at Pat's at 6pm?".. everyone knew we had this appointment... "Yes, but I want to know now!"... "I know, but Jason wants to tell everyone all at the same time, and so I am abiding by my husband's wishes"... "Okay, but was it good news?"... "We've got answers, Paul." That seemed to suffice his Grandpa and so we hung up. As we drove out of the big city, it was soo hard to not tear up. We were just given the worst news a couple could receive and now we had to drive the hour back to his Mom's house and let his family know. We tried humor, anything that would not allow us to think. Once we started to think, we were done, and the tears seemed to fall like flood gates.

I can still remember driving up to his Mom's house, parking on the street. One of his sister's husband was outside of the house, as he and his step dad didn't get along too well. I told him to get into the house, he started to argue, concerned with what his step dad would say, I told him that his wife will need him in there, and if there is something said, I'll deal with it. That seemed to suffice. I gathered everyone in the living room, and calmly told them the news we were just told. His sisters were in tears, his Grandpa so shakey, his Step-dad huddled in a small heap by the window, his Mom... calm, without a single tear. One of the hardest things I have had to do, and yet, I know I am still facing my greatest challenges still yet ahead.

So hard to believe how much a year can change.

I immediately quit my job at Walmart. We started to travel, but then we lost one of the twins and so I was put on bedrest. Having our little girl 6 weeks premature and all the struggles with her.

This time last year, Jason was walking, was still able to use his arms, his fingers, his wrists, his elbows... he was still able to talk and be able to be understood and talk with ease to some degree. He was still very independent, still helping around the house, washing dishes, doing the laundry, still playing trains with his son, his pride and joy. He still could dress himself, bathe himself, feed himself.

Today he can do none of that. He can't use both of his hands to bring them up to his face just to push the glasses up on his nose. His hands look mangled up, and his fingers are crinkled up in a crumbled mess that he can't seem to straighten or use. His ankles are turning inward and he can no longer bear weight on his legs and feet. Hardly no one seems to understand him anymore, and at times I am struggling to understand him. I now have to use a cough assist machine to help him mimic what a cough would do, so I can use a suction machine to suck out what we normally would do with ease with a simple cough. He has lost every human decent independent capability we seem to take for granted and he has been soo gracious in each new phase, never getting angry at how his body is betraying him. Oh I wish for something that would take his mind, so he would not know how horribly his body is betraying him. To be trapped inside, knowing all that he has lost, and yet, not even be able to communicate what he is thinking or feeling. My heart breaks for him so. My heart breaks for us in soo many ways.

Sorry, just feeling a bit melancholly, thinking back on a year with a multitude of great change.

 

[Miss]

As you know, my thoughts are with you.

 

[LornaDoone]

My heart is breaking for you. Let me ask you a question. Did you feel like you lost your husband at the time of diagnosis? Do you feel like you still have your husband now? Tell me about your feelings. I want to understand what you're going through. I just can't imagine. A very well said story. Lots of love.

 

[Jason's Dream]

Thank you Miss and Lorna.

When he got his diagnosis.. my world ended. All our dreams, our hopes, our future together. We had dreamed big and many things we wanted to do in life. We wanted to plant gardens each year, fix up our house, eventually build a log cabin with a ton of acridge for our children to play and then bring thier children to play. We wanted to watch them grow up and have babies of thier own. My husband LOVES children. He wanted to play catch with his son, to walk his daughter down the aisle, to kiss away thier many booboos and be thier biggest cheerleader in thier corner for every big thing in thier lives. We wanted to travel, to take our kids and explore this world.

When we were still trying to find out what was wrong and to get answers and how to either help stop whatever it was, or even make him better, we thought about starting a business, that we could do and live on his disability and him still try to watch our kids there at our store. We were trying to figure out our new lives thinking we had hope up until the day he got his diagnosis. That day, we lost all hope, we lost the ability to fight against this disease, we lost all our dreams, our future together.

I had a crappy life before Jason. Jason is my world, and made me smile for the first time. For the first time I had purpose, I was happy. I dared to dream, we dared to dream together. Jason is my world, and losing Jason, I feel like I lose everything. I lose my lover, my best friend, my confidant, .. etc. I get mad that I dared to dream, feeling soo stupid that I ever dared to hope. Losing him, I am lost again. No purpose, only now, I have 2 kids depending on a Mom that is lost without her soulmate, with no compass, but somehow suppose to have the answers, and take care of them and provide for thier future. To comfort them, and to help them grieve, when even I don't understand any of it all.

This disease has robbed us of our relationship, any closeness. He can't put his arm around me to hug me, he can't close his lips to kiss me, I can't understand him now when I can see in his eyes how much he wants to tell me he loves me. We haven't shared a bed in soo long. I feel like we have lost our relationship, I sleep like a single woman and yet he is still here. At times, he forgets our roles and he treats me like his caregiver. At other times, when I have to wipe his butt, he looks at me pleadingly, telling me he's sorry. Sorry for something that is soo normal and what we humans do, yet it is soo degrading and humiliating for him to have to be rolled, so that I can clean him up.

It breaks my heart to see what he goes through each day, and knowing he is fully aware of what he has lost, of what is going on, is heart-wrenching to me. With Alzhiemers, at least they have no clue as to what they have lost. With ALS, he is trapped inside with no way to communicate even his frustration with it all.

I feel robbed of my time with him, I feel our children have been cheated of having to grow up never knowing how much Jason loves them so. I feel like a bad parent and feel I have failed my kids, as they will grow up without thier father.

Last year, I was trying to get ready for the beginning of life at the same time planning for the end of life at the same time. Something about that just isn't right.

I grieve over what we have lost, what I have lost, and yet he is still here. And yes, I know there is another set of grief I will experience and will be grieving when I lose him, and on top of that, I will then some how have to explain to my 3 year old where Dadda went, when I don't know or understand it myself.

I grieve for my kids and the life they face, growing up without thier father. How do I help them through that, when I still have my Dad?

I cry when I see a funeral procession and feel like hyper-ventilating as I am not ready to lose my sweetheart and I don't think I will ever be ready for that day.

In between a newborn schedule, and Jason waking up through the night, I don't sleep much. When I do, I have vivid nightmares. Nightmares of Jason dying when I am on an errand and not here to be with him when he goes, of his burial, his viewing, making the dreaded phone calls.

Sometimes 1, 2, or all 3 of them need my attention, or need something, and at times it is overwhelming and I just want to hide under my bed, or run away at times and my heart just feels like it is torn in pieces, yet I am only 1 person.

Creditors are overwhelming at this point. I have no money to pay anything. Haven't paid bills in months, my phone is constantly ringing from creditors calling, wanting money I don't have. I have several bills already going to collections. With my daughter in the NICU for a month, and Jason just having had surgery last month to put his PEG tube in, our medical bills are through the roof.

Sometimes its all a bit too much, then sometimes its just the little things that bring you back.. just a little... a familiar smile that brings me back home to him, my daughter's toothless grin, my son running up to me and squishing his arms around my leg and saying "I love you Momma".

Mostly, I am just weary of this journey. No person should have to go through what he has. If he was a horse, we would have put him out of his misery long time ago. But I inwardly struggle with wanting him to be free of this hell, and yet wanting him to be here as long as he can to spend time with our kids.

Mostly, my heart is hurting, and I am soo soo very tired.

 

[jwife]

Your post is so sad and yet so familiar. I know how you feel about this disease robbing you of your husband and your relationship. I share many of your emotions. Luckily, my husband is much older (67) and we have been able to share 43 years of marriage and 2 kids. Even having gone through so many of life's joys and hardships, it isn't any easier losing your companion this way. There are days when I feel more like a slave than a wife. I try to understand that he has to be suffering more than me, but the selfish side of me feels so cheated.
Sorry that you have to be a part of this forum, but know that you are not alone. I'm sure there are many of us who have the same emotions, fears and are stretched beyond human capacity.
I have a friend who keeps telling me to hire some help. I keep telling her that the expenses of caring for my husband have left us with no money for paying anything extra. It is hard for an outsider to know the emotional, physical and financial toll this disease takes.
Hope it helps to know that someone else knows your pain. I wish you peace and a little rest.
Janis

 

[jwife]

I re-read your post and have to tell you that you have an amazing way with words. Try to keep a journal and write all of this down. It might make a great book, a tragedy, no doubt. Most of all, it will make a great record to share with your children when they are old enough to really understand what happened to their dad.
I know, when do you have the time to write down anything? But try. It is so obvious how much you love your husband and how this disease has taken everything but his spirit. You must be an amazing couple.
Just wanted you to know that.
Janis

 

[LornaDoone]

Yah, I have to say that having to explain something like this to the kids, scares the crap outta me. I hope my husband stays symptom free for a LONG time.

oxoxoxoxox

 

[Miss]

You and Janis put it perfectly. My husband and I are in between the two of you - 49. I understand how both of you feel.

 

[catcaniac]

Hearing your story just makes me realize that You and I have so much in common. I am a bit older but my life was horrible until I met Eric 4years ago. I married my soulmate in 2008 and just knew that I was the luckiest woman in the world. Today, your thoughts seem so familiar with the degrading things I must to for my husband. No more sharing a bed as you said. Together yet so alone. But at the same time, you must understand that you are an amazing woman. I cannot even imagine how you are managing to cope with not only caregiving for your husband but also small children. On top of that, dealing with issues of the financial sort. I have neither of those. I have one grown son who lives away but I have a 18 year old who is so hopeful and supportive. Eric and I really have no financial worries to speak of but I have been where you are with the bill collector phone calls in my past. I can tell you that I went through bankruptcy along with my divorce back in 2004 and I just knew nothing could be worse. Looking back I know that it wasn't nearly as bad as I had made it out to be and both things, in the end were a relief. Hang in there and know that we feel your pain and loneliness. All we can do is say a prayer for each other and wonder why bad things happen to such good people.

Love and hugs,

Cathy

 

[10steps]

This disease is cruel and insane. I understand what you are feeling.

 

[ddelporto]

Dear Jason's Dream
My husband of 56 years was diagnoised 03/10 with Bulbar ALS and altho he is 76 and I'm 74 I feel very much of what you're feeling. We've had a wonderful full life but it's never enough....we cried and said "we thought we would grow old together"....wait, we are old but don't feel like it ....we're never ready to give up...in one year my husband went from a live, active and vibrant man to being unable to talk, walk, eat or do anything for himself...a year ago he was walking 5 miles a day and there wasn't anything he couldn't build or repair to being bedridden....it's a cruel, cruel disease...as bad as I feel, I can't begin to imagine how he feels.... I thought I was the only one feeling like a servant.....I told him that I hate the eye gaze machine because most of the time it's only giving me more orders....I'm 74 and having to lift and do 24/7.... we should be enjoying our lives at this age. Our two grown sons live some distance away and come to help every chance they get but they have jobs and families so we hate asking for any thing. I get exhausted but can't imagine what you must feel with young children at home....my prayers are with you and your sweetheart...."God help us"

 

[Ms. Pie]

I'm praying for you too.
Love,
Marta

 

[Jason's Dream]

Thank you.

Today Jason remembered that it had been a year since his diagnosis. He's been in tears alot today. Can't believe how fast time has flown and how much things have changed and how much he has lost. I was hoping he would not remember, but he has. Now to go through all those emotions a second time, crying with him.

 

[dkaste]

My heart breaks for you today. My heart breaks for me today too. My husband died a month ago tomorrow. He was diagnosed in Oct. 2010 and gone in March. His progression was fast and we traveled the same road you are on. We were fortunate that we only had ourselves to take care of as our kids are grown. He had gotten to the point of being im60mobile and needing help when wiping. He told me one day that he thought we were starting to get to the "icky" part. He ended up in the hospital with some breathing problems that turned out to be mucus aspirated in his lung. Because he couldn't get a deep breath on his own anymore it collapsed his lung. I guess he was lucky and we were lucky that he didn't have to go through anymore of the icky part. I know he wouldn't have wanted to. But I miss him. I wanted to come home today and find him here. I wanted share my day with him. I don't know.. none of it makes sense. It's just so sad. Dave had just turned 60 and I am 53.

 

[jwife]

Dkaste, so sorry to hear about your loss. His progression was very fast. In many ways that is a tragedy and in some ways when you are dealing with ALS, it can be a blessing. At he said, the icky part is truly beyond icky. Will remember you in my prayers and hope your days can bring some sunshine into your life.
Janis