Status
Not open for further replies.

Jason's Dream

Distinguished member
Joined
Sep 5, 2010
Messages
310
Country
US
State
As Usual
City
On My Own
Hey Everyone ~

My name is Becca (age 31).

My husband, Jason (age 37), was diagnosed with ALS in the beginning of May 2010. His first onset was in December 2009. We have a 2.5 year old son, William, and are expecting his sister, due December 12, 2010. This was a twin pregnancy, but we lost one of the twins early on. We also lost another baby to miscarriage in Novemeber 2009.

Jason and I were both college students. Thats how we met. We lived together for a year and got married in December 2004.

Jason's first onset was tingling and weakness in his left hand. He is left handed. At first he thought that it was just the way he slept on it, and so we tried various pillows and nothing seemed to work. In January (2010), his speech became slurred. It was almost as if he was talking like he was drunk. In February (2010), he started having the pseudo-bulbar effect on his emotions. In March (2010), he started falling. By this time we had withdrawn from classes, and I had kept working, but now couldn't keep working with him falling and trying to take care of our 2 year old. In March (2010), with no medical insurance, we set out to try and find out what was going on. In May (2010), with a thorough neurological exam and listening to his account of the progression of his symptoms, and an EMG to confirm it, he was diagnosed.

His doctors are saying he is progressing more rapidly then the average ALS patient. I can still remember word for word, the doctor telling of how all our hopes, dreams, goals, for our future were gone. "He doesn't have 20 years, not 15, 10, or even 5. At best you are looking at 6 months to 2 years tops. I'll leave you guys to process this." .. and the doctor walked out of the door. That same day, Jason wanted to tell his family all at once, all at the same time. So on top of processing this nightmare, I began to call each of his family members, one by one, to have a family meeting that same evening. I had to take charge, I had to be Jason's voice, as with his emotional responses and speech being soo bad, .. I had to tell his Mom.. his family, that he is dying.

Jason now walks with a walker or a cane. He falls alot more. He has a patient lift, hospital bed, and his motorized wheelchair is in the process of being made. He also is on a 45 day wait to get a computerized speech device that will let him select icons and communicate to us.

We have already pre-planned his funeral, done power of attorney, last will, and living will, while Jason could still communicate his wishes. He has written notes to William (via his laptop).

We have taken a couple of trips, and basically are trying to shoot the moon and let Jason do what he wants while he can. I don't care the cost, I'll worry about it after he is gone.

With this being a high-risk pregnancy, its made it difficult to care for Jason. I bathe him, dry him, dress him, shave him, wipe his butt when he poops, empty his by-the-bed toilet, give him his medicines, tuck him into bed, cut his food, feed him, hold drinks for him so he can drink (as his hands are soo shaky), translate when he is trying to talk to others, etc.

Inbetween taking care of him, of our 2 year old son, this high risk pregnancy, making sure we make it to both of our doctor's visits, and therapies, and ultrasounds, keeping our bills up to date, doing all the legal stuff, getting ready for our 2nd child and a newborn schedule to boot... I am sooo wore out!

On top of that, his family has been a pill to say the least. I have bided my time, for his sake, but I've had enough. They have not been any help, never respect me, respect us, or even Jason. His mom loves to make this disease and everything connected all about HER. She now goes to the church we attend, to gain sympathy and attention from strangers. She doesn't call first and see if he is awake (as he sleeps in and takes naps more frequently) or if today would be a good day for a visit. She shows up uninvited, and when confronted with a "please call first, for Jason's sake".. she blows up and makes it all about her. We have chosen not to make the time we have left about the disease. We don't want to become angry and bitter. We want to shoot the moon and enjoy that time. She comes over and tells me "It's soo hard to see him this way. I just can't stand to see him this way...etc". I want to scream at her, "Then don't come over. If you can't come and enjoy the time you have with your son, and make it about the time we have together, instead of the disease, then we don't want you here,... LEAVE!" She (nor the rest of his family) is helping AT ALL! His grandfather had the gall to ask Jason what he was doing with HIS grill (like after he is gone). We made that purchase TOGETHER, it is OURS, not his, and how dare he already try to claw at Jason's limited remains!

It is soo hard to even have a chance to get excited about our little girl coming in December, as between worry about her health, taking care of Jason, taking care of William, and keeping up on everything else. We are in our 30's, just starting out in life. We shouldn't be also having to prepare and deal with "end-of-life" issues.

I don't feel I have a moment's peace to myself. I feel like I have lost myself in this. That we have lost our role in a relationship and suddenly I have swapped roles from wife to caregiver of both boys. I miss our relationship. I miss Jason. At times, it feels like I am only taking care of the shell of the person he use to be, yet I know by reading and all, his mind is still in tact and all... I just miss him... I miss us. I miss the life we use to have, and all our hopes and dreams and goals. I wish someone would wake me up from this hellish nightmare and soon. I feel soo alone... sooo abandoned and overwhelmed.

Sorry to unload. Just don't know where to turn to anymore. :(

Thanks for listening to me.

~ Becca
 
Becca, I am so sorry to hear of your stuggles. Your story is all to familiar.

I want to say that you can't believe any time frame they give you, I was told a maximum of 2 years and that was more than 5 years ago now.

Your situation is a hard one being so young and also pregnant, we all have great sympathy for you! I hope you can find support here.
 
Last edited by a moderator:
Becca,

You are some kind of super-trooper!

I'm sorry for Jason's diagnosis at such a young age.

Here's hoping you can find all of the help you need!
 
Becca:
I am so very sorry for you and Jason and your kids. Believe me, you are not crying alone today. I cried with you when I read your post. You are a gifted person with so much patience and compassion for Jason. He is extremely fortunate to have you in his life during this horrible time. I know you did not expect this in your life at all! You are not alone anymore because you are now a part of this forum family. Bless your heart, Becca. You are doing great. It's OK to hate the whole thing at times. We all do. All the frustration with family and lack of understanding is not foreign to those of us here. Some are luckier than others but you just keep doing your best. That's all you can do dear heart. We're with you.
With warmest regards,
Sharon
 
Becca,

Your story sounds so similar to ours except that we are 49, and our children are 16 & 18. My heart is breaking for you, Jason and your babies. I know the struggles I have, and cannot imagine it with a 2 year old while pregnant. All I can advise is for you to reach out and take help wherever you can get it. We at the forum are always here when you need to vent, ask questions or just cry. You will all be in my prayers.
 
Becca, I can't imagine what it must be like for you. I realize his family has issues, so moving right along, has anyone from church offered yet to help? Please accept any help, and hopefully a friend will organize it according to your needs so you also have time alone with Jason and your son. I had just read your other post (Before I ask what...) and then read this thread. I hope you can curl around him and hold him and know that your life is still together, even if it's simply "holding". That really means a lot, I'm sure.

You will be supported here. And I will pray for your situation.
Ann
 
Becca, My heart goes out to you. It sounds like you are doing all that you can and with love. What more could your family ask for. I will pray that people come along side of you who can help with chores and help with the children. May God bless you mightely for all your efforts and may he grant you the rest you so desperately need also.
 
Hi Becca,

I think it is good you posted on here and outlined your situation. Many can relate. I can too. My partner is not progressing rapidly, but I have been through the pregnancy AFTER his diagnosis, and I am aware of the tiredness and the feeling of being overwhelmed. The baby will need you, so try to focus on the future, whatever it may be. This may mean taking time away from the situation, even if it is 10, 15 mins at a time, or doing something 'normal', like buying your self a lovely pregnancy garment. I hope this does not sound patronising, or to simplistic. When pregnant I tried to look after myself, but also just LIVED, believing that the stress is my worst enemy as it drains one of so much energy. We now have 8 months old son and my partner is overjoyed.

Stealing little moments with your partner regardless of the state he is in is important too, as the transgression from a lover/partner to a caregiver is not something most of us have planned, especially not at this age (I am 37). As Joel points out nobody can really give you an 'expiry date', especially as there are options with ALS such as venting, embracing technologies to communicate, all of which can lead to reclaiming back one's life.

Best wishes, Dani
 
Becca,

I too am in a similiar situation but as Miss said our kids are older, not sure which is better to have loved and not known or to have loved known and lost. My husband was 37 at diagnosis also and told 18 months to 2 years from onset. Let me tell you he is 3 1/2 years from onset, no vent, no wheelchair, peg, walker when he wants to use it and bi-pap. Try to find a happy place and try to get there when things are rough, it is a mind game and the more I refuse to play the game the better off I am I just go with the flow (screw up sometimes) and we both live life to the fullest. Try contacting your local ALS Chapter they offer respite and have alot of resources either for free or at a minium cost.

God Bless you and your family and if possible try to breathe deep let it go and the weight will be lifted. I cried, didn't sleep, didn't eat and just seemed to be there for a month after diagnosis, I let it go after praying one and the weight lift was amazing and I have never gone back to that place since then 3 years ago. Live for the here and now anyone one of us could be gone tomorrow, and the heck with the in-laws that is my biggest stresser now and have come to the determination, if you want to see your son, brother let me know where you want me to bring him but no more in my house I have enough here and don't need you telling me how to run my life or take care of your brother,son. Don't deny them access just have the family time on your terms!

Best of luck to you.

Jodi
 
Just wanted to say thank you for welcoming me here. I hate that anyone else has to suffer and struggle down this journey, but its a relief to know we aren't alone, and there is a place we can come to, to gain information and support through all this.

Is it just me (and my stupid hormonal state), or do you find you get mad (angry) at other people and thier ignorance? I have not let people know what they say makes me angry, but sometimes, I wonder if I am being too sensitive, if its the hormones in this pregnancy, or is it normal?

I over heard one lady at church commenting to another lady at church, how that it was thier 18th wedding anniversary, but in doing so, she was taking it for granted, as for thier 20th anniversary, her husband had planned on taking her to Hawaii, and so it was as if she was wishing this one away, like it didn't matter, and just wanted to get to the 20th anniversary already. Assuming that they have those 2 years and nothing happens, its like she didn't see this anniversary as special, or the time between the two anniversary as special. Just like she was wishing it would get here and over with already. I wanted to scream at her. "At least you had 18 years with your husband. We (Jason and I) probably won't see our 10th anniversary. At least you have hopes and dreams to look forward to. You assume you have 2 years to wait to take that trip. Why wait? Don't you know how time is soo precious and you don't have any guarantee of tomorrow." Ugh! It makes me soo mad at how ignorant and stupid people are!

There are times when people pull me aside and ask "how is he doing?" I want to scream at them, "Why don't you go and ask him yourself?" Not that the question I mind, but the fact that they don't seem to go and talk to him like normal. Some people seem to talk "down" to him, as if he is dumb, when his mind is in tact, its just a matter of communication that is deteriorating, but if you take the time, he can tell you how he is doing. Don't talk around him like a patient. Talk to him, as his friend, like you use to! GRRR!

People will say they are praying for you, but it seems like no one wants to roll up thier sleeves and get involved and see how they can really help you. Some people have offered to bring out a meal (which, when the baby comes, would help then), but instead of that, what about visiting with us, what about scheduling time to stay with him so I could have a day off to get out of the house and try to get ready for this baby (ie: shopping), etc?

I have soo many things to do on my platter in just a few short months, and have no clue how I am going to be juggling a 3 year old (by that time), a new born and a new born schedule, and Jason in his deteriorated state. I need to get ready for our daughter that is coming, I need to buy Christmas for Jason, William, and our daughter, I need to buy birthday for William (his birthday is 12/2), and need to plan something/buy something for our anniversary (12/18). Its soo overwhelming, and I wish I had the help, but it takes all my energy just to give Jason a bath.

I normally plan it to where I bathe Jason one day, and then I get a shower the next day. It just takes alot out of me, that I don't have alot of energy left after that. Jason gets tired after a bath, and taking both boys and my worn out self out shopping is quite the under-taking anymore. :(

Sorry for unloading, but I just don't know what to do anymore. People look to me for answers, and truth be told.. I don't have any. I am winging my way through this as well, and feel soo completely alone. I remember when I was overwhelmed in days gone by, I could curl up in Jason's arms and he'd tell me it'll be alright and help me work through it and solve it. But thats not the case now, and I am placed in a different roll, to where I seem to have to be making all the decisions and solving the problems, and gaining solutions for us.... and I'm soo tired and wish I could just curl up on someone else and give them the reigns and have them make the decisions and all for a while, but no one seems to be there to talk, much less help. :(

Thanks again for listening. I really appreciate being able to talk to others that aren't patronizing, that actually do get it, that know what we are dealing with and what we are facing.

Some big questions I have that I don't have answers to... how do I explain to a toddler the concept of death, of how Dadda is dying... how do I tell him when Jason dies, that Dadda is gone and not coming back? I know our daughter will not remember, but William might. How do I help him grieve? Breaks my heart just even thinking of the future before us. :(

Thanks again for listening.

~ Becca
 
Becca, I am sorry for Jason's diagnois and my heart breaks to hear how unsupportive your family is being. No one deserves this disease and no one certainly deserves to be abandoned in their time of need. Families are funny and unfortunately we do not get to pick them. I would tell you that the last thing you and Jason need is to be surronded by negative people. It's your home and your lives you should feel free to set your own ground rules. Also support sometimes can come from other places. It sounds as though you are active at your church perhaps you could find some support there. Never the less feel assurred that anytime you need to vent or share or ask question we are all here for you. Your statement about not taking life and future wedding anniversaries for granted is so true. There is no promise of tomorrow, we are all mortal and need to appreciate today and the people that matter most to us. It is a shame that it sometimes takes adversity to put life into it's proper perspective. I think it is great that you are being so supportive of Jason and that you are "shooting the moon" together. Continue to cherish everyday and each other and do not allow others to bring you down, it's not worth it. You are obviously a very strong lady and Jason is lucky to have you.
Keep the faith, I will be praying for you! - Ted
 
Hi Becca,

I am not really sure what to say, but after reading your post, you are an incredible woman.
Sounds like there is a lot of love in your house! How you spend your days, shows that.
In laws eh! My father in law was diagnosed late 2008, which happened to be 2 weeks after my mum died and 1 week before our wedding - so we had a lot on, however, my father in law Joe has a great personality and once you get your head around the fact that time is precious, I arranged more family get together's and family lunches at the weekends which I know is appreciated by Joe, as he loves being around all of his family - he has 10 children! - it's just a shame some people/family see the illness/caring like a burden and how hard it is for them - don't you just want to shake them and say 'it's not about you!' I try and keep the fun in my father in laws life, he's a happy soul ;o).
Reading your post has definitely made me think, even on my tired days - our time with the people we love shouldn't be taken for granted and to make the most of every day.
I send my best wishes to you and your family and your bump! ;o)
Take care,
Sue
xxxx
 
Becca, God bless you, you really are under too much for one person to handle. When an old friend asks how Jason is, or offers to bring a meal, please tell them that you need help. Accept the meals now, and let your friends learn by coming over what it's really like. I found that people did sometimes not know what to say to me when I was first diagnosed. For one thing, it's out of their experience (for the majority of people) but also, they have no clue about what ALS is, and how it affects us. They tend to think it's a "muscle" disorder, and don't know beans about it. So... I'd start teaching them. A little at a time, when you have time... at church or in your home. You'll have to explain more than once to most of them, because they will not be able to wrap their heads around it. But some will keep trying, will look it up on the internet, for instance, and gradually, I think you'll be offered help that means something.

Regarding friends of Jason's who "talk to you rather than to him", the friends who were really close need to be told how they can understand him... because they are probably your best bet for getting "sitters" so that you can get out and do your errands. He, hopefully, wants to see and visit with them? Is he ok with being left without you there to carry the conversation? If so, tell his friends that he is still Jason, and introduce them to his needs. It takes time. I realize you're justifiably frustrated, but I hope you will be able to find a way to connect to those special people who will really want to help. They exist...start by believing that. I think it will prove true.

Sending a hug...
Ann
 
Becca,

I know how overwhelmed you feel, after my moms diagnosis I felt that way also. Then I found this forum and the people here were so helpful and comforting to me, I knew they understood how I was feeling. Having negative people around you does not help you or your husband and they should be told if they can't be positive around you and you family then don't bother to come and visit. My mom has been so lucky when people come to see her they joke around with her and lift her spirits and you can see that helps her. Whenever you need to vent just feel free to do it, you need to get rid of that and concentrate on your family and enjoying your time together. Don't feel like you need to apologize for unloading on us, we have all done it and totally understand.

Dana
 
Becca:
So glad you have accepted us to offer you our support and suggestions as best we can. I agree with the others that you are an incredible person do have done what you have done already! Please call the pastor of your church and tell her/he that you would love some help. YES you do need time away, not only to get things done but to join the rest of the world for a reality check that life is still going on around you and to breathe deeply, rest and walk slowly. Also, you have a huge mess of things on your mind to get done. I've found that LISTS help a whole lot. Make just one list for one outing with just a couple things on it. Make your next list when you know you will go out again. It is amazing how much smaller the tasks become when written down on paper. Or maybe start with the list of things and decide which ones to do first........the rest can wait for the next time. It's easier than it sounds when you narrow it down instead of just one big pile of responsibilities. I hope you try it.
Next bit of advise, you may or may not want but I'm 68 years old and have had kids and now a husband with ALS and a life full of experience. The best way to avoid disappointment with people is to change your expectations of them. Most folks mean well but don't have a clue how to do what they mean. Does that make sense? Let things roll off your back as best you can and wish those people well. They simply don't get it, but you do! Hug your little William and rub your tummy because you're one of the world's best mommies, even if your exhausted and overwhelmed.
Hang in there little lady. You just need to take care of today and let tomorrow take care of itself.
Sharon
 
Status
Not open for further replies.
Back
Top