Mixed emotions

[jmnn78]

Hi there. Some of you may know Sprawl. He is my husband and was diagnosed with ALS in January. I have so many emotions varying from day to day. Part of me just hopes that this diagnosis was a mistake. Like this can't be happening right now. I also get angry because this is my best friend. He is the only one that gets me and we make such a wonderful team with our life goals, raising the kids and such. We have been married for just about 16 years. The years have flown by just so fast.
I worry about what this disease will do to him. He is a very busy guy and always gives 110% in what he does. I also worry about our kids (they are 7 and 8). They both think that their dad is the greatest person in the whole world. Will I be strong enough for them? Sorry I seem to jump around a lot but it feels like my mind is racing all the time. I just want to throw a fit like a 3-year-old yelling about how unfair this is. I don't want to lose him. I don't want to see him suffer. It gets a little easier some days and we are able to joke about it. The hardest thing is that it's hard to talk about the future. When the kids graduate high school, get their driver's license and things like that. I am just having troubles dealing with this. I don't want to be struggling so hard. I don't want to make him feel worse about the diagnosis. I just feel so lost right now.

 

[Vincent]

Sorry to meet you here. It may sound overly simple or even trite but focus on today. We who are diagnosed have a pretty good idea of what's coming up and it aint pretty. All you can do is get up and ask; what is ALS effecting today? And plan your day accordingly. I'm 1 1/2 years and I still can walk, my upper body is fine. Breathing is an issue but I work around it. You have a pretty good idea of what's next, but you can't be sure. It could be a longer journey than you think.....
Vincent

 

[Atsugi]

JMNN78, I think a lot of us can relate to the confusion, frustration, and anger you must be feeling. It. is. just. not. fair.

What is his condition now? Last I heard (January) he couldn't use his hands. Can he still speak? Eat?

How are the children processing all this? When my wife lived and died with ALS, it was a very rapid progression, less than one year total. That year saw my kids grades go down and a tiny bit of trouble from my girl. But they recovered quickly. Kids are really resilient.

 

[pittsburghgal]

I can completely understand your thoughts and feelings. I, too, have felt so lost. My husband was diagnosed in Nov. 2011 and actually had symptoms that began 6 years before that and progressed very slowly. Like Vincent said, it could be a longer journey than you think. I use to be annoyed at people who said to me "take one day at a time" because I am the type of person who needs to have everything planned out for the future. You just can't do that with this disease. You really have to take each day as it comes and try to get the most that you can out of it.

I find the "mind racing" that you describe happens to me at night and makes it very difficult to sleep. After suffering with this for years and increasing depression that started last Oct., I finally asked my doctor for some medication for the depression and anxiety. I take a very low dose but this has helped me a great deal. There is tremendous support and information on this forum. Come here whenever you feel lost and say whatever you need to say. I found this helps as well. I felt so alone and just realizing that others here knew what I was going through was like therapy for me.

Sharon

 

[jmnn78]

He has lost most of his function in just the right hand and the muscle atrophy in the right upper arm. His legs are feeling a little weak and awkward. Breathing and swallowing are great. Right now we have been busy with appointments and getting his care team in place. We have been filling out tons of paperwork. We got in touch the PVA rep right away and he has been awesome in getting information and what our benefits are. He already is getting 100% disability benefits.
As for the kids, we haven't told them much. We told them that daddy has a disease that will cause him to lose function of his arms and legs. We did not tell them that he will pass away. I took the advise of the doctor and had a conference with the teachers and school counselor and told them to let me know right away if they see any changes in attitude or if they seem to struggle. They were great about it.
About 2 weeks after diagnosis he was laid off from his job. He will get to receive disability. So he has been at home. I am not sure if this was a good idea. He is very bored and seems a little down from time to time. His old co-workers are wonderful and goes to lunch with them often.
We will be busy this spring and summer because we got our seeds on order and will begin planting very soon. That will occupy most of his time.
We are just taking one day at a time. I am going to start college in the fall for nursing. I REFUSE to let him go into a nursing home once the disease progresses. I do have a wonderful support system. I will do everything it takes to keep him home.
So we piddle along filling out paperwork everyday and discuss things that will happen. I am just hoping that we can be there for each other and for the kids.

 

[Atsugi]

JMNN, I read every word and it seems to me that you are doing absolutely everything perfectly right.

 

[affected]

Sorry to be welcoming you here JMNN78. I hope you keep talking here so we can all support each other

 

[lgelb]

J,
Whether you study nursing or not, there is no reason with your diligence and devotion that your husband should have to enter a nursing home. You can't keep him from dying, nor wishing for the fully-physically-capable life that he has left behind, but you can (as can all CALS) keep him from truly suffering, and for many of us, that was/is goal #1.

Best,
Laurie

 

[poppies]

Hi J, your words are an echo of my thoughts and feelings during the early months of my husband's diagnosis. There is just no making sense of it all. But as Mike says, it sounds like you are doing everything right. Plan ahead as much as you can but try not to overthink the future, it will be here soon enough and you will deal with each step as it comes. Keeping him at home is definitely manageable even without nursing school. With the amazing help and advice here on the forum and internet research you will be able to find answers for even the trickiest questions that come up. I cared for my husband right up to the very end and I consider it my privilege that I was able to do so. My only advice would be to get help sooner rather than later, as this will help you help him and prevent you from burning out. My thoughts will be with you as you travel this journey together. Sending you hugs and strength.