My Husband has ALS

[kfrancis]

Thank you all for your feedback. Times have been hard I am angry alot. I try to see life from his point of view but it's so hard. I am trying to find a support group in my area that meets more than once a month. I am thinking this forum may help in supporting me a bit but Ive never joined a forum so it's new to me. I think my husband is getting weaker he can no longer help care for our son who will be turning 2 on Oct. 9th, we have to have people come in at night to put him to bed on the nights I work. I've also learned you really find out who is there for you and who's not. What a shocker to me, people I never thought would be there for me are and people I thought would be there for me are not. Crazy world it is. I keep wondering how I will make it without him in my life but I can't think of that right now everyone says one day at a time but that's easier said than done.

 

[amber and bruce]

I am right there with you. I am 30 and my husband is 32. He was diagnosed in August of this year. He can no longer help with our 2 year old and has trouble doing so much for himself already. Our 5 year old is pretty self sufficient and even helps dad out. I also work nights and have had to get help with the baby at night. You are so right about finding out who's there and who's not. I have trouble letting people help that is not a part of my day to day life though. I don't want to burden someone with my kids no matter how much they offer unless I really have to-they can be a hand full; plus my kids aren't used to staing with other people. I know that I am going to have to give in and accept help from people that I don't even know (probably) its just sooooo hard.
Yes, one day at a time is easier said than done. Bruce is very spastic and that is part of why he is still able to do some things butthtey are fixing to put in a boclofen pump to decrease the spasticity and then he may loose the ability to do the things that he can currently do. I find it hard to not expect him to help some since he is still ablt to get about (very unsteadily) and somewhat use his hands, I can't do it all by myself. With this pump he will feel better but I may have not be able to help at all. That sounds selfish when it comes out but how am I supposed to take care of 2 kids-1 with homework, a disabled husband, clean the house, do the laundry, do the household shopping, and work enough to pay the bills. The bills keeping increasing too. Since he can't care for the baby I have to pay $99 per week for daycare, we are having to do some modifications to the house, there are the costs of going out of town to the doctors and medicines. I had a little bit of a melt down-which is highly unusual for me, I am a nurse and taught to deal with medical from the approach of "how do we fix it or make it better"-after we found out aboutthte pump and we are also getting our peg and wheelchair. I just waited until I wan't around him so he didn't know about it. I am the strong one. I am the one that has to hold this all together. We will get through it no matter how hard, there are little ones that need us.
Sorry to ramble on about my story, it probably didn't make you feel any better.

 

[Al]

Amber the important thing is, did it make you feel better? That's what we're here for.

AL.

 

[Pat Paine]

Amber and Kfrancis,
Welcome here, ditto what Al said.
Blessings to you.
Pat

 

[taminator]

You'll have a great "extended" family here. Lots of emotional support, great ideas for getting help, caring for your loved one, etc. Thoughts are with you both.

 

[amber and bruce]

Thanks everyone! It does make me feel better to be able to come here and read things that others write and say things that others understand. I have great co-workers that do not understand but they are very supportive of me and help me in any way possible.

 

[Miss]

Amber, you are in my thoughts constantly. You and Bruce are in my prayers daily. I get overwhelmed, and my children are 18 and 16. I cannot imagine how you do it. You must be one incredible, strong woman.

 

[pops66now]

Hello Amber and Kfrancis, I have a shoulder and nothing but time on my hands so
ramble on. I can not possible imagine what you two are going thru. I'm sorry you
have to go thru it.
GOD Bless Wayne

 

[Phil M]

We are here for you all...

 

[brooksea]

Sorry, y'all! I can't even imagine what you must be going through! We have a 10 year old and that's tough enough. Y'all have much more physical care giving going on. Good luck!

 

[momszoo]

kfancis I can definitely relate! My own brother rarely comes around....he doesn't even call to see how my dad is doing. It's very frustrating and you do find out who is there for you and who isn't. I understand everyone has a different way of coping but if he would just come to visit and be a relief for those caring for my dad 24/7 that would be wonderful. Not to mention I know it would lift my dads spirits.

 

[crossjohn98]

What is ALS? I am sorry for that.

 

[cris]

Girls...you have come to the right place! We are all here in love and support. Most people just don't GET it. You have to live it see it everyday to understand. We also had issues with the kids and someone to take care of Earl. We found that having 2 or 3 people come in on a rotational schedule didn't put too much pressure on anyone person. I too work nights. We finally had my brother move in with us to help Earl and watch the kids while I worked. Check with your church for help in all ways..even the home re-modling. As a friend once told me, when I was having trouble accepting others help, Don't take away their blessing...let them help. Oh for the people that stayed...we put a day bed in our living room with Earl the kids used it lik4e a couch during the day and no bed had to be made at night was much easier.

God Blescris