no words

[Atlas]

I have no questions, no expectations.

My wife has ALS. Diagnosed at christmas. Her hands, speach and now general stability are affected. We have a 3 & 5 year old. Just recently started my own business.

Don't know what to say/ask. Have some support from family but limited. Surviving for now but not much emotional resiliance.

Folks say i need to look after myself but not sure what that looks like. I have 3 people to care for, can't really bugger off to fiji. Have started rock climbing with friends. Have meaningful conversations. I need to be with my family. Having difficulties dealing with some family carers who mean well but take more time than they save.

Not sure if i need help, if i can be helped. It's all bloody hard work but can't see an answer.

Never give up!

 

[Atsugi]

I think I understand what you mean. It is very hard work. Faced with losing my wife, my only friend, the perfect mother for our two tweens, I lived each moment without expectations--so I was never disappointed. I just kept going moment by moment, living hour by hour.

 

[affected]

Sorry to welcome you Atlas, I'm an aussie too.

 

[lgelb]

Atlas,
I'm sorry that you find yourself here. Your username is well-chosen. It is a requirement for the CALS position. I could never (even now) deal with the "how are you doing with this" type of inquiry. But rock climbing and being with your family both sound pretty good.

Poke your head up any time with questions, and we'll support you whenever you've the need.

Best,
Laurie

 

[Nuts]

Atlas, welcome to our little family. Sometimes, just introducing yourself and expressing what you feel to someone(s) who understand helps. As Laurie says, speak up anytime, even if it's just to vent. The questions will come, and we will be here. Sometimes reading through threads will answer questions before you know to ask them--I found it both helpful and awful in the early days.

Emotional resilience--there's a precious commodity. As for those who consume more than they give--tell them point blank what you need. I hate to say cut them lose, because perhaps they will step up once they come to grips with the reality that only you see day to day.

I wish I had more. My heart breaks for you.

Welcome

Becky

 

[Buckhorn]

Atlas, sorry to welcome you here, but share whatever you feel comfortable with and ask whatever you would like. There are very helpful and well informed people here on this forum. I am so sorry for your situation of having two little ones at home and your wife's recent diagnosis. My husband was diagnosed about 3 weeks before Christmas......

 

[Green Queen]

Atlas you have found a very supportive family here

 

[vzandt]

Read ...read...read. This site has so much information . And your very new into this. Give yourself some time. You haven't even had a chance to process this yet. And the people on here understand everything your going through. They won't judge. They will help more than you can imagine. Just having someone who really understands is a godsend. Welcome.

 

[Tracy500]

Hello, I also have a 3,5,10 year old children. Plus my husband has been diagnosed almost 2 years. I had to quit my job almost a year ago b/c he needed full time care. It's hard, and he is a mean PaLs so it's even more difficult.,if you can hire help, get it. I can't find anyone for me but wish I could. We are now in advanced stage. I'm sorry about your wife, mother of those babies, and try to spend a lot of time with her and have kids involved too.

 

[alligator]

Hello,

When my wife was first diagnosed, my two boys were the exact same age as you two kids. Right now, I can understand your complete confusion. My wife and I were in shock and we both wondered how we were going to deal with raising two young kids and manage this dreadful disease. Although I'm an American, I am familiar with your Medicare system. My first question to you is, do you have private insurance in addition to Medicare?

You likely are required or suffer a penalty if you are not carrying private insurance if you are over thirty years of age. I strongly advise you not to become her primary care provider. A very wise nurse told me "you can't be her husband and her nurse." I can explain the reasons why in a private message. I can also share with you how we prepared the children for the changes that are going to occur with their mum. Let me just warn you--life as you know it is going to change dramatically. You have to start preparing yourself mentally for the upcoming changes. I have specific advice as to how to help your children and preserve your sanity. There were many things I did right but I also made more than a few mistakes. Would be willing to share any advice.

Alligator

 

[affected]

@Tracy that is beyond hard. I only had my husband to care for which was hard

@Alligator I'd love to see you start a thread and explain how you helped your children, that would be an awesome resource here!

 

[Atlas]

Thanks everyone for your kind words.

it sounds strange but I was quite intimidated by the idea of even coming back to this page to see who'd responded.

I'll do my best to come back more regularly.

Alligator, we do have private insurance but it's still very expensive to get anything done through the private system.

We're in the process of getting some additional care (paid for by care associations or the government) put in place but it's hard to know what we want for where we're at. Half the time anyone assisting means between the disruption of working around other people and how long it takes to organise it ends up just being more stress. The other half of the time it is awesome though. Not sure how I'd survive without the helpful helpers right now.

I started a landscape gardening business only just before we found out she was sick. While she's not fully dependant I'm currently doing a third of the hours on the business I should, between paperwork around our changing situation, additional parental responsibilities, general stress and trauma.

Family comes first of course but we also need an income. Split priorities is an understatement.

Thanks for listening.

 

[Atsugi]

This thread reminded me: It sounds cruel to say, but only one person will survive this journey and need to carry on raising the family and paying the bills. So don't forget yourself.

 

[SanNicolas]

Sorry to hear about your wife. I don´t have a lot to contribute, but I can relate of having a (relatively) young wife affected by this disease.

 

[affected]

Atlas mate, keep talking ...