changing roles

[blazonr]

I just found this site and it gives me some hope to type what I am not to good at verbalizing right now. Our changing roles are almost more to handle than the ALS. My husband has the ALS and we have only had confirmation since June although it seems that is when the slope got a whole lot slicker. We work great together, but I am a "caregiver" as most women are. When he has really bad days I feel helpless. When he is pushing himself I get upset. I usually tell him I am going to get my nurse cratchet hat. I am learning to rebalance priorities especially around the house and what "has" to get done on a daily basis. I am trying to prepare for whatever comes next.. but it seems more like bracing for the unexpected.
Thanks for listening and being there. I know I am not the only one... at the moment there are not close "real people" to do face to face with in my area.
Blaze

 

[joni51]

Sorry about your husband Blaze, hey I like that name It is tuff I know. Most people outside this forum really don't understand, but here you can be yourself, and be honest. Look forward to getting to know you!

 

[Miss]

My husband's favorite movie is "One Flew Over the Cuckoo's Nest". If it makes you feel any better, I put on the Nurse Ratched cap at least once a day now. That's exactly what he calls it when I am not letting him have his way. Usually, it is to protect him. In the early days, it was that he wanted to try things without the necessary equipment. Now, it is trying to eat foods that choke him, or he wants to skip the cough assit ~ things like that. Caregiving is the hardest job I have ever had. This disease is the hardest thing my husband has ever faced. Somehow, we are living through this ~ day by day. I cannot imagine doing this without the support of the members of this forum. They are my lifeline when things get really bad, or I need equipment/care advice.

 

[Gentleman Jim]

Blaze,

I think you articulate it very well. Your world gets turned up side down. Because ALS drives one's life, we need
to lead ALS out from driving us to us leading it. We begin to pull our lives, and not let ALS push us around.

We are not able to be all things to all people. So, walk in the timing of your comfort. I didn't say we would not
have to do things in a different order, but in order to keep your sanity, you must maintain a level of comfort
that will allow you to be balanced.

Horses, cattle and other animals are driven. Lambs are led. So, relax and do only that which you are able.
It is not your fault, or his. Knowing you both are blameless, this beast does not control you. We are all
terminal, what are we doing about that?

Blessing,

Jim

 

[blazonr]

Thank you , each of you.. We have a great ALS society in BC and I am going to start utilizing them more for myself. We have a great medical team too. It always feels good when you know you are not the only one doing or feeling what you are feeling. The funny in this though is that at one time I was the facilitator for caregivers of grandparents raising grandchildren and know full well the importance of sharing and caring what others are experiencing. Always with understanding and especially humor. In the spring of this year my husband and I attended a great 8 week seminar called "Laugh your way to a better marriage". It has helped to. After all we are husband and wife and as a good wife I give him the care he needs. Joy of the day to all who read this.

 

[notme]

Hi and welcome

It's good you're able to maintain both roles--caregiver AND wife. We'll be here whenever you need an ear or any help

take care

 

[Jason's Dream]

Blaze ~

So sorry to hear about your husband. Welcome to the forum. There are many great people and resources here. Use this as an outlet and a source of advice. As you meet each new chapter, you will have questions, and this place is a great source of knowledge and support and encouragement. ALS sucks, and there is no other way better to say it. It'll break your heart, but you will find that you are stronger then you ever thought you were, and it will make you appreciate your wedding vows and the time you have had and have with your husband.

~ Becca