[dgary705]

I am a caregiver for my loving husband who has ALS. I am a very determined advocate for him and all his needs, but I am having difficulty doing other things. My daughters keep telling me this is all I talk about and miss regular conversations. I have been blind to this. Please help me see how I can change this.

[♥ paleshia]

oh my, with a diagnosis so new, i am sure this is what is on your mind all the time! you don't need to change this but maybe an outing with your daughters to a movie would be nice...no conversation needed.

welcome to our group, people here "get it"

[♥ irismarie]

Dear friend,
not so long ago I started a thread with the title "obsession" as what you say is true. It becomes the focus of your life. There is so MUCH to think about, so much to organise, apart from the sadness you have to cope with.
YOu have already started the change in being made aware by your daughters and by caring enough to want to be at your best for them as well as primary carer for your husband.
Everyone, but everyone, here will tell you how hard that is, so do not beat yourself up about it. I think a lot of us cannot even sleep as it continues to try to take over our minds 24/24
I do not know how old your daughters are, but old enough to miss your previous conversations so old enough to understand.
I thnk it is a bit like the rest of life - you have to be ready to take as well as to give, so take some good times with your daughters. Your husband is a loving man and he will want you to do that, too. ALSO, it might be lighter for HIM to talk about and hear other stuff, too.
Good luck in your new intentions. Be lighter with them and do all the heavy stuff here among friends who really really understand
Love
irismarie

[DebbieR]

dgary
I can so relate to what you are saying. This disease is all consumming. What a good idea to go out to a movie with your daughters - might take your mind off of ALS for two hours as well as give you something to look forward to. Take care of yourself.

[♥ handinhand]

Hi, I am very sorry that you are going through all the emotions that go along with this awful desease.. I think in the beginning that is pretty much what was on my mind also. It still is there all the time ,just a little futher back... Never gone completely. My dear husband is my main caregiver but my friends and children are support for me also. I love the idea about the movies with your daughter. Anything that will distract you for a while. My husband is retired but works at a fun cowboy store in our little town. He wondered if he should quit? I said no way and you work as much as you want. I keep busy also. knitting having lunch[soup] with my friends and trying to do all the things i normally do. i know the time will come that he will be home more. Hope much later? Try to do things at home that will also distract you if you can't leave him alone.. Find something that you like to do. Mine is knitting. Take care and please come here ofter. I do every day... Hugs, Linda

[♥ brooksea]

Hey d! Sorry about your husband. In the beginning it is such a shock that it is difficult to think about anything else. Then eventually you learn to take one day at a time. Lay off the ALS conversations with the daughters, as was suggested and make yourself interested in what your daughters are doing. We are here for you!

[♥ halfin]

Of course it is natural for us to have ALS on our minds all the time. At the same time we need to be able to step back and listen to other people in conversation, learn about their lives. My wife tends to talk a lot about ALS and what is happening, when we meet people. Hal fell the other day, Hal is having trouble with this, he is using his wheelchair more, etc. I try to change the conversation and ask about them. Everyone has things going on in their life.

Now ALS makes our lives more newsworthy than most because it is progressing and there are always changes. But it is like having a new baby. You want to tell everyone everything. Little Petunia sat up yesterday. Petunia thew her oatmeal and made a mess. After a while people get the message. New parents are always that way, their baby is everything to them. And similarly ALS is everything to us. But not to everyone else. People want to know how things are going but once they get the picture, it is time to talk about other things. That is how I try to do it.

[dgary705]

Thank you everyone for all the great advice. It helps to hear from others who are dealing with the same thing. I am going to take your advice and try really hard to think before I speak from now on.

I am willing to accept any good advice to do with ALS.

Thanks again

[♥ Blubear]

Once we got the game plan for now in place, I try really hard to not talk about it. If my mom or dad wants to talk about it, I will listen. I do gentle nudges as to what they will need in the future, but they wont listen, so I shut up for a few weeks (and then another gentle nudge here and there) and talk about other things that are all happy and positive. NOTHING STRESSFUL UNLESS ABSOLUTELY NECESSARY! From my end I give them sunshine and puppy dog tails to lift their spirits as much as I can. It is HARD not to talk about it, but we are trying to get on with as much of a normal life as possible until the next thing happens. (well, I would rather they would be prepared more for the future, but they again wont listen) Try to prepare for the future, deal with the present, and live for today and try and not let the disease take over your lives. It will do that on its own later on.
Hugs, Kari

[♥ indigosd]

It is always such a shock and soul overwhelming. I think that you will have to "talk" about it to people that are willing and able to listen. Like us on the forum. We "get IT"- I think for me in the beginning it was like Post Traumatic Stress Syndrome-it was ALL I COULD THINK ABOUT. You can not subdue it, you can not ignore it, you can not deny it...you just have to talk about it and share it. The intensity does become less as time passes. We will listen and support you. hugs, Kay Marie