my daughter thinks I have advanced ALS

[stumble]

My daughter feels I am into advanced ALS. I'm still practicing with my bipap, and since my wheelchair won't fit into the bathroom I still use my walker to get there. I went to buffet and ate soup and scrambled eggs and orange juice and this weekend I am attending my nephews wedding next weekend. I fed and petted animals at a petting zoo last weekend.

True I have bulbar onset but when I don't look so good she thinks I am in death's doorway.

She is getting me a babysitter this Friday.

The one thing that will lead me to death is everybody thinking I am one step there

Sandy

 

[skipper66]

Sorry if it feels like she is babying you Sandy. But, as a daughter I can only say it's because we love you. My dad unfortunately lives far away from me now and if I hear any little cough or anything over the phone it puts me into a sheer panic. It drives him nuts too. Just try to reassure her that you feel you are doing fairly well. But, also be fair with her and let her know when you are having a extra rough day. Then she will have more reassurance that you will come to her and she will relax more. You sound just like my dad. He wants to take care of me and not the other way around. What are we going to do with parents like you? lol

 

[dalvin]

Hey Sandy,try to think of it this way. Instead of a baby sitter, you're getting company everyday. Someone to chat with and be spending your day looking at the same four walls, watching the same old boring tv shows, etc. now when you feel frustrated you've got somebody to gripe at, when feeling up, you can laugh and joke. It's all in the way we chose to look at it. Come to think of it, I could use one of those

 

[skipper66]

Sandy,
Is the babysitter a male or female? lol I would babysit Dalvin but he lives too far away.

 

[pearshoot]

WHAT IS Advanced ALS....does she think its fast progression....how do you feel, that's whats important....PEACE

 

[affected]

I would babysit Dalvin too, he lives in the wrong place obviously!

Stumble, seriously though, is there some way you can get your daughter, and yourself and a third party health professional of some kind to sit down and talk about this.

Let her say where she feels it is all at and what she feels you need. You say where you feel you are at and what you feel you need. Have a health professional (maybe a doctor or OT would be great) say what they feel are the current issues and short term upcoming needs?

Then maybe you can all make some agreements on what will help your daughter feel at ease, and give you the control too.

I reached a point of disagreement on some care/safety issues with Chris at one point. So I called a 'family' meeting - him, me and his 3 children. I liked that with an odd number, we were going to have to get majority votes. If it was just him and me disagreeing, well someone was going to have to trump the other if you know what I mean.

It was so interesting because he said clearly his view on certain things, his children saw it all slightly differently to each other. We did make some agreements with everyone giving a little. At first he was skeptical that I was calling the meeting to 'get everyone on my side', but it quickly was obvious that this was not the case. I felt so much better because it was very open about what he wanted and how he felt, as well as he heard what the people who loved him most felt.

I can tell you that it is always very different for the one watching and worrying, so open discussions can really be helpful to both of you. CALS and family want to protect, I think that's natural, but we have to also realise that we can't just take control of how things will be. One of the hardest things I had to learn when caring for Chris was to allow him to make decisions, even if I didn't agree with them, and then support him in those decisions.

 

[Barbie]

Stumble--I know that my husband uses to cough and choke and I would freak out until he told me that my facial expressions were scaring him half to death. I did not realize that my panic was showing on my face and upsetting him. so now that I know I remain calm at least on the outside because I want to him to be calm. she is probably scared too, and loves you and doesn t want to lose you. You don't sound that far gone to me either, but you might want her to read our responses here so she understands how her reactions affect you.

as far as the "babysitter"--I try not to use that term because it is degrading to my husband but sometimes it slips out because I am a momma! Having someone there is not so bad and helps her relax and gives you company. Or, you could have them clean your house! my husband always says "just make sure she is a hottie!" LOL. try telling that to your daughter and see the reaction you get!