Family

[karla r]

I am still waiting to know for sure, probably is all the neurologist would say, definitely motor neuron. So, my oldest son came to visit. He went with me to the neurologist. Asked if there was anything that could be done. She answered him with "no." Went on to say eat protein, don't overexert, conserve strength. Fussed a bit because the staff hadn't gotten my power chair evaluation ordered. So, I tried to talk to my sons, about how far I have slid, and that we needed to talk about the future, as it does not seem to be slowing down any. Also, tried to talk to my mom and brother. Moms response was, she can't care for me, which, I had never expected her to. My brother, we will talk about it when we find out for sure. Oldest son, we don't know for sure what it is, so we don't need to talk about it yet. Youngest son, I can't handle this, and he walked out. Are these typical type responses? Thank goodness for my best friend. She talked with me, and called me back a few days later to tell me she was too worried about me being taken care of. She handed in her 2 week notice Friday, and will be moving in in 2 to 3 weeks. She will be looking for a job in my area, so she can be here to help me. We have been friends for 36 years. I'm a widow, having lost my hubby 6 years ago to a stroke when he was 51. We, my best friend and I, are going to try to hash it all out, and write down, to make it easier to go over with my sons when they are finally ready to talk, if they ever are. Oh, they are 28, and almost 33. Is it common for family to react these ways?

 

[Gembead]

It's wonderful that you have such a caring friend, families all react differently , it's funny how the people you think will support you are sometimes the ones that pretend there is nothing wrong.
Welcome to the site, there is a lot of support and love here, as we are all travelling the same road as either patient or carer we know what you are going thru, a great place to vent.
Love Gem

 

[Green Queen]

Hello Karla.
I'm like you, with no final diagnosis at the moment...hopefully September but I'm not pining any hope on that. As you probably know, thinking you are close to a diagnosis and being told they aren't ready to give you one...the crash landing back to the unknown is very tough to overcome.
Well done for ranting about family, you have given me the courage to start a thread I've been thinking about for a while...it's very hard to be negative about the ones we love.
Gem is right...sometimes the ones we think will support are the ones who don't!
My kids are 13 and 11, and I seriously do not think I would cope without them, yet others avoid me like the plague! I'm trying not to fault them (too much!) as we all handle things differently...
Hang in there Karla (and here!).
God bless, Janelle x

 

[karla r]

I honestly think it is fear, at least for my son's. We, my husband, myself, and my sons, were always very close. Losing my hubby was very hard on them. I think they are just afraid of facing losing me sooner than they had expected to. My oldest, I think, he will come around when he has processed everything. Although, it may not happen until the diagnosis is made very definite, and can no longer be denied.

 

[Green Queen]

I agree Karla. My husband Wayne still lives in the land of 'they could be way off track...'
Yes they may be, but what will the alternative be? I have been told I'm not terminal which I'm hoping, for the sake of my family, they don't renege on...
Fear is a perfect word to use, especially as your beloved husband is no longer with you...
God bless, Janelle x

 

[karla r]

Limbo is not a great place to be, especially when it is accompanied with "probably ALS". There is the fear, and the grief, but then you feel guilty about those feelings because " well, maybe that's not it". And I am a planner. Not knowing 100%, how do you plan, without feeling like you are maybe looking down instead of up? I have so much to get in order, yet, other than Heidi (best friend), no one wants to participate.

 

[Cammarak]

Hey Karla--that's my name, too--don't see it spelled that way often! I really feel for you with the family reaction. My family, although they make all these promises, probably will respond much as your sons did( mine are 20 and 18, and my daughter is 16) when it comes down to it. My husband doesn't really get it--I'm sure that's all mostly my doing bc I always thought I was the strongest gal in the world--and he's not sure what to do now. He keeps saying, "don't do too much" but doesn't step in to pick up the slack when I let everything go for a few days! Now that I'm leaving my job of 27 years, everyone is acting like I'm frail, and I don't like it! But I absolutely adore them--and my mom and brothers and their families--and the thought of becoming a burden to them is my biggest fear now!
Oh man--meant to commiserate more with you and yet I just spewed my own garbage--sorry! I have no real advice---just that I understand your fears!

 

[Green Queen]

. >He keeps saying, "don't do too much" but doesn't step in to pick up the slack when I let everything go for a few days! ....everyone is acting like I'm frail

I don't want to hijack Karla's thread either...but WOW. It's a club and I'm afraid we are all members! That fine statement above could have easily come from MY iPad!

We need a girls trip...retail therapy!
God bless, Janelle x

 

[Cammarak]

Seriously! How often do you hear, "I'll do whatever you want--just tell me what needs to be done." Come on! We've been married for 21 years--you see me doing "what needs to be done" everyday! Do I really NEED to tell you?!?! Then I feel like a nag. Oh, well--it's a relatively small price to pay I guess. My heart goes out to the sick people with no family. At least I have a large family whom I love and I can count on when it really matters.

 

[MaxEidswick]

>I am still waiting to know for sure, probably is all the neurologist would say, definitely motor neuron

mmake sure get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!

most neuros can't spell ALS

 

[LifeEnthusiast]

All I can add is I have some friends who have been amazingly supportive and still treat me as a whole person. Other friends who only see an illness and who's eyes I see always scanning my body for changes. And my husband, he never liked to talk about it. He would just say "you used to have nice arms and legs." And when I caught him a few weeks ago having an online (since in-person) affair, he said he planned to be with this new person when I was gone and that "we aren't going to have the life that we had planned." So, yah, in my experience, the varying reactions and responses you've received are quite normal. Big hug.

 

[LifeEnthusiast]

And as a side note to above and not to hijack, I have since left said cheating husband, moved from the middle east and have returned to Ontario, Canada. I am hopimg to get a third opinion at an ALS clinic here.

And Karla, the wonderful people on this forum have been the glue that is keeping me together. Whenever I feel scared or stressed, I pop in here for a "visit". You are not alone.

 

[karla r]

The neurologist is sending me to the ALS clinic at MUSC in Charleston and to the ALS clinic in Charlotte. There was an ALS specialist closer to me, but she wanted the clinics to do the exams instead, to be sure. I thought she wanted me to go to which ever one could get me in the quickest, but she actually wanted me to go to both, for a 2nd, and 3rd opinions to be safe.

 

[karla r]

I don't consider it hijacking at all. This is what I had hoped would happen, that others would let me know I wasn't alone.

 

[karla r]

My youngest son, the 28 year old, has actually done pretty good at picking up some of the things I can no longer do, other things not so well. It is tall ng he really will not do. He is a disabled vet, with mental issues, although to be honest, I think in this case, he is using it as an excuse not to have a very difficult conversation.