How do you deal with the feeling that you are a burden?

[DesertWoman]

Hi friends,

I am so grateful I found this forum.

Even though I haven't been diagnosed yet, after my throat realization (meaning that it is one more symptom that comes and goes but is so present right now and feels like a mucous ball) I am starting to think ahead as if I do have ALS.

My number one concern is my sons. They are 20 and 16 and live with me.

I'm concerned that they will see me suffering and that it will hurt them. How do you cope with knowing that the people that love you are worried and how do you not feel like a burden to them?

Can you tell I have lived my life worrying about not being a burden?

Karen

 

[Al]

Teen age kids and young adults are pretty smart these days. I am sure your kids love you and won't feel like you are a burden to them. It won't be easy for them but keep them in the loop and let them know what is going on. I'd maybe hold off telling them you might have ALS untill you get a diagnosis. If you haven't already told them I'd just prepare them by saying you are being tested for a very serious illness and you are hopeful that the news won't be bad.I'm sure they already might think something is wrong. Try not to worry.

 

[Barbie4]

burden

Hello
I am glad I found this forum too.
My friend apologizes to me for crying or she'll say she is ruining my weekend or something like that. I assure her that I am exactly where I want to be and that I wouldn't be anywhere else. I hope she believes me, because it is true. I love her and will never think she is a burden because of that. I sometimes think she thinks I am a bug for always trying to be there and do stuff for her. .

Hopefully, your diagnosis will not be ALS and something easily treated.

Barb

 

[bodyheatq]

Can I ask you something? Would you want them to tell you how they feel? I'm 19 and my father has ALS and I can't bring myself to tell him how I feel.

 

[Ronelle]

I know the feeling that you have about hurting your children. Mine is 16 and 19 and I JUST COULD NOT tell them the truth when I was diagnosed. It hurt so much it was impossible. My son was 3 months away from his final exams and we told them that I had a severe disease that is unpredictable. We told them that I am loosing my abilities and that we would handle problems as they arise. A year later my son knows the truth but CANNOT or WILL NOT talk about it. It is difficult for me because I need to know that they are prepared for the worst. I still CANNOT tell my daughter. I know she will be devastated. I try to hide my struggle from them but it is getting more difficult by the day. I wish I could spare them seeing me suffer.

 

[rachelg]

Hi Karen

My husband was recently diagnosed with MND - Progressive Bulbar Palsy.

Mark has 4 children aged 28, 24, 19 & 17. His decision was to tell them exactly what was going on the whole way through.

The Kids are remarkable. Though devestated at first all they want now is to be there for him and offer support in any way they can. We worried most about Alex and Jess (19 & 17 year olds) but they have astounded us with their reactions. They have both decided to deal with their dad's disease exactly as they see it. When dad is happy, they are happy. When their dad is down they try their hardest to cheer him up and are very supportive.

Children have an amazing way of adjusting their ability to cope with their "new normal".

I hope that your diagnosis is not one of ALS but whatever it is this forum is fabulous and definitely a place to come for hope and inspiration.

Rachel

 

[Al]

Hi guys. Karen posted that message in 2006 and never posted after that year.

AL.

 

[RLHUNTER]

Hi there, I am new to the site (just today). My husband was diagnosed with MND about 3 weeks ago. Most likely at our next Drs. visit, he will be diagnosed with ALS. His symptons have been getting worse and he is weaker every day. I know for myself and our 12 yr. old dau, we have been informed of everything every step of the way. This week I broke down and just sobbed. My wonderful daughter was comforting me, the adult, instead of me comforting her. What she said is most likely what your sons would say if they knew what was going on. She said "We'll get through this, no matter what. We are a family and we will always be there for each other no matter what. God won't let us deal with more than we can handle." My prayers are with you and your family.