I bring everyone down....

[JenD1214]

It sucks because my mom has had ALS for over 5 years. When she was first diagnosed my family and friends were always there and always willing to listen to me when I was upset. As the years went by, my mom hit a stable point, where she hasn't gotten any worse. I am happy for the fact that my mom has not gotten any worse. However, my mom is not going to get any better, and she never will. In fact the doctors tell us, that even if there ever were a cure to be found, it would stop the disease, but not bring back what my mom has already lost. My mom can no longer walk or talk. What has made me sad though, is that SOME (not all) of my family and friends have begun to tell me I need to stop talking about it, they tell me I need to stop bringing up my moms illness and bringing people down and making them feel sad about it. This hurts me because I feel like they forget, that just because this disease is not progressing right now, doesn't mena it still doens't hurt my mom, and me. I can't even go shopping with my mom. I can't take my mom anywhere by myself because I can't lift her if she needs to go to the bathroom. These things stil hurt me so much inside, and I feel like no one ever wants to hear about it anymore. So I keep it inside, but I wish that people would not get so frustrated when someone is hurting. I try to be strong almost 90 % of the time and none of them give me credit for that. They only remind me of the few times I have cried when they wanted to have fun and not talk about my mom at the time. It's a shame to me, that people always say they will be there for you no matter what, but SOME of them only want to be there when its convienent for them. In the meantime, I am so grateful for the people who are really there no matter what. I am wondering from of all of you, some ideas on how I can cope with my pain, even though I'm happy my mom is still here. I don't want to be known as the person who brings everyone down anymore. Please help.

 

[ottawa girl]

JenD,

Great news that your Mom is beatings the odds! You're both lucky.

I know you feel you're bringing people down- but you're also keeping someone up- your Mom. That requires great energy & sacrifice.

I don't know your age, but if you're in your 20's-or early 30's it is very common for friendships to drift as people settle down, move, marry, etc. So, if your circle is dwindling, it would have anyway, and not due to you. (these friendships often re-kindle later).

One thing for sure, you do need an outlet for your emotions- gosh you've been grieving for 5 years- losing your Mom bit by bit. Don't be so hard on yourself! Find a support group or better still a trained counselor to help get you over this hump. They will teach you coping skills and you will have a safe place in which to dump the negatives. That's maybe all you need. And joy will return to your life and relationships.

I do know what you're saying though- I try hard everyday with friends to avoid the topic of ALS, unless I'm asked directly. It's my way of not letting ALS define me. Don't let it define you- you are so much more!

You are a great daughter and a lovely, caring, insightful and sensitive person. Your true & strong friends will survive a few tears once in awhile and hug you along the way.

 

[Katie C]

SO about those friends that tell you not to talk about your mom... they aren't friends, they're acquaintances. Cut them loose. They don't want to listen? Fine, you don't need to waste your time. Focus on the friends that listen and care. Try to find a good counsellor. Do what you need to do to take care of you, so you'll have the strength to take care of your mom!

 

[vzandt]

I agree with Katie 100%. The ones that are there for you are the keepers.

 

[Barbie]

you sound like a loving young woman--don't let those "friends" bring you down. you def need to talk to someone, and it may be better to talk with a professional because they will not judge you or be negative about you feelings. It would be so great t o find a friend who can deal with the difficulty of your life, but that is not always possible. that is what makes a counselor so great. do you have another adult in the picture who can help you find one? Perhaps a counselor at school? If your mom is on hospice sometimes they have free counseling.

talking with a counselor may also make you feel more free to be fun and upbeat with friends your own age too.

By the way, my husband is also at 5 years and also at a stable point. It is hard and I Understand.

 

[Chase_Corin]

I had a few frinds like that, thankfully no family members had that reaction.

Those friends dissapeared after a while because there were only in the friendship for themselves. I didn't complain all the time or anything about my father but when I did mention my dad's illness they would sigh and change the subject to somthing involving themselves.

A real freind/family member that will be there for you no matter what will listen to you. Help soothe your fears and help you cope. I know that those friends have and will be there for me. My father passed on October 31st so less than a month ago. My friends rallied to my side. I have never felt more supported and loved. I have had friends call to make sure I am okay, stop by out of the blue, send a note or text to let me know they are thinking of me.

We all know that ALS dosn't have a cure, and that reality is harsh and heartbreaking. None of us thought that dad would pass that day. It felt like I was watching a movie. He was still able to walk, could talk a little but still and was sitting in his chair watching TV when he suddenly stopped breathing. Everyone was shocked it happened so quickly and quietly.

Those people that have been telling you that your bringing them down and that you need to stop talking about your feelings have no grasp of what this disease is and how it can ravage a person and their caregivers both physically and mentally. They also don't know how quickly things can happen. You are intitled to every feeling and emotion your feeling.

The people that don't understand that and want you to cheer up and forget about ALS must not visit you or see your mom. ALS isn't invisable its in your face and unavoidable. So maybe you should tell those friends and family members to come visit before they tell you how to feel. Come see your mom and how you and she are dealing with things before they tell you that your bringing everyone down.

You are allowed to feel bad when you feel badly, You are alowed to complain when you feel overwhelmed, you are allowed to cry when you feel sad and most of all you are allowed to feel how you feel. Your not a machine, you can't just ignore your feelings. If those people can't understand that come here and I am going to send you great big huge bear hugs We understand and will be here for you, but you need an in person support system so gravitate to the people who support you. Your a good person, take care of yourself and your mom and everything else will fall into place. *HUGS*

 

[skipper66]

Jen D,
I see a counselor to help me cope with my dad having ALS. It does seem to help because other people just don't understand what my family is going through. They just want to ignore reality and I think part of it is fear on their part. But, true friends should never tell you that you bring them down. That is just plain wrong. You sound like a wonderful daughter and like Elaine said you are keeping your mom up. Hope we can be of some support for you on this forum. Take care, Kim