Lack of support

[missluuluu495]

With the time I have left, I want to live my life on my terms doing what makes me happy. And that’s spending time with my young kids, preparing meals they enjoy, and keeping my home organized. But my family tells me that I’m being unreasonable because I can’t do anything and rely on others to help me do these things. They tell me that they hate my facial expressions and the sounds I make. But I can’t control it. I’m not mad, that’s just how my face looks. I’m not sad when I cry or frown. But any emotion; whether happy, grateful, sad, or frustrated will make me cry or frown. They tell me I can’t blame the disease, that it’s me who’s pushing them away. I have met few people who have provided me with compassionate care. So I gravitate rowers towards those people. But it hurts that the people closest to me hurt me.

Thank you for listening.

 

[KimT]

Hi,

Have you been evaluated for emotional lability? That can be part of this disease in that you cry or laugh at inappropriate times.

I've lost many friends who either wanted to control what I was eating (I eat healthy by choice) or who just couldn't understand why I had low energy and needed short visits/rest.

As we lose muscles in our face, it changes. Our voices change. We certainly can't control this. You are the same person you were before ALS except you have a disease that changes you.

If finances permit, we should all live our lives the way we wish and our families/friends/carers should honor our wishes.

I spend a lot of money and time with my relatives before ALS. Now that I'm conserving my funds and not throwing parties, they rarely see me. I don't have an immediate family (husband or kids) but I do know who my true friends are.

Maybe your family would respond better to a written letter from you telling them your challenges and wishes. Some people are reactive and need time to process their own grief.

I'm sorry for what you are going through.

 

[Loricoss]

Hi Misslulu,
I’m so sorry for your struggles. I can somewhat relate to the family and friends understanding what you do and don’t need them to do/say. it is very frustrating to constantly be expected to have a smile on your face and happy attitude. They don’t understand all of my limitations, and it is very hard to describe. I am currently living with my mother, who is elderly, and somewhat disabled herself due to an autoimmune disorder - she is my caregiver.
It is very disheartening for friends and family to always think I should be doing more. Also, they love to say “oh, you’ll be OK, don’t be so morbid”. I am not being morbid, but I would like to discuss certain plans for when my time comes while I can still speak. no one really wants to hear it or discuss it. I do what I am physically capable of, even if it’s not that much and grateful for the abilities I do have. I do not have a significant other or a good support team, so it is scary to think about what will happen down the road.
Do you have any speech assistance devices, which can help you communicate your mood or feelings better?

 

[missluuluu495]

Thank you for responding. I’m taking Nuedexta for emotional lability. I mentioned to my doctor that I’m not sure it’s helping. He said it might be worse without the med.

I’m simply asking to do the things I love. It’s small things like baking bread, buying groceries, making meals and taking the kids to the park that’s in walking distance.

I use an app on my phone to communicate. They said they can’t stand hearing the emotionless robotic voice.

 

[KimT]

I'm sorry. It makes me both sad and mad. The things you want are not big asks. They will feel bad when you no longer can do them.

I hope things improve with your family. Were they hard to deal with before ALS?