MS caregiver

[Laith]

Hi, i’m the daughter of an MS patient, it’s been very difficult for me especially with it progressing to deal and accept the changes. I hate seeing her suffer. I miss her. Every single day. I go through the stages of grief almost everyday. I’m weighed down and i feel like no one can fully understand what im going through. It’s affected her cognitive function tremendously and that has been the worst of it all. It seems like i lost the mom i loved. I grieve her loss, i grieve for her being in pain, im hopeless and helpless. This is the first time i’ve voiced my feelings like this. Ive been trying to bottle it in for 7 years. It feels selfish to think of how its affecting me when i’m not even the one in pain.

[Sunshine1932]

It is normal to grieve and to feel our own pain. It is imperative that you release your pain in one way or another or you may end up getting sick with something yourself. Sending you so much love.

[Wtfisup in reply to Sunshine1932]

So true! 🫧

[SnowWhite1 in reply to Sunshine1932]

Hello! I am the one receiving the care from my wonderful husband of 21 years. But believe me, it hasn’t always been rainbows and unicorns! I used to always be adventurous and spontaneous, inventing things to do, and now dealing with PPMS, I spend days in bed, watching my husband turn into a quiet, sedentary person who spends most time in his office, I feel away from all the medical items laying around. He has gotten on an antidepressant, which is good but he needs others to just talk with. Of course he says he’s fine. Sweetheart, I just wanted to share a moment of my life with you to know you’re not alone. Disease is such an ugly part of this world. What my life is centered around is Jesus, and knowing that through His death and resurrection, and amazing Grace, I am healed and free in Jesus’ name!🥰🎈🏖️

[0ddsocks]

Hiya 🤗It's understandable you feel grief for your loved one xx

It's perfectly ok to feel everything you are feeling and not selfish in any way.

Have you maybe reached out to support groups nearby?

Sending lots of love

[LaLa_Bella]

You are not alone or selfish. It is hard job to do, especially a parent. There are programs that can help give you some reprieve . Respite care. I have MS and I watched my grandma (she raised me with my mom), just slowly disappear infront of me. She is still alive but she isn't there anymore. You are NOT alone..

I just realized you wrote this two months ago, I hope you're doing better.

[Wtfisup in reply to LaLa_Bella]

Her comment really touched me and didn’t realize it had been 2 months earlier either. I hope she replies eventually and knows that people on this site genuinely care. Really would like to know how she is managing.

[Wtfisup]

I’m so glad you wrote this. You are not being selfish and while you may not be in her type of pain you are still in pain as well. The cognitive part of disease SUCKS. Your Mom is so blessed to have a daughter that loves her so much.

Mine were 6 and 3 when I was diagnosed in 1995. I often wonder if my girls think about what is happening to me and if they realize I’m fading away and need to see them (and my 4yr old grandson!) as much as possible, especially on the ever elusive good day. I’ve told them. Does your Mom know how you are feeling? My Mother cares for me in her home. I’ve seen my girls 2 times in 2 years. It’s extremely challenging for a myriad of reasons for me to travel but I flew to them both times.

All you can do is love her and be there for her and acknowledge that you both have pain and both are grieving loss. Then celebrate what remains.

Sending you prayers, positive energy, happy thoughts, good vibrations, peace and love! 🫧

[BlueMusician]

I'm here for this exact same reason. My husband has had multiple sclerosis for 30 years and we've only been married for a little less than two years.... I've noticed it progressing and it hurts me so much. I was looking for a place where I'd be able to share my feelings with others who are experiencing hardships in caring for someone with MS