How Can I Help My Mother

Question

My Mother has MS for 13 yrs. now and it has been getting worse and worse. She started off with a Cane, One Crutch, Two Crutches, Standard Wheelchair, Mobile wheelchair and now she is on bed rest most of the time. She is paralyzed from the neck done and is literally skin & bones. I believe she weights about 65 lbs. now. She can barley talk now because she is having intense mouth pain. I have no idea what to do anymore. I just want my Mom back. I know I won't be able to get her 100% back, but I would love for her to stay around longer, and at the stage she is in now I doubt she will. I need help badly. I will take any advice. I just wanna know what to do. I feel so hopeless and I'll do anything. Please help me save my Mom.

summerluvr · Answer

I had a medical mouthwash when I had burns in my mouth from chemo.  It has lidocane in it to numb the mouth (you need a prescription I think? but ask the pharmacist about it) Also they made me a special mouthwash becasue it was too painful to brushh etc  that was just distilled water and baking soda.  It helped some too. Can you mom suck on ice chips at all? or maybe swish some then spit them out? (not the big cubes, but crush them into smaller peices or in the blender).

kate305 · Answer

What are the swaps called? A Nurse that stops by and takes her blood "says" there's a mouthwash she can start using to prevent the pain, but no word back on it. People have told me to try getting her to use medical marijuana to help her nerves and get her eating more again. I just don't have enough information on it and we live in DC so I don't think its legal.

kate305 · Answer

My Older Sister cares for her. My Mother and siblings refuse to put her in assistant living because of awful stories we have heard about them. We have Aetna insurance and they don't do much. She goes to Georgetown Hospital, but for some reason everything they promise her never comes thru. We have been told about all these wonderful drugs and cures, but still, nothing! I just want her to at least gain weight and be able to get out of the House. She's really struggling and it's hard to watch.

Lulu54 · Answer

Kate,
I am so sorry that your mom, you and the other people close to her are going through this.  I hope you will spend time with your mom, ask her what will give her comfort, share intimate thoughts together and create memories. Reach out to her medical providers and the MS groups to get extra support for her and you.  

I wish there were more specific ideas I could offer - gentle hugs to you and a few for your mom, too.

L

SarahL2491 · Answer

Terry Wahl did NOT get rid of her MS.  If she had, the MS society would be endorsing her left and right.  Enuf said on that subject.  Back under my rock

You need to make sure your mom doesn't get bed sores from being in one position too long.  They are painful and hard to heal.  You are a wonderful daughter to be concerned about your mom!

Shell is right, reach out to the MS society in your area for resource information.  You didn't say if she has any type of insurance that might provide home health to assist you in her care.  

There are swabs that you can rinse your mom's mouth with, they are like lollipops and it will soothe it and lubricate it.  Ask your drugist if you can buy them without a prescription.  A call to visiting nurses can also give you a list of things you can get to give her comfort.  PM me for a bigger list, I am an RN.

Bless you for caring!

sllowe · Answer

Hi Kate,

I am so sorry to hear of your Mom's progression, you must be heartbroken, and feel helpless all at the same time. 

Who is caring for her? Is she in some sort of an assisted living facility? With the paralysis she is experiencing, it's important she get emergency care with any sudden changes, and frequent visits somehow to the neurologist.

Would like to help, but would like to know a bit more before proceeding. There are services you can reach out to in the meantime in DC. Look up your local chapter of the MS society. They can help you, so you can inturn help your Mom.

Thank you for trusting us to thoughts. I'm sure others will come along and pass their best to you as well.
-shell

Red_Star · Answer

Dr Terry Wahls reversed her secondary progressive MS.  She has an AMAZING video presentation on this on youtube: TEDxIowaCity - Dr. Terry Wahls - Minding Your Mitochondria.  Her book is called "Minding My Mitochondria 2nd Ed. - How I Overcame Secondary Progressive Multiple Sclerosis and Got Out of My Wheelchair" by Dr. Terry L. Wahls