My Mom

[shankar.yes]

My mom was diagnosed with PBP in May this year, she is 64 we went to the neurologist because the GP and ENT specialist could not find anything wrong with her throat, but she was slurring lightly. That was in May, now she has stopped speaking completely and only grunts, we use a note book in which she scribbles ( almost in a indecipherable way - she mixes languages, writes in english but words are of our native language)

She has been unable to swallow food for sometime now ( we started protein supplements and food beaten in a blender and made into smoothie) and her wt loss is rapid, she has limited use of hands and cant walk much, she now chokes even on water, yesterday we took her to ER after she had trouble breathing and was choking. She is stable now but has been put on rhys tube, she hardly shows any interest and only sleeps, doesnt even want the light to be switched on. I have been with her for 2 days in the hospital now, my dad is also there.
She seems to have a bit of dementia too as she writes the same thing again. She has a blank look for sometime now, her eyes seem a bit bulged. I thought she will have this trouble one year or more down the line but she has been diagnosed hardly six months back, though we suspect she has been affected for 1.5 years now.

I was in the hospital today and will go back in the evening...im afraid my dad is down a lot, since she was diagnosed he has done very little except being on her side, they moved in with me in Jun this year. I really hope she regains some of her zest and hope. Im worried sick and cry a lot these days.

Thank you for reading this,

 

[CindyM]

Hello Shankar. Welcome to the forum although I am sorry to hear about your Mom. You will find a lot of support around here. Our members are caring and knowledgeable. I hope we will be able to help. Regards, Cindy

 

[BethU]

Shankar ... I'm so sorry about your mother. This is a terrible disease that affects the whole family. Your dad needs your support as much as your mother does, I'm sure you know. It sounds like you will be carrying a heavy load during this time, so please remember to take care of yourself, too.

There are many medications that can ease your mother's discomfort; it sounds like she is getting good care, so that is a blessing.

Please keep us posted on her condition, and feel free to ask anything on this forum. Many members have been or are still caregivers, and will be able to offer you support and advice.

 

[Jeannie]

Dear Shanker,
I am sorry for your moms diagnosis. This is a horrible disease. My mil was diagnosed in Jan 08 and like your mom has progressed extreamly quickly. She like your mom can no longer speak, or really move much. The similaties are amazing, she too is also in the hospital know for breathing difficulties.
Where is your mom from? My mil is from Okinowa so it is becominign difficult to figure out a communication devise becasue of her spelling issues.
I am here if you need me. This is a wonderfully supportive site.
You are in my prayers.
In friendship
Jeannie

 

[Debbie53]

Hello, Shankar. My father went quickler than I could have believed, also. In a way it is a blessing, but it is so hard. It's hard to keep up in your heart and in your head when it's all so fast, every day something worse. You are in my thoughts,

Debbie

 

[brooksea]

Shankar,

My thoughts and prayers are with you and your family...

You are a special child for caring so much about your mother and understanding your father's concern about her.

I'm sorry ALS is progressing seemingly fast in your Mom.

My heart goes out to you.

 

[ronwv]

Sorry to about your mom. My mother is going similarly. Can still speak, but its gotten worse recently. Im sure shes glad you're there for her.

Ron

 

[shankar.yes]

Thanks a lot folks,

Im admitting my mom to the hospital in the next couple of days to get the PEG done, the NG tube seems to have been inserted a bit hastily so she has got pain in the throat and constantly shows us the throat and gestures that it is paining. She has got cold too, which is not good for her. I hope the PEG helps her a bit in weight gain,my father is highly devoted to my mom and takes care of her really well but he gets frustrated sometime as she doesnt even let him out of sight for a few minutes. The doc has given her a veritable cocktail of meds, incl pain killers, antibiotics and vitamin supplements apart from rilutor.

We really hope that she doesnt suffer much and are ready to help her in any way we can.

we are from India, & live in Chennai(Madras) its in South India.

 

[Al]

Our thoughts and good wishes are with you and your mom and family.

AL.

 

[shankar.yes]

Things are going from bad to worse: The PEG was inserted but the doc punctured her colon so they had to do surgery. When we thought that was enough, on 1st night she was put on oxygen, 2nd night she was moved to ER and yesterday morning they have put her on ventilator due to respiratory failure. Things are happening so rapidly that we are all going devastated, I thought she will be back home on 1st Jan.
We wait outside the ER and hope she recovers enough to come home soon.

The neurologist is giving hope that she can recover and start breathing on her own, She is weak and frail. I thought PEG would help her gain weight, they are going to try peg today by feeding water. Saw her in the ER, she has been sedated so she doesnt fight the ventilator.

Im worried sick and going crazy..

 

[BethU]

Shankar, I'm praying for your mom's recovery from this terrible episode ... and praying for you and your dad for the strength to help her through this. I went through a similar experience three years ago ... during an angiogram, the surgeon punctured an artery to my heart, and they had to do emergency open heart surgery, with huge transfusions of blood (18 units). I'm older than your mother, but I recovered from it. I had many people praying for me, and I know that helped.

Please stay hopeful for your mom's regaining her strength. I hope the PEG is working so that they can give her the nutrition she needs. I will keep you and your mother and father in my prayers.

 

[brooksea]

Shankar,

I hope your mother is doing better. I'm thinking about you and your family during this tough time!

I hope she can come home soon!

 

[brendapals]

Shankar,
My prayers are with you and your family,
take good care,
brenda

 

[CindyM]

Yes, Shankar, please give us an update when you have a minute! Cindy

 

[shankar.yes]

Sorry for not updating, she is ' stable' according to the doc..she got trachea done too. She is conscious and is continually on ventilator since 2nd Jan. She looks very weak but they have now started feeding from the PEG, she got pneumonia meanwhile but doc says it is reducing considerably. They take xrays and blood tests daily.

They tried to wean her from ventilator but didnt succeed, they are trying again tomorrow. How long could the weaning process go on? any idea? She is conscious and even weakly smiles sometime. I talk to her for about 15 minutes daily ( she isstill in ER still and visits restricted to one hour a day - me, my brother ,and dad visit her daily apart from a lot of relatives - the hospital has rooms on rent for caretakers and my dad and brother are staying there for almost two weeks now) and this is the first time since last post that i have come to office.

We are breaking our heads if the surgery due to colon puncture weakened her already weak respiratory muscles further..we thought that doing PEG would help her
she is unable to lift her hands now, i dont know if things could go so worse in such a short time..she always had aspiration issues but this time it went too bad.

The doc who did pEg told us today that my mom is very weak and may not be able to come out of ventilator. does any one know what time frame would an MND patient need ventilator support..we are thinking of buying one at home but the gastro said that we need to think over about the quality of life she would lead with a vent on..we are to meet neurophysician today. This is bad news but i have hope that she will come away from the ventilator soon and be back home, i sincerely hope and pray so.