my baby is slipping away

[jalone]

My son was diagnoised at 16 he is now 24, in a nursing home. He can no longer speak, or swallow (has a feeding tube). He can longer walk and is incontinent. I'm beyond hopeless.
Is there anyone, anywhere who could possibly know what this is like?

[gomer]

I am sorry to hear about your son. MS can vary from one extreme to the other. In one way I wish I could better understand what its like; but then, on the other hand my MS has been a very long slow, mild progression over many decades.

I do know a lady at a local Sam's club, her adult son also progressed rapidly. I later came to discover she had watched my own walking ability decline over the years, when one day she said something about my walking a little better one day.

Now I still walk a little, but use a power-chair and scooter much of the time.

Prayers.........

Gomer My heart goes out to both you and your son.

[Tawanda]

My son was diagnoised at 16 he is now 24, in a nursing home. He can no longer speak, or swallow (has a feeding tube). He can longer walk and is incontinent. I'm beyond hopeless.
Is there anyone, anywhere who could possibly know what this is like?

(((jalone))) Your post breaks my heart. I wish I had the answers. I can listen, however. How have you been spending your days with your son? Are there any professional counselors where your son is that you respect enough to talk to? This sound like the toughest thing you will ever go through. During my dark times, I forget about taking life one day at a time, but concentrate on one hour at a time.

[onlyairfare]

Your situation is so difficult jalone. Please know that you have our support and listening ears here at MSWorld.

[Citlalli]

My heart goes out to you.
MS can be such a cruel predator. If we had stem cell research in this country, there would be hope for people as hard hit as your son.
I hope you're able to receive as much counseling and support as you need to enable you to give him the love he must so desperately need.
It's good you turned to this amazing community.

[rascal00]

HUGS

HUGGSS TO YOU ALL..

[Thinkimjob]

Sorry, pressed submit too soon. I am so sorry for you, and no, I don't know what it's like.

[rdmc]

I'm so sorry to hear about your son's condition. As a parent, I cannot imagine the pain and frustration you deal with on a daily basis.

Please keep posting, we may not have walked the road you're walking, but we can give support and a place for you to share how you're feeling.

[Tawanda]

Dear Jalone,
As I am leaving to pick my daughter up from school, and I haven't been able to stop thinking about your post. As one who has M.S., I relate to your son in some ways. Just because I am walking today, does not mean I won't be much worse off in the future, as you never know what this dreadful and unpredictable disease is going to bring. My mother had M.S., too, and was much like your son...very progressive. I seem to be doing better. Why? Who knows? I just wanted to say that the worst thing this disease could do to me would be to take down any of my family members by pittying me, mourning me, or becoming exhausted having to care for me.

My family can only honor me by going forward with their own lives and continue to seek out joy in their lives, no matter what happens to me. I couldn't stand for them to suffer on my behalf - that is the WORST thing M.S. could do to me, hands down. I can only guess that your son does not want you to suffer, as hard as it may be to hold your chin up right now.

There is a "Caregiver" section on this site, which may be of help, as well as "Chats" (although I have never participated, because I can't type fast enough!). I know that there are also tons of sites specifically devoted to caregivers, although not necessarily for M.S. patients.

Are you eating? Taking your vitamins? Taking walks? Do you have people to lean on? We are thinking of you and your son, and I, for one, am a "prayer person", so you are getting prayed for by some stranger in CT, for what it's worth. You are not alone.

[Seasha]

Dear jalone,

No, I can't possibly conceive what you must be going through. It just breaks my heart to read your post. I am truly sorry you have to be a witness to this and sorry you son has to go through this. Life seems to be terribly unfair at times. I will send you and your son good thoughts and prayers. He is lucky to have you by his side

[SNOOPY]

Is there anyone, anywhere who could possibly know what this is like?

Hello jalone,

No, I can't even imagine what it's like I am very sorry and I do hope you have a good support system which includes excellent doctors.

Take care of yourself and please come back to talk...we do care

[bammaw]

Though I cannot know how you feel I am deeply saddened and so very sorry for you and your son. A question I ask the Lord, why them and not me? At 61 I seem to have such an easy time of it. Unlike your son, or the nephew of my lifelong friend. He is in his mid twenties and lived with type 1 (juvenile) diabetes. Now he deals with a very aggressive form of MS and going down hill way too fast. It breaks my heart to see one so young being so incredibly impacted by this disease. I pray God will bring you comfort in some small way through your heartbreak. May He provide the perfect, tenderhearted, kind and skilled caregivers to tend to your son's very specific needs in this "season". May the Lord surround you with "that peace that passes all understand"....for how else can we find peace in such a tragic situation. This is beyond anything a loving parent should have to bear...certainly not alone. I pray too that there are those around you who will give you the help and support you need.

God be with you and with you son and family.

[CasinoKathy]

A warm welcome jalone. No, I can't imagine what you are going thru. Your story brought tears to my eyes. Will keep you and your son in my thoughts and prayers.

[kelm10]

my love sent out to you

The closest I can understand, which is not very well, is when i was 19 I worked in a nursing home. We had a young lady like your son. For me as a young nurse, younger then her, it was very hard to watch.

I am sending peace and hugs to you. I was not that ladies mom, so I can understand only a little bit of your despair.

We also had a lady that was bedridden, and by the time I quit she had been in a nursing home for 17 years. She could only move head and talk. Very alert and oriented.

This is the first thing I thought of when I was diagnosed. I cried for days.

I asked God why this happens like this. But, many of us learned alot of patients and compasion when caring for them, along with skills.

God bless you and your endevor.

[tommylee]

So sorry to hear your painful story.

I think watching my sons body fail would be more difficult than feeling my own body fail.

I cannot imagine how horrible and helpless that would feel.

It is easier to discount our own lives and live with what we have.
To watch as your own boy has his life and health taken from him day by day sounds like hell on earth.

I will pray for you and your family today. I will pray for blessings on your family.

I wish I had any idea or advise for you but I fear this type of pain never goes away.
It is the sort of experiance people never get over. It seems that people just learn to live with the pain?

I cannot begin to imagine the horror.
Please try to take good care of yourself and don't be affraid to ask for help.

Again, very sorry for your pain and sorrow.