Literally. I had a dream recently that I had to go to a nursing home. A lot of things are tied for first place on my list of "worst MS fears", including losing my sight, my ability to drive, my ability to walk, etc. But the nursing home spectre definitely edges out the other fears.

When I was a child, my beloved Aunt Carrie lived in a "home" in Brattleboro. I remember thinking how pleasant and cozy her little room was. She had a studio couch with toss pillows and afghans, old family pictures on the wall, lacy curtains, a desk filled with mysterious things and Canada mints...little wooden boxes and old quilts, etc.

She had her own little bathroom and a tiny closet, and she would "take dinner" with the others in a big dining room. It was like her big old house in Wardsboro squished into one little room. The idea of being in a nursing home someday far in the future didn't seem so awful to me.

Of course, that was not a nursing home at all, per se. When we finally had to bring Mom to a nursing home in 1998, it was truly a nursing home. A hospital-like little room shared with an incoherent roommate. Space for one small chair, and a little shared bureau. None of her own furnishings except a couple of pictures on the wall and a couple of little stuffed animals.

Her favorite sweater and sweatshirt disappeared in the laundry. The wandering dementia residents randomly walked away with her other "things", and I was forever trying to track things down, with little help from sympathetic but already overworked staff.

She kept wanting to go home, and the one time we (helpfully, we THOUGHT) said "this is your home now", she burst into bitter tears as she gestured around her very public "half room" and sobbed "this is NOT a home!"

Even though I know in my heart that it is not "things" that matter in this world, I feel very sad thinking of those who, along with their independence and physical/mental capabilities, also have to give up the "stuff" of their lives that makes their environment truly their own.

This would currently be my worst dread, as far as MS is concerned.

I hate nightmares.

I think we must all share the same nightmare.

My worst fear. Dh does the cooking, he changes my recipes to make them his his own (sometimes good, sometimes bad) My beautiful pantry is no longer organized, DH takes/borrows stuff I liked having at hand. I'd be terrible in a nursing home but DH's caretaking skills are limited. I am in a chair, don't drive, do hate the loss of independence. DH swears he and the kids would never put me anywhere. Maybe. My mind is sharp, I take care of things not too physical (no longer clean pool) but if I'm fully cognitive, would not make it easy for anyone. Hope it's never coming up. My kids are on brink of college, life, etc. I'm too much a Mom to ever foist myself on them. DH is it then. I'm not completely afraid, nursing care and it's paperwork I could do, not sure DH could by himself. And he is a good guy.

I remember my Mom's room at the "home". And my Dad's. And my sister's. Way too many loved ones in my life have ended up there.

The thought of it is a nightmare for me, too.

I remember my dear Grandmother being shuffled around from daughter to daughter's house. She would say to me, "Don't let them put me in a home with a bunch of old Women."

I was only 18 at the time and, when she said it the umpteenth time, I responded, "Well, Grandma, what if they put you in a home with a bunch of old Men?" She said, "Well, now, That might be alright." (She had been a widow for 25 years).

I think she broke her hip, which forced her into a Home. Once she recovered, she absolutely thrived! She had 13 children and waited on people all her married life. In the Home there were people she could wait on! She finally felt useful again!

I imagine Grandma is most likely an exception, but she really did well there.

Blessings, when I dread the seemingly inevitable, I play the "worst case scenario" game with myself. Guess it would have to be better than living under a bridge in a box, or in a 3rd world country, etc.

Hugs to you, honey.

The nursing home nightmare may be the reason so many MS'ers commit suicide.

We are in a situation different from many disabling diseases in that most of us still have a sharp mind and the thought of going into a facility with people who have lost most of their cognitive abilities is the real nightmare.

gmi

I think GMI is right on the money. Someone should start a nursing/retirement home for just PwMS. We have special needs and wants as to our care, when we need it. Ours stays may be permanent or temporary an we need specilized PT, Entertainment and medical care.

I'm serious about this...Let's ask NMSS to start one...I think that would be an excellent way for them to use some of our moneys..

I'd like to think I'll be Twink's grandmother when/if the day comes. That's who I WANT to be. The Apostle Paul said he learned to be content in any situation, but I'm still learning. And I'm a slow learner.

I WANT to bloom where I'm planted, be a blessing to others, make the best of a bad situation, let God use the tough times to glorify Him. And I know I need to take one day at a time and not worry about a future that might not even come.

But when people ask "what's your worst fear", well, that would be it.

Great Post B2Y! I think ending up in a nursing home alone is a big fear for everyone. My mom has begged me to never put her in a home. I hope we don't have to. I tease her all the time about taking care of herself so she doesn't break a hip, but at 71 I know it could happen. I know I need to be taking better care of me now, so my kids don't have to worry about it.