Nursing home nightmare
 

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.

:hug: I hate nightmares. :hug:

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. :hug::hug::hug:

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.

I would rather go to a home than my kid(s) wanting to take care of me.

I don;t want to feel like a burden to them or not be able to take care of them. That thought makes me very sad.

I don't mind going to a home if it ever gets that bad. As long as it is a nice place and they visit me or take me on outings or something.

I don;t know. Thinking about this depresses me. I am scared about my brain.

My mom is in a nursing home...
 

My mom has PPMS, and has lived in her current home for 10 years now...she is only 56 years old.

At first, it was very hard for her because she had to adjust to the schedule, staff, and new surroundings, but in the end, she felt safer. She has her own room, which is not large, but it fits her bed, entertainment unit, dresser, mini refrigerator, and a bedside table. She also has a small closet, and a sink.

The home she is in is probably one of the better ones. If I ever have to move into a home, I would choose hers if given the option. Walls are painted cheerily in the commons areas...and when my mom's room was repainted this spring, she was allowed to choose the colours.

The home has a small patio area for barbeques in the summer, and there are areas in the home for residents who have small, friendly pets (cats and dogs). There is a beautiful chapel, and in the large hallways of the home, there are nooks and crannies with murals, park benches, and fire places to relax beside. There is also a large bird atrium in the main hallway.

Her home also has lots of activities available to residents. Once a month they have optional catered meals from favourite restaurants, and there are special guests and musical talents frequently performing in the main common area.

My mom has joined a horticulture group there - with help, she is able to prepare plants in the late winter which she tends (with assistance) in a box garden outside in the spring and summer.

My mom is not artistically inclined, but if she were, she could join the art group, where they paint together. Paintings are framed and displayed throughout the complex. There is also an in-house radio station for residents who want to host their own radio show for the home.

In the end, it is a nursing home...but a nice one. It took time, and some grieving in the beginning, but now my mom is thriving there quite nicely.

I hope that your nightmares end, and that no matter what comes, know that you are still you...no matter where you live.

Jayne :hug:

That does sound nice, Jayne. I don't know of a place that nice here in the states, that wouldn't cost more than we could afford.

I wish there were such places and affordable for all. That would make thinking about it a little less scary.

Thanks for sharing your Mom's story with us.:hug:

Money seems to be the answer, When dad started showing signs he needed 24/7 care, we got him a lovely private place with huge private troom, with a living room section in it (it was huge!!), private bath, lovely dining room not far away. Then the Alzheimers got really bad. He ended in a locked ward, private room but not so big. His wife "sprung" him, but she could not care for him. Think any money was gone now, he ended up in a bed most of time with a room-mate - know we never heard that guy speak, a real nursing home, hot, stinky, depressing. Some lady met up with my kids in waiting area and talked about severed heads and stuff, which amused and delighted the 10 year olds. His old wife Sprung" him, we didn't protest, he received better attention and care from that old woman than in nursing home. She eventually hired a home health aide, who got a cell phone in the old ladies name and called a foreign country all the time on it. My step-mother, not really reading the bills, paid it. My Dad died at home, his wife got sick, later ended up in a small room nursing home. She got sick, ended up in hospital, didn't want to leave, they let her stay, she died there. My old aunt went to a "cheap" Medicaid home with a a very disturbed room-mate. Lost many things. I don't know if my rich cousin interceded (she had no kids and was everyone's favorite aunt. ) She ended up in a real house, private room, run by a lady and seemed to do better. My Mom didn't ever want to be an old lady, seems she got her wish with lung cancer, died at 63, having never gone anywhere but hospital. Like her, I hope to never leave home but doubt that's in my control.

This is so depressing. :(

My Mom was in a nursing home for 10 years. She had Alzheimer's. Amazingly, the lady who cared for her from the day she arrived there (and umpteen others) was still there when my Mom passed away. That's literally unheard of nowadays.....but she loved her job and the ladies she cared for. She genuinely cared - and you could tell. We were so blessed to have had her.

My Dad was in assisted living (can you say $$$$$$!!) and then a nursing home. He wasn't in the nursing home very long.....had a heart attack, then a stroke and then passed away in Hospice. His assisted living took every last dime he had...but it was worth it because he enjoyed his life there. He was there almost 3 years....and it took all $200,000 of his money.

My sister and her husband didn't have medical insurance. He was self employed and, although he made a good living they couldn't afford the high premiums. So, when my sister developed early-onset Alzheimer's at the age of 47 my BIL cared for her as long as he could. I am convinced if she had better medical care she might still be with us today. When it got to the point of no return and he couldn't care for her at home (I witnessed it....and it was BAD) she was placed into the only nursing home that had an available bed. While most of the people who worked there were nice.....some were just there for a paycheck and they couldn't have cared less about the residents they cared (?) for. I hated to visit her there. Hated the building, hated the smells, hated the fact that my sister who was only 10 years older than me was there instead of enjoying her grandchildren. :mad: She died there.

There are some really nice facilities here.....if you can afford them. If you can't you go where the State tell you to go.

DH keeps telling me what a great wheelchairu I could get with Medicaid in stead of our private health Insurance and money. He sees TV commercials and thinks other looks better. Being in a chair full-time I prefer the solidness, power, stability, tilt mechanism. seat with air and gel with air inflate automatically and deflate. So far, so good, skin totally intact, no pressure sores, stuff you don't think about when not in a chair. I fear under his watch I'll end up where I don't want to be. House in both our names,have some money (inheritance)in my name only, we'll see. He believes hype and that the government cares. I'm a little cynical.

Your husband can forget about medicaid with all of you assets.

gmi

Some homes have floors dedicated to those with similar illnesses. I remember visiting the spinal cord floor of a local nursing home and was amazed at all the people there. I asked about this and the workers told me they assign patients to the floor where they have the most in common. These patients were happy and carrying on like they owned the place! LOL That's the nursing home I told Jim we would move into when needed. He agreed since he had been there to visit once too. He worked for the Va at the time and I worked for the local hospital.

We also found out there is a veterans home in Quincy that we hear is nice. We've been told that we can live there together if need be. Someday we're going to ride over and check it out. They have stores, church, private acres, coffee shop, library, post office, etc.. It's like it's own little town within a town.

I don't ask my kids to care for us even though I know they would. All I ask is that they research and find a nice place and then visit often to be sure we're taken care of. If you walk into a place and the first thing you smell is urine, run. If you walk in and the first thing you smell is a strong cleaning odor, ask to tour the entire facility. Many times the facade looks great but the inside, not so much. Also, look for signs of neglect such as patients sitting lopsided in chairs lined up in a hallway tied with a posey. That's not cool at all. Ask about activities and if they are slim to none, look for another place. A good nursing home keeps their patients busy and happy.

I will say one thing about the nursing home where my mother stayed: from day one, the staff said "any time you want to drop in to see your mom, day or night, just drop in." I did that a few times, late in the evening, early in the morning, etc. And there was nothing amiss.

In fact, once I slipped silently up to her doorway (unannounced) just in time to catch an LNA with her arm around my mom's shoulders, giving her a little hug, and saying "I'll see you tomorrow, Ruthie. Sweet dreams."