Whiney-wimpy Thread!

[SalpalSally]

Don't have PT here at the home anymore. Too weak and arthritic now.
I do as much as I'm able. Bed exercises are just not as fruitful as floor exercises.

I hate my life now. Sorry to be a downer, but nursing home life is not for me.
Some can learn to enjoy it and maybe I can, but not yet. I'm too young for
This...LOL. Some have been living here for over 20 years and are younger than
I am. Pray for my strength please.j

[Jen's Solitude]

Nothing wimpy about this thread Sally! I'm glad you feel free to share your feelings rather than keeping them bundled up inside. I can attest to the power of prayer to enable us to endure difficult situations beyond our control. I hope you keep asking for divine help since we are assured that our Heavenly Father truly cares about our suffering. "A heart broken and crushed, O God, you will not reject." (Psalms 51:17)

[agate]

That's a shame about losing out on the PT. Is there any way that you could change that? Was it somebody's decision that you're no longer "entitled" to PT? Could there be an appeal on that decision?

If you know you need the PT, and you do, I hope you'll stick to your guns and get it.

Did you look into ways you could go home? If you didn't get any help through an ombudsman or social services coordinator there on the premises, what about agencies that provide home health care?

Do you know anyone who uses or has used an agency? That person might have some ideas about which ones are good--reliable, trustworthy, reasonably priced, sending out capable people who can provide genuine help.

Or maybe you used an agency when you were at home? Why not give them a call and explain what you want and need?

[Jeanie Z]

:) Sally I am sorry you are not getting PT. Like Agate said maybe you can get them to reconsider. You are in my prayers daily and I will add some more. Thanks for sharing your feelings. We love you. Jeanie :)

[tic chick]

hey sally !

I wrote about this in the "activism and advocacy" forum a few years ago. I don't know if your pt services are provided by medicare, but if they are, you can appeal a decision to stop pt. pt can't be stopped even if the patient shows no further progress, as it can be used to maintain current mobility.

here are some websites to check out to see if you can get medicare to redetermine your case:

Only registered and activated users can see links., Click Here To Register...

Only registered and activated users can see links., Click Here To Register...

Only registered and activated users can see links., Click Here To Register...

i hope this helps and if you're not covered by medicare, sorry for taking up space here. i understand your frustration and yes, you are too young to be bed-bound. when my mom was in the nursing home, they asked me to sign papers that let medicare discontinue her pt. this was before the court decision that decided that medicare can't deny services even if pt will not improve the patient's condition. my mom mostly liked pt, especially when this one cute therapist was working with her. i thought the interaction and attention from the therapists was a good thing for her, too.

i'm glad you can vent and get support here. so many people care...

thank you for sharing,
jeannie

[Catdancer]

I'm so.sorry. as you know, nursing homes and I don't get along, either. You're right, bed PT isn't nearly as effective as actual.PT. I hope you consider tic chicks excellent post about appealing, and see where it might take you.

[SuzE-Q]

You whine away, Sally.

You are definitely entitled given how many unfortunate changes and sacrifices you've had to make lately. Vent, whine, complain, cry...whatever you need to do. Life is not fair.

D@mn MS.

[Gary]

You whine away, Sally.

You are definitely entitled given how many unfortunate changes and sacrifices you've had to make lately. Vent, whine, complain, cry...whatever you need to do. Life is not fair.

D@mn MS.

As usual Suz put it much better than I could. T/C has some excellent links. I am of the opinion that moving is important. And the PT people are trained to get you moving. They know what works and what doesn't work. It sure sounds like you need a patient advocate to help.

[Sunshine]

How aware is your daughter of your situation. When my MIL was in nursing home the last two years of her life, I was her constant advocate and got her what she needed. When she got hit by a car before that, I advocated for her and her two roommates -------so, Don't be afraid or shy about leaning on your kid--- tell her what you need her help for.

[Pegakafarmgirl]

Sally my girl, U have every right to whine, and suggestions, are very helpful,,hang in there,, {Sally}

[stillstANNding]

Sally, I know the point about physical therapy Preventing us from getting worse is a valid one. Perhaps your NH doesn't encounter many MS patients. They should look into the situation on your behalf. Or your daughter, as BBS suggested.

It is a sucky situation (learned that word from you). I hurt for you.

Tic- Chick, great to see you here and w such useful info.

Love & chocolate,
ANN

[Earth Mother 2 Angels]

((((((Sally)))))) ~

I don't think you are whining, and I certainly don't believe that you are wimpy. You are justifiably unhappy with your circumstances.

You have rights. You have the right to live where you want to live. You have a right to appropriate care, including any medications, therapy, and treatments you need.

You worked hard and contributed to The System through your taxes. You paid into Medicare and Social Security. You're paying for Medicare and supplementation now. You're paying for the nursing home care.

It's time that you start getting what you are paying for!

If I could, I would pack my bags and get on a plane to fly to you to fight for you to have what is your right, and what you need and deserve. I've been an advocate for 46 years, and I know how to get things done. It takes fighting. It takes persistence. It's very frustrating at times, and it's exhausting.

But, of course, I cannot do that for you (I promise you, I would if I could). And while we can all offer suggestions to you to battle the System and to advocate for yourself, or find an advocate, social worker, ombudsman, etc., we can't do that for you. We would, if we could.

I would imagine that you're just plain tuckered out, and the thought of pursuing remedies is tiring for you. Even overwhelming. Perhaps you feel defeated and like you're being forced to be resigned to your fate. It's difficult to stir up the necessary energy to fight bureaucracy and reconstruct your world/environment, when you feel this way.

But, you need to start the ball rolling if you want change. If you could just reach out to a few resources, tell your story and explain your needs and desires, perhaps you will find the help you need. Someone, who will take on The System on your behalf.

Someone, who could coordinate all of your home care needs, equipment, supplies, careproviders, etc. so that you could leave this nursing home and return to your own home.

That kind of help exists, but you (or someone on your behalf) have to seek it out. You have to ask for help to get help.

We all love you, and we all want you to receive proper care and to be where you want to be.

Don't be afraid to reach out to ask for help among the resources available to you in your state and through the Medicare program. Let your children know that you want to return to your home, if that is your choice, and ask them to help you accomplish that very do-able request.

If my son, Jon, can live at home, so can you. People on ventilators live at home. You can live at home again, if that is your choice. Just reach out and ask for help, Sal.

Many healing and strengthening prayers on their way for you daily ~

Love & Light,

Rose

[Parsi]

I have nothing more to add. Just hugs.

[Virginia]

Sally, like Parsi said, I think everything I could say has already been said. Look at the sites that Tic Chic provided to you. See if you think there might be anything at all that your daughter, step-son or anyone you know might look into for you. There are good suggestions on here and I just hope some of them help you.

You are not a whiner. Just keep coming on and talking to us. Maybe someone else will come along who knows something that will help you. (Hugs to you)

[SalpalSally]

One good thing did happen just now. Nurse told me that Doc took me off med
that is causing me bad sides and upping my prozac. I pray it works! Yeaaaa!

Thank you all for being with me through my suck filled journey! HUGs!