Frightening Trip

[SalpalSally]

Today was my last PT/OT that Medicare will pay, so I'm sad and weary.
I don't know if the nurses/aides will get me up or not now. That's the
way it's done here??? It's a scary trip anyway, because they leave me
in the WC for too long and I tire and hurt after awhile.!

I wish they could just do as I ask and put me back in bed after a reasonable
time. Oh well I.ll work on it. In the meantime, have to keep myself as able
as I can so I'll be able to move myself in the chair. Damned if I do and if I
dont! I'm praying for my strength.

They are short handed here so I have to take what I can get.

Love Sally

[Jeanie Z]

:) Hi Sally. I am glad you are getting in the wheelchair for part of the day. I hope they will help you back to bed when you ask. It is a shame your OT and PT are ending. Did you find out if Ohio has an ombudsman? Or a department of Elder Affairs?

You do need someone to go to bat for you. Is your daughter's exascerbation stopped yet? You are in my thoughts many times a day and in my prayers. With love, Jeanie :)

[agate]

Sally, I'm so sorry things aren't going the way they should be for you.

I don't understand the power shift that seems to happen in nursing homes. Why isn't the patient mostly in charge? Why can't the patient give the orders?

Oh right. The staff are experts and know what is best and know what things to do "for your own good."

Except that so often what they're doing is for THEIR convenience--when they aren't overloaded (and they're almost always overloaded), when they can pencil you in to their busy schedule.

Why shouldn't you be able to tell them, "Hey, I've been in this WC too long and I"m starting to hurt. I need to rest for a while please"? and why shouldn't they pay attention to that and do as they've been asked?

Wonder if loud bossy people get things their way more often?

[stillstANNding]

Sally, I am so sorry this happened to you. I hope you are not suffering.

I have been to see my grandmother in a nursing home. While walking down the hall many people asked me, a visitor, to please put them back to bed. I think it is common to keep patients up too long.

Could you tell them you are going into spasms?
ANN

[Frog42]

Wonder if loud bossy people get things their way more often?

Probably, if for no reason other than to shut them up.

[Catdancer]

Yes, the PT restrictions suck. They're money based: Medicare won't pay beyond a certain number of sessions, and then you have to 're-certify, which means demonstrate significantly decline, yet show that PT will help! Crazy system. It is the same in all nursing homes, still not exactly the nursing homes fault, but it sucks all the same.

As for getting in and out of bed: yes, the aides (not the nurses) will do that. But you have to ask each time. You can't say, for example, "ok, now that I'm up, I want you to help me back into bed in two hours". Instead, you have to call them to get up, then call again when you want to be put back. Then if you want to get up later, call again.

If you know, say, that two hours is about as long as you want too be in your wheelchair, then start asking to be returned to your room and to bed a half hour before that. If they don't respond immediately, call them again. And again, until it's done.

Same for getting up. If you want to be in your chair by 9 am and it takes them an hour to help you to the toilet, and then help you dress, then call them at 8 am...and keep calling until they're there.

I know a lot of us were brought up to be not willing to draw attention to ourselves, not demand attention, not be demanding help. This works ok around friends and family. ***These people are PAID to do this job!**** you are not imposing on them, you are not demanding anything out of the ordinary. ***You are telling them to do their job, and reminding them if they forget***

Obviously they can't stand in the room and respond instantly to your needs. And aides are usually overworked, underpaid and sometimes working double shifts. So I've learned to be a BIT forgiving, but also pretty clear about who pays their salary, what their job is, and they need to do it. I try to do this pleasantly, and thank them....But also call in the supervisor if I'm not happy.

[Sunshine]

What type of movement are you able to do in your bed Sally? Are you able to move arms? Legs? Able to lift your head off pillow while lying on your back?

[Virginia]

Cat, how do you call them? Do you call them just when they pass close enough by? You don't have a call button do you? I wish the patients did have one in Nursing Homes. I've heard of this happening way too often.

Sally, sorry the PT/OT is going away. I wish there was some way to get it because it is so important. I can't think what you can do, but maybe someone will come around who can.

[Catdancer]

Cat, how do you call them? Do you call them just when they pass close enough by? You don't have a call button do you? I wish the patients did have one in Nursing Homes. I've heard of this happening way too often.

Sally, sorry the PT/OT is going away. I wish there was some way to get it because it is so important. I can't think what you can do, but maybe someone will come around who can.

There were call buttons attached to my bed, a pull cord by the toilet in my bathroom, and another button by the door into my room. If you're in a public room it's a bit more difficult; usually you have to get the attention of the aide(s) supervising the room (there's always at least one side who is supposed to be keeping watch). Calling out as they pass by the door is the least effect, as they're usually on their way to responding to another call. Unless it's an emergency....you've fallen out of bed-- they'll get back to you, but it will take longer.

Remember I was in only a middle of the road place, not top quality, so even where I was there were three ways in my room to get help. So I don't know what stories you must have heard. I know that if you go down the hall of almost any place, patients will plead with you for help, that no one has helped them "for hours".....I saw them doing this when an aide has just gotten them out of bed and into the day room, and left to get another patient... so be sympathetic, but don't always believe them....

[stillstANNding]

"Them" is "us."

ANN

[Virginia]

You're right Ann. You said it all in three words. Thanks.

Cat, that is how I saw this type thing. Walking in the halls and patients would be slumped over in their w/c with something tied around their waist to keep them in the chair. They would look and seem to be so tired. I saw this a number of times when my Grandmother was in there. She did not have a call button by her bed, but this has been many years ago.

[Catdancer]

"Them" is "us."

ANN

No, not fair. We here right now are not yet dealing with dementia, are still self aware, still aware of our environment. There are many who are not, many for whom 5 minutes can seem like five hours, a few hours just minutes. Patients who can eat breakfast, be helped to the day room, and once there, demand to be taken to breakfast, then call out to a passerby that they haven't been fed, that they are being starved, that no one has helped them for hours. Those are the patients I'm talking about. Not us..yet..

[Catdancer]

You're right Ann. You said it all in three words. Thanks.

Cat, that is how I saw this type thing. Walking in the halls and patients would be slumped over in their w/c with something tied around their waist to keep them in the chair. They would look and seem to be so tired. I saw this a number of times when my Grandmother was in there. She did not have a call button by her bed, but this has been many years ago.

You will still see patients like this. There are times when keeping them upright with soft restraints is better than allow them to lie in bed all day. Being in bed leads to all sorts of other medical issues, starting with pneumonia, pressure on the heart, digestive issues, then bedsores, skin breakdown, not to mention muscle atrophy, bone loss which leads to serious issues like loss of bone density. Staying in bed can also hasten dementia --the patient loses track of the normal wake/sleep cycle, the ordinary daily routine of up in the morning, breakfast, lunch, dinner, maybe a short nap in the after noon, bedtime. All of which help a patient keep some awareness.

I have been quite critical of nursing homes on this board. Have been critical of them for forty years, will continue to be until I finally die, probably in one. I have, in my past professional life, been in some pretty ugly ones, and now first hand as a patient been in at least one hell hole myself. But until we find a way -- we as a society, we here as individuals -- to live out our lives truly in dignity and with the health care we need - we should also take time to understand what we might face in our end days, what practices that might seem cruel on their surface might actually be keeping us alive for a few more days or years, and decide which we would want done to and for us. Do it now before you can't , do it now before your family has to decide for you. But know what are good practices and the reasons behind them, before automatically assuming they're bad. Then when you see something in action you have at least some idea of what might be happening, and be able to better discern good from bad.

[SalpalSally]

Most of you understand only too well what I'm going thru. I am able to lift and swing
my arms and legs and do that every day in the bed. Also able to raise my head and
shoulders. I don't get to sit on the edge of the bed though. My back is weak. That's
why I want to get up in chair to strengthen back!!

[SuzE-Q]

Sally, I think I saw some inexpensive gizmo on Amazon that allows you to sit semi-upright in bed with this thing to support you, so you could read, etc, but not strain your neck, etc, it helped support your back in close to an upright position, as it would be if you were sitting in a chair. Maybe Cat, our Amazon wiz, can find it.

It might be just what could help you whilst in bed strengthen those muscles?