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My father was recently discharged from rehab. I was impressed with his care and made sure the staff knew it. I don't know if it was a factor in the quality of care, but the rehab center was located in a CCRC. He was not a resident of the community and he elected to return home with 24 hr care for at least one week rather than transfer to assisted living. (Knowing him, he'll drop the home care asap.)
I would rather die earlier than live in most of the assisted facilities. Unless you have someone coming everyday to watch over you, making sure you are properly tended to, you will be neglected. Most of those places are understaffed and the workers tend to care a lot less over time.
It terrifies me the thought of having to 'live' in one of these places. Been through it with my father and imho it's better to die quicker than linger on being neglected in these facilities.
I sent this to my dementia group last month when I was in Skilled Nursing for rehab from surgery. I had cared for my Mom (Alzheimer's) both at home and at a CCRC that she had bought into. Her place was not cheap; mine was outrageously expensive. The base rate was $520/day, but I was billed >1K/day once medications and everything one can imagine were added on.
The care was generally excellent, but I was there with many advantages: cognition, ability to stay on top of errors, short-term stay, did I mention cognition? Even so, I was extremely vulnerable, and got a glimpse from the other side:
===========
Nothing like being on the other side of the fence to truly understand what our loved ones go through, or the potential.
I cared for Mom both at home for several years, and while she was in her continuing care facility. She was in Assisted Living, having been kept there past when she should have been technically, because I was at her side to pick up the extra burden on the CNAs and keep her out of Skilled Nursing which was much more isolating.
Some weeks ago, I learned I have cancer. Not a good cancer. At the first visit with my Stanford doc he admitted me on the spot and did emergency surgery the next night to keep my leg from collapsing. I was in Stanford University Hospital for about a week, getting the most spectacular care one could dream of. All my life I've been a manager of things, health, etc, and for the first time ever I felt I could let go. It was amazing. I've dozens of remarkable stories of that time. I marvel at the miles by which they exceeded my expectations.
So, when I was transferred to the best continuing care facility in the area for rehab (into Skilled Nursing), I was sailing on that high. Then, bit by bit I started seeing some mistakes. Gradually I returned to having to manage my own care. Fair enough, this is a nursing home after all, but had I ever been spoiled! I've been here a week and will remain for some weeks more at least.
I'm not able to walk. Neither leg is functional so I need a wheelchair to get to the potty. It's an ordeal. One leg had major surgery, the other has cancer and can't do all the heavy lifting. I need a lot of help. I have tray tables bedside, but if one is out of reach, I can't even pull it to me. I can't adjust the thermostat. I can't reach down and get a pillow if one falls just out of range. When I spill the tea I save from my dinner, I have to beg for a new one. I can't adjust the blinds. I can't manage any doors nor any lights except one on a draw string. If one is left on, or the door is left open, I have to bug someone. I know enough that I don't want to be The Pest, and save up requests as best I can. This is very hard for someone who's fiercely independent, been the caregiver - and now needs to ask for and accept help.
The RNs are mostly great. They make an occasional mistake with meds - nothing critical, but noticed and I do correct them. They come quickly with pain meds, check in if I haven't requested pain med to make sure I'm okay, etc. I like them. I refused a couple orders from the doc for the facility, and when I met her explained why. She said she was glad I had, and was going to read my chart as I had suggested via the RN that she do. Returning to self advocacy!
The CNAs are sweet and well-meaning, but I know behind the scenes they are a bit overworked. I joke with them, make them laugh, offer a lot of praise, express gratitude continually, do everything in my power to be a good patient so when I do want something they will be responsive. I know from experience how they play favorites, not because they are malign, but because they are human.
Tonight, one of the 2 male CNAs came back after a couple day vacation. He's the one who went on and on about how his patients are like his parents. Every woman represents his Mom, every man his Dad - and he treats us the way he would his parents.
Well, tonight he must be having a heavy work load. He came in, was impatient as I struggled to get into the wheelchair for a bathroom visit. He nearly ran my surgical leg into the wall (I managed to squeal and protect it), took so long to return to get me off the john that my leg began really hurting and needing to be horizontal stat. When I finally got back into bed, he started to take off but I asked for more help: to move the walker I use to get out of bed and pivot into the wheelchair out of the way. Then, to pull the tray table back to me so I have access to my things. My world is so small now, my tray table holds everything in it. He does that, and I struggle to figure out how to arrange the covers back on my legs. As if not wanting to notice, he doesn't, and takes off again. I call him back - to please help cover my legs. He does, then dashes again. I yell out after him to please close my door and turn off the bathroom light. He does without acknowledging the request.
Then, for the first time in weeks, I burst into tears. I'm not crying because of my cancer, but because I am so vulnerable, and those little struggles, cobbled together make up so much of my day. Those struggles represent mere moments for them. So easily solved. And for someone not to notice, and be too hurried to attend to them with grace is a pile-on that breaks me. That line is so thin now.
I think about all this. And how I have my faculties, can exercise patience when needed, can banter and except for being bed-ridden can be an almost-peer age wise - okay, not peer, but younger than their average bear!
I save the tea from my daily dinner to enjoy overnight. It's my unsweetened dessert. Tonight, I reached for my iPad and knocked over the full glass. It went on the floor, after drowning one of my home bed pillows I was resting my arm on, along with the new pillowcase a friend had brought. I buzz for help. The guy comes, says it will be cleaned up in the AM (this SN actually has carpeting!), what do I want him to do? I ask for another of my pillow cases from the drawer, and would it be possible to get another glass of tea please? He seems a bit put out, as if this is the request of a princess, complies with the pillow case by tossing it, and leaves.
Close to an hour goes by and I don't dare ask again for tea. I do need to go to the bathroom again, and one of my favorite Philipino CNAs comes - she calls me the 'pillow lady' and always smiles warmly - and so I ask if it would be possible to get tea, if not I understand - and she takes the huge sippy-cup I have from home and returns it filled within minutes. I'm feeling warm and cared for again, and tell her she's my favorite! How little it takes.
This continuing care place costs >1 million to buy into, and nothing goes to one's estate (just like Mom's place, but hers was not this pricey!) Maintenance is about 5-6K/month. Skilled Nursing is $520/day. All rooms are private w/ private bath. It was built by the corporation that builds the Hyatts. And - even here there are not fewer mistakes or CNAs who are not rushed. It is =exactly= like Mom's place.
What is different, is that I am now on the other side.
And these posts highlight what I honestly don't understand. The cost of assisted living is astronomical. My good friend moved her father from NJ to GA to save $40,000/per year, and was still presented with a bill for $140,000. Who is getting wealthy off of this demographic? Not the actual staff, that's for sure.
Moon, I can't imagine being in your place. It's truly heartbreaking to read.
I sent this to my dementia group last month when I was in Skilled Nursing for rehab from surgery. I had cared for my Mom (Alzheimer's) both at home and at a CCRC that she had bought into. Her place was not cheap; mine was outrageously expensive. The base rate was $520/day, but I was billed >1K/day once medications and everything one can imagine were added on.
The care was generally excellent, but I was there with many advantages: cognition, ability to stay on top of errors, short-term stay, did I mention cognition? Even so, I was extremely vulnerable, and got a glimpse from the other side:
===========
Nothing like being on the other side of the fence to truly understand what our loved ones go through, or the potential.
I cared for Mom both at home for several years, and while she was in her continuing care facility. She was in Assisted Living, having been kept there past when she should have been technically, because I was at her side to pick up the extra burden on the CNAs and keep her out of Skilled Nursing which was much more isolating.
Some weeks ago, I learned I have cancer. Not a good cancer. At the first visit with my Stanford doc he admitted me on the spot and did emergency surgery the next night to keep my leg from collapsing. I was in Stanford University Hospital for about a week, getting the most spectacular care one could dream of. All my life I've been a manager of things, health, etc, and for the first time ever I felt I could let go. It was amazing. I've dozens of remarkable stories of that time. I marvel at the miles by which they exceeded my expectations.
So, when I was transferred to the best continuing care facility in the area for rehab (into Skilled Nursing), I was sailing on that high. Then, bit by bit I started seeing some mistakes. Gradually I returned to having to manage my own care. Fair enough, this is a nursing home after all, but had I ever been spoiled! I've been here a week and will remain for some weeks more at least.
I'm not able to walk. Neither leg is functional so I need a wheelchair to get to the potty. It's an ordeal. One leg had major surgery, the other has cancer and can't do all the heavy lifting. I need a lot of help. I have tray tables bedside, but if one is out of reach, I can't even pull it to me. I can't adjust the thermostat. I can't reach down and get a pillow if one falls just out of range. When I spill the tea I save from my dinner, I have to beg for a new one. I can't adjust the blinds. I can't manage any doors nor any lights except one on a draw string. If one is left on, or the door is left open, I have to bug someone. I know enough that I don't want to be The Pest, and save up requests as best I can. This is very hard for someone who's fiercely independent, been the caregiver - and now needs to ask for and accept help.
The RNs are mostly great. They make an occasional mistake with meds - nothing critical, but noticed and I do correct them. They come quickly with pain meds, check in if I haven't requested pain med to make sure I'm okay, etc. I like them. I refused a couple orders from the doc for the facility, and when I met her explained why. She said she was glad I had, and was going to read my chart as I had suggested via the RN that she do. Returning to self advocacy!
The CNAs are sweet and well-meaning, but I know behind the scenes they are a bit overworked. I joke with them, make them laugh, offer a lot of praise, express gratitude continually, do everything in my power to be a good patient so when I do want something they will be responsive. I know from experience how they play favorites, not because they are malign, but because they are human.
Tonight, one of the 2 male CNAs came back after a couple day vacation. He's the one who went on and on about how his patients are like his parents. Every woman represents his Mom, every man his Dad - and he treats us the way he would his parents.
Well, tonight he must be having a heavy work load. He came in, was impatient as I struggled to get into the wheelchair for a bathroom visit. He nearly ran my surgical leg into the wall (I managed to squeal and protect it), took so long to return to get me off the john that my leg began really hurting and needing to be horizontal stat. When I finally got back into bed, he started to take off but I asked for more help: to move the walker I use to get out of bed and pivot into the wheelchair out of the way. Then, to pull the tray table back to me so I have access to my things. My world is so small now, my tray table holds everything in it. He does that, and I struggle to figure out how to arrange the covers back on my legs. As if not wanting to notice, he doesn't, and takes off again. I call him back - to please help cover my legs. He does, then dashes again. I yell out after him to please close my door and turn off the bathroom light. He does without acknowledging the request.
Then, for the first time in weeks, I burst into tears. I'm not crying because of my cancer, but because I am so vulnerable, and those little struggles, cobbled together make up so much of my day. Those struggles represent mere moments for them. So easily solved. And for someone not to notice, and be too hurried to attend to them with grace is a pile-on that breaks me. That line is so thin now.
I think about all this. And how I have my faculties, can exercise patience when needed, can banter and except for being bed-ridden can be an almost-peer age wise - okay, not peer, but younger than their average bear!
I save the tea from my daily dinner to enjoy overnight. It's my unsweetened dessert. Tonight, I reached for my iPad and knocked over the full glass. It went on the floor, after drowning one of my home bed pillows I was resting my arm on, along with the new pillowcase a friend had brought. I buzz for help. The guy comes, says it will be cleaned up in the AM (this SN actually has carpeting!), what do I want him to do? I ask for another of my pillow cases from the drawer, and would it be possible to get another glass of tea please? He seems a bit put out, as if this is the request of a princess, complies with the pillow case by tossing it, and leaves.
Close to an hour goes by and I don't dare ask again for tea. I do need to go to the bathroom again, and one of my favorite Philipino CNAs comes - she calls me the 'pillow lady' and always smiles warmly - and so I ask if it would be possible to get tea, if not I understand - and she takes the huge sippy-cup I have from home and returns it filled within minutes. I'm feeling warm and cared for again, and tell her she's my favorite! How little it takes.
This continuing care place costs >1 million to buy into, and nothing goes to one's estate (just like Mom's place, but hers was not this pricey!) Maintenance is about 5-6K/month. Skilled Nursing is $520/day. All rooms are private w/ private bath. It was built by the corporation that builds the Hyatts. And - even here there are not fewer mistakes or CNAs who are not rushed. It is =exactly= like Mom's place.
What is different, is that I am now on the other side.
Thank you for posting. It was a real eye-opener.
It is striking that in such an expensive SNF/rehab they still make mistakes and are still short-handed (just like the one star facility that my husband stayed in).
Yep....been there, done that. that's why my end-of-life plan is to commit suicide.
Many comments here are about waiting to be assisted to the bathroom. Look, if you get help in 30 min, you're lucky! I've literally begged for help and more than once ended up going on myself. I was even told to quit drinking water so I wouldn't have to go They gave me just a small Dixie cup of water to swallow about 10 pills and I almost choked. I was told they would put a diaper on me because I was going so much. Like as though I had any control over any of this! This happened at various hospitals at various times, so, obviously, its not just one bad experience. BTW, these hospitalizations were due to hip replacement surgery, and spinal fusions. I was forbidden to get out of bed for any reason, including "peeing". Ok, I always thought it was urinate, but nurses insist on calling it "pee", so, guess that's the correct term
IMO, nurses are the laziest whiners of any class of employees. Oh, yes, I know, this will probably spark a dozen replies from nurses complaining how over-worked and underpaid they are. Well, if they're so overworked, its certainly not with me. They never come in the room unless I put on the light, then I have to ring a dozen times, then, when they finally do answer, they complain I'm "always on the light". To lay there with a bursting bladder and arguing with nurses---you just went an hour ago---well, I don't know why I'm going so much, but I do know I need to go, regardless of the reason why!
From the minute they take away the dinner tray until breakfast, no one comes in the room unless you put on the light, then, it takes forever and they are hateful when they do come. IMO, they are lazy, drunk, on drugs, probably not even on the floor or in the building----gotta have their cigs
Last hospitalization, I hired a CNA to be a "sitter". she was just there for me, to assist with the things I couldn't do---like "pee". For a few nights you can get around most anything, but to have that living hell as your end of life----no, I think not.....
The biggest problem is a patient who wants to be left alone. If they decline help, they'll be left alone in soiled clothes and bedsheets until someone decides enough is enough
Residents Bill of Rights has changed all this! This encompasses patients who refuse care, refuse to have their diapers changed, refuse their meds, refuse to be bathed, refuse to stop eating sweets because they have diabetes, refuse to stop smoking due to COPD, it covers everything! And dare you violate a resident's rights today!!! A potential lawsuit!!
Being a CNA, I've run into these patients, while doing my rounds at night, who will even get violent with you if you try and change their diaper, and all I can do is document it. At the end of the shift, after 3 refusals, worrying about a potential bed sore developing, I usually get the supervising nurse involved as a witness to my "forcefully" changing that patient's diaper, and, in some cases, involving another aide to help.
As far as the OP complaining about a call light being one for 30-40 minutes, you should preface this with the ratio of aides to patients, that would be helpful. At night, I'm 1 to 25!
And you do realize there's a 2-hour window in nursing homes. Once we change someone, or address their needs, we have 2 hours before we have to return to that patient, unless it's an emergency.
IMO, nurses are the laziest whiners of any class of employees. Oh, yes, I know, this will probably spark a dozen replies from nurses complaining how over-worked and underpaid they are. Well, if they're so overworked, its certainly not with me. They never come in the room unless I put on the light, then I have to ring a dozen times, then, when they finally do answer, they complain I'm "always on the light". To lay there with a bursting bladder and arguing with nurses---you just went an hour ago---well, I don't know why I'm going so much, but I do know I need to go, regardless of the reason why!
From the minute they take away the dinner tray until breakfast, no one comes in the room unless you put on the light, then, it takes forever and they are hateful when they do come. IMO, they are lazy, drunk, on drugs, probably not even on the floor or in the building----gotta have their cigs:rolleyes
Working as a CNA, for 14 years in a LTC/Rehab facility, I will not argue the fact that nurses are among the laziest of all workers. A better term would be compassion-fatigued. But that doesn't cover all of them, as many went into nursing for the $ and $ only, and thus, there was no compassion to begin with, thus compassion-less!
You'll find compassion fatigue with most health care workers, even receptionists at clinics. And Doctors, in particular.
Gotta have their cigs? After the advent of Smartphones, even the smoking nurses today, can't even pry their eyes away from those Smartphone screens to go outside and have a smoke. Playing Candy Crush is more exciting! It appalls me to see so many of the aides and nurses today spending an inordinate amount of time on their Smartphones, the new drug of the 21st century.
At another facility, near our facility, Smartphone usage had gotten so out of control, they installed security cameras to monitor the nursing staff using their Smartphones during work. One night a security camera caught a CNA on her Smartphone for 2 hours, with call lights on the hall, and where was the supervising nurse? On her Smartphone as well!
The CNA was fired, and the nurse? Suspended for 3 days! They should have fired both of them!
And how to control it? Big question! Some hide out in shower rooms with their phones, or spend some time in a resident's room, or in someone's bathroom.
Smartphones aren't just a problem in health care facilities, it's become an omnipresent problem in any work field, and how to control it????????????????????????????????
My source of laughter the last year in my facility, is when nurse @$20 an hour says: That new CNA ($10 an hour) should be fired. She/he didn't do this, that, this, that during the shift.
Why do I laugh? Their replacements are sometimes worse than the ones that got fired!
So I say to the nurses: Aren't you sorry now we fired that last lazy, inept CNA, who was a tad better than the current inept, lazy CNA? LoL!
A couple of years ago I had a complete abdominal hysterectomy, with many complication (spent 3 days in ICU that I don't remember.) I already use a wheelchair and am not very mobile on my own. They decided to send me to rehab at a nursing care facility until I was strong enough to go home. What a nightmare!
They strapped me into the middle of a van and took off. The sky was black with storms and we headed right into it. The streets were flooded and the driver couldn't get to the facility the usual way. We finally arrived and I was taken to my room. I sat there for a long time waiting for someone to acknowledge my presence. Finally someone came in, quickly made the bed and helped me use the bathroom. They would change my dressing every day, give me my meds, and bring me my meals. They never gave me a shower. I was left mostly alone unless they took me to physical therapy. I think I was there for 4 days, when they were going to hold a meeting with the caregivers and my family to discuss if I was ready to go home. I was so excited!
A couple of hours before the meeting, the actual doctor came in to check on me. My wound had opened up, so they sent me, again strapped into a van, back to my doctor. I needed emergency surgery. I was devastated. An aide wheeled me over to the hospital. I was supposed to have been admitted already, but no one seemed to know anything about it. So I sat there alone waiting. I had finally had enough and started bawling my eyes out. A very kind admission lady came over and took me under her wing, taking care of me until I got to my room. I will never forget her kindness. I ended up with a wound vac for six months, and two more hospitalizations from complications of the wound.
The bottom line of this rather long story is that I experienced, although briefly, what it is like to be in a long term care facility. I hated it, and cried every day. I felt alone, forgotten and sad. I wasn't abused, just ignored, and vulnerable. Even though when I finally got out of there I went into the hospital rather than home, I was beyond glad to leave that place.
And these posts highlight what I honestly don't understand. The cost of assisted living is astronomical. My good friend moved her father from NJ to GA to save $40,000/per year, and was still presented with a bill for $140,000. Who is getting wealthy off of this demographic? Not the actual staff, that's for sure.
For sure. I spoke with the young woman who cleaned my room and bath every day, and she said she makes something like 20K/year, which would be fine in a lower-cost of living place, but we're in one of the most expensive (SF Bay Area) in the country. And - she works for a corporation that offers healthcare and does not have any health insurance for herself and her daughter! She's a single parent.
Quote:
Originally Posted by Mattie
Moon, I can't imagine being in your place. It's truly heartbreaking to read.
Very sweet, thank you. But I'm home, healing, and doing really well. Starting chemo soon and am optimistic that 2016 will be an excellent year!
Looking back, I can't say the whirlwind experience of the last months has been negative. Obviously I preferred not having cancer, but - apart from some minor blips along the way, almost to a person I have seen the best in human nature and of the human spirit.
That part has been particularly refreshing, humbling, and inspirational.
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They gave me just a small Dixie cup of water to swallow about 10 pills and I almost choked. I was told they would put a diaper on me because I was going so much. Like as though I had any control over any of this! This happened at various hospitals at various times, so, obviously, its not just one bad experience. BTW, these hospitalizations were due to hip replacement surgery, and spinal fusions. I was forbidden to get out of bed for any reason, including "peeing". Ok, I always thought it was urinate, but nurses insist on calling it "pee", so, guess that's the correct term
On her Smartphone as well!
