I've written about the following incident in more general terms in a previous post about vigilance of Alzheimer's care homes. I'm now writing about it in more detail after reading recent posts by Karma at JewBu Quest. The problems she writes about and the response that she gets are far too familiar. I've been there. Same thing. Same company. Different facility. It brings back all the frustration and anger that I had at the time I was going through it.
Not providing detail about what happened to mom is not fair to anyone who may be facing the prospect of putting a loved one in a home. When I was a caregiver, the more information I had to work with, the better. Not being specific also let Sunrise Senior Living off the hook. It's time to correct that.
Before getting into what happened, here's a little background on mom to help you understand the situation and the change. Prior to getting sick mom was active, talkative, ate in the main dining room and, while using a walker for balance, walked around the facility daily.
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Here's my Sunrise Senior Living story:
The new director was promoted from coordinator from a nearby facility in the same chain of companies. Right away she seemed intimidated by her position. She tended to make herself pretty scarce. Some of the better staff quit or were forced out and pretty soon there were new staff that were basically unfriendly and didn't care too much about the residents.
With a hands off director and staff with little oversight, things went downhill very quickly.
One day I went to visit mom and could see right away that she was sick - a lot of coughing and congestion. I stopped by to see the nurse on the way out to make sure they'd keep an eye on her. The nurse wasn't aware that mom was sick but said they'd check on her.
The nurse called the next day to say they made an appointment with mom's doctor. I took mom myself and learned she had pneumonia and was dehydrated. The doctors orders were to keep her hydrated and if any changes, take her to urgent care.
I visited again three days later. There wasn't any noticeable change and she was still dehydrated. I trusted that they were following doctors orders and since I didn't hear anything I assumed everything was under control.
Three or four days after that I had a meeting with the new director and the coordinators of both the assisted living and Alzheimer's sections. They admitted that there were care and communication problems but they already had fixes planned and everything would be great.
I came back to visit mom the next day about 2 in the afternoon. I opened mom's door, saw mom and my first thought was that she was dead. She was sitting in her chair, mouth open and dry, lips chapped, vacant look in her eyes and not moving. Didn't even look at me when I walked in. After checking her she also had trouble speaking and breathing. She was too weak to stand. The difference was shocking and obvious.
I lost it after this. I went straight to the directors office and literally yelled at her. Mom got meds every morning and evening, the care managers saw her daily, the promises from the day before and no one lifted a finger to help her. No one called me or her doctor. The nurse said no one said anything to her but I found out they had documented that mom was not eating or drinking. They knew there were changes, they could see that she was getting worse, they had doctors orders and they walked away and did nothing. I took her to urgent care.
A couple days later I stopped by the directors office to see what she had to say. I reminded her that they have a nurse and that help in these situations are what we pay a lot of money for. She made more promises about fixing things. As I was leaving the office, the director said "it's a good thing you visit as often as you do". I wasn't sure what she meant, so I asked her. She said "if you hadn't been here your mother wouldn't have lasted the weekend". Then she chuckled a little bit.
I just turned and left the office before I did something drastic. I truly don't think she understood why I would be so angry.
After all this they still couldn't get their act together. I would get there after dinner was brought to mom's room just to see if they were helping her. The food was always cold by the time they brought it and they would just set it on a table and leave even though they knew mom didn't have the strength to feed herself. They would pick it up later untouched. This would happen repeatedly.
One night they didn't bring anything at all to drink. So much for orders to keep her hydrated. From this point on I went there every day. I couldn't trust them.
I had been concerned about retaliation. Up until this incident, I never threatened them with filing complaints. I just kept after them. But after this, there was nothing to lose.
I called the ombudsman first, she was shocked and said to call the California Department of Social Services and tell them. They came out and investigated (which took all of 15 minutes), and substantiated my claim of neglect.
On the report under "Plan of Corrections", it is blank. A far as I know, Sunrise didn't get in much trouble. Things didn't get any better. Six months later, the director was replaced right around the time mom passed away.
The only things I know that happed after that are they re-rented mom's room and dumped her stuff in another empty room without telling us even though we were paid through the end of the month and they were going to cut staffing levels even further.
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This was not a minor slip-up that got out of control. This was not one person making an isolated mistake. This neglect was not addressed or corrected in a timely manner. This neglect required several people at at levels of the facility (care managers, coordinators and director) to ignore the obvious. This neglect required them to withhold basic care repeatedly. This neglect continued after the problems were brought to their attention.
This is expensive professional Alzheimer's care in a facility that is part of a large, worldwide organization that is generally regarded as one of the better organizations. I think that their generally positive reputation says more about the level of oversight these homes receive than the quality of care that Sunrise provides.
Karma is absolutely right - this is unacceptable. It's time to shine a light on this industry problem. Change won't take place until people become aware and we let it be known that we demand better and our loved ones deserve better.
Keith--You and Karma are doing us all a service by sharing your experiences. My Mom is on the verge of moving and I am taking your words to heart. What an ordeal for you all! Thank you for this post.
Posted by: Deb Peterson | September 04, 2006 at 12:53 PM
Wow, thank you so much for posting this. I think that yours is a very important story for people to hear, at least it was for me. Sunrise has such an angelic name; people really need to know that even at the "best" place, things like this go on. I think talking about it and naming Sunrise specifically as you do is really an important step in bringing about change. Good for you!
Posted by: Karma | September 05, 2006 at 01:07 PM
After reading the posts by Karma over the past week, some ghosts started rattling their chains and I thought I may as well post this idea I had when I struggled unsuccessfully with my father's care in a nursing home. What Karma and others write about is systemic, it's everywhere. With a problem this universal, it's going to take huge sweeping legislation to change institutional care for the elderly and give our parents a decent night's sleep. Anyway, here's my idea, for what it's worth.
DO WE DARE LOOK AT THE ELDERLY IN NURSING HOMES?
How do we address the care of our elders, before they die but after they've lost their independence?
One things for certain, we'll all have close personal knowledge at some point with death. We'll experience it in as many different ways as there are people on the planet. But before death comes, many of us will be cared for in nursing homes as our elders are today. What is that like? How little we know and how much we need to learn - now! - while we have the time and the opportunity to get it right! For instance, how many of us can answer the following questions?
How does it feel to not sleep beside your spouse?
How does it feel to be unable to communicate your needs?
How does it feel to be dressed and undressed by a stranger?
How does it feel to be fed, not when you're hungry, but when it's "time"?
How does it feel to be fed what you don't like to eat?
How does it feel to not drink when you're thirsty?
How does it feel to be really thirsty, offered water through a straw you don't remember how to use, and have the water taken away because you're "notthirsty"?
How does it feel to need to use the bathroom but have to use a diaper?
How does it feel to wait for a stranger to come in and change your soiled diaper?
How does it feel when you have to wait for hours?
How does it feel to wait overnight?
How does it feel to holler for help and be ignored?
How does it feel when you can't bathe yourself but have to wait for your twice weekly bath by a stranger?
How does it feel to want to hug your child but you can't move.
How does it feel to cry and be ignored?
How does it feel to be hollered at to believe in Jesus when you're Jewish?
How does it feel to be cold and not pull your blanket up but instead have to wait for someone to notice, in the middle of the night?
How does it feel to be placed in a wheelchair for hours in a room full of strangers in wheelchairs with no music, no sound other than the CNA talking on her cell phone?
How does it feel to never go outside in the fresh air and sunshine?
How does it feel to know you won't get past the front door until you die?
How does it feel to be talked about as if you weren't in the room?
How does it feel to know you're spending down your life's savings to pay for this care?
How does it feel to not get your teeth brushed for weeks?
How does it feel to have your skin tear when you're pulled?
How does it feel to not move and develop bed sores?
How does it feel to not have them heal because you're only bathed twice a week?
How does it feel to have them spread?
How does it feel for your children to not see them because they're on your bottom, under your diaper, under your clothes?
How does it feel to hear the nursing home won't install web cams because they want to protect the privacy of their employees?
How does it feel to be old, incontinent, with Alzheimer's, in a nursing home in America?
These are all ordinary, everyday situations that our parents in nursing homes all over our country face on a daily basis. Don't believe me? Ask around - you'll hear the same heartbreaking stories coming from all over the United States. Ask your legislators if they know what's going on. And if they're shocked ask them if they would dare do something about it.
THE DARE
I have an idea but I need 12 brave legislators to take a leave of absence from their posts for one week. Preferably the ones who have campaigned as strong advocates for the elderly. And since Florida leads the country in aging, that would be a great place to "host" this event.
I propose they take up residence on one floor of a hotel, set up to follow ordinary nursing home procedure. This will be there "pod." Theyagree to be diapered, and unable to walk, bathe or feed themselves for one week. They rely soley on one statistically-average aide - no education other than CNA certification, unverified background check, questionable documentation, no experience - to do all of their care. This aide will make only $8 per hour. There will be one aide only - reflective of the acceptable staffing ratio in most nursing homes - 1 CNA to provide ALL the care for 12 residents.
These "residents" must not talk, they must not move, they must not read, they must not verbally or physically communicate, they must not do anything but lie there. They can moan, they can cry out, they can grab the hand of someone walking by, but they can't articulate their needs, no matter how dire.
They can't propel their own wheelchairs, they can't lift themselves up, they can't roll over in bed, they can't get water when they're thirsty, they can't get aspirin when they have a headache, they can't use the phone, they can't go outside in the sunshine and fresh air, they can't do anything for themselves. They can do absolutely nothing.
They have to exist as the patients of nursing homes exist, entirely dependent upon others for their care.
DARING TO CARE
When the week is over, we'll have the information we need to address the nursing home system as it exists today. Maybe it will be great, maybe it will be awful but either way these 12 elected officials will know first hand what they're legislating about, care of the elderly. If everything is fine, we won't have to change a thing. If everything needs to be overhauled, these brave 12 can lead the way for the rest of us who just don't know what it is we're in for.
I believe that experience will change the laws in the state of Florida within one week. And if this one-week experiment is conducted nation wide, it will transform the way we care for our elderly.
The men and women who swear to lead us, to govern us, to protect us, should know first hand that the golden years have turned to lead in our country. The men and women who campaign tirelessly to attain their elected office should be willing to give us this one week, just seven days, to see firsthand how shamefully the nursing home system, as it's structuredtoday, is failing our elders.
Without that knowledge, how can they honestly say they know of what theylegislate? WITH that knowledge, they'll have the power to pass the mostsweeping legislation in our history.
Our mothers, fathers, aunts, uncles, ARE these elderly people. For once and for all, 12 legislators can transform this haywire nursing home industry by participating in this challenge. All they'll have to do is nothing. When has it ever been possible to accomplish so much by daring to do nothing.
Thank you for your consideration.
Sincerely,
Patty Doherty
PS. Oh, and one more thing, these 12 legislators will have to pay $1500 each for their care - the average cost of one week of average care in an average nursing home for an average Alzheimer's resident.
Posted by: Patty Doherty | September 08, 2006 at 09:07 PM
When I look over this again, it makes me feel better knowing that I'm not the only one having to go through stuff like this. But, it also scares the hell out of me that I'm not the only one.
Posted by: Karma | September 14, 2006 at 09:24 PM