This is my second open letter. You can read the first here.
So I sent that letter telling of my Mother’s plight (and mine) as an attempt to raise a warning flag, and focus awareness in an area of what I will call ‘aftercare’. There is a black hole into where this issue falls, never to be heard from again, because caregivers and resources are exhausted, and depleted. The caregivers are just glad it’s over. They are also suffering from their own lack of care and must focus on healing themselves, both physically and mentally. The resources, and I mean the nursing homes, associations, and healthcare system are so over booked they cannot stop and think about what is wrong and attempt to create change. Everywhere I turn it’s like they have never dealt with Alzheimer’s disease before. Or, they’ve never heard of this policy or request for documentation.
I also wanted to see who would respond to my letter, and who did not. I’m naming names and naming agencies that are helpful and those who are sorely lacking. If you’ve read anything you know this disease is increasing at an alarming rate and our healthcare system is not prepared for it. Even now without the home caregivers, the system would be overwhelmed and collapse. So you want to ignore the problem and hope it goes away? I won’t let you.
I’ve read the books (Frank Broyles’ being the best), and attended the meetings, and support groups and gone to all the agencies for help and information (The Caring Place in Hot Springs is the best). I know more about Alzheimer’s than I can stomach. I can tell you from someone who is in the middle of the end that I was not prepared for the carelessness, lack of accountability, unethical practices, ignorance, and outright mistakes on the part of the people in charge of even basic needs and requests. It is rare to find anyone who is caring and helpful. The process of, day to day care, health insurance, retirement benefits, prescriptions, Medicaid and other applications, and medical care handled is truly an impossible task. I have been blocked at every stage by policies, incompetence, and paperwork. I have to prove this or prove that. Or, they expect that I am lying, so they aren’t even attempting to help. Some questions are so un-thought out that it doesn’t apply to Alzheimer’s. But you still have to jump through that hoop. It doesn’t make sense, and sure isn’t logical to consider Alzheimer’s care and issues simple, and be callous towards the caregiver or the victim of the disease.
I was also not prepared for the ‘minimal care’ given to patients on Medicaid or even private pay, in nursing homes with ‘memory care’ units. My job for the last 3 years was to take care of my Mother. I had to learn pretty quickly what Alzheimer’s was and what could be done about it. I kept all her doctor’s informed and tried to keep her informed, on track with their advice, healthy and somewhat happy. We had a 3 year plan. The first 6 months were great. She improved dramatically. She went from a weak and bent over ‘old crone’ to a happy, healthy, tall and vibrant senior citizen. Then one of her doctor’s made an off-hand remark about her improvement, stating that she ‘could live another 10 years’. She went to bed and didn’t get out for 2 months. She didn’t want to live with this disease for 10 more years. She got more depressed and gave up. Her reaction threw me for a loop. I had worked hard to get her to a decent level of health and she just quit. I know it’s her right, but I struggled with this and still do. I was angry for 6 months and needed assistance for my own healthcare.
All along this doctor allowed time for me to talk, for which I am forever grateful. He helped me get through my issues with this situation. I’ve had counseling before when my parents were divorcing, and knew the benefits. Like I said, I’ve read the books and knew where this was going. There is no happy ending here. But my job was to take care of my Mother and I took that very seriously. I asked questions and when I didn’t like the answer, or the care she was given, I demanded better. And I got it. Until the end.
Then it went downhill from there. CVS Caremark Pharmacy, who handles AT&T’s Employee Retirement Prescription Benefits, flat out accused me of lying and made me feel like a criminal for asking for her necessary pain and Alzheimer’s meds be filled on a timely basis. Her primary care physician, whom she has had for decades, started working with another company (Renaissance Healthcare in Little Rock) and even though her PCP was great, and the remodeled clinic nice, their attention and care of my Mother was not. Their care and attention was cold and callous, and their excuses, lame.
Not to say I did everything right, either. I argued with my Mother and her healthcare providers about her situation, all along trying to make it better for her. I tried to keep her healthy. I repeated to her over and over ‘stay as healthy as you can now, for as long as you can, because the alternative will be long and painful’. I don’t think she believed me. We had a 3 year plan. That’s what she wanted. Knowing about the Medicaid application process coming in the future, her care providers and I made this plan so she would be ready when the time came for long term nursing home care.
The time came knocking last fall. She got a really bad UTI and noticeably more disoriented and confused. That’s what a UTI does to senior citizens. I didn’t know that. I took her to the emergency room. They were supposed to help her. What they did was give her an antibiotic that is known to make senior citizens ‘crazy’. They asked me if she was sensitive to antibiotics. I didn’t know, but usually not. She was to this one. Even more than before with just the UTI, she was out of her mind. So now my Mother has 3 strikes against her brain: Alzheimer’s, a UTI, and an antibiotic, all working against her. That was a Friday overnight. Her confusion and disorientation did not improve. At 6AM on Sunday morning I saw that she was in the bathroom with the door closed which is not unusual. At 7AM she was still in there, so I knocked on the door. I found her naked from the waist down, clinging to the sink, in a very hot room, and totally out of her mind. I don’t know how long she was in there, but I got her dressed, and out of the hot bathroom. I gave her the morning pills and made breakfast as usual at the kitchen table. She couldn’t find her mouth with the fork.
I dialed 911. They came. They helped with advice. We put her to bed. An hour later when she needed to go to the bathroom, it started all over. More confusion and disorientation. She couldn’t figure out how to go to the bathroom. I called 911 and this time we took her to the emergency room. She was in the hospital 4 days. Then, because she was going to be discharged, I demanded extended care for her and not at home. She went to a wonderful place (Lake Hamilton Health and Rehab) 5 minutes from our home. She was there 6 weeks or more. She had a semi-private room without a roommate right next to the nurse’s station so they could hear and watch her. She had alarms on her bed and wheelchair.
I was there every day. Visiting her, helping her walk, eating a meal with her ($5). She had physical therapy, speech therapy, and occupational therapy almost every day. I brought a big cake on her birthday and everyone, including the staff, got some. She got her hair done there every week, just like always. All along Medicare and her insurance was taking care of all the bills. We also had membership in the ambulance service. I have since gotten bills from all three places: Mercy Hospital, Lifenet Ambulance, and LH Health and Rehab. I was surprised by the bill from the ambulance service. What does paid membership mean exactly? I thought it was insurance for when we needed it. I was surprised by the bill from LH Health and Rehab, too. I was told her Medicare and insurance would pay for the first 90 days 100%.
Again she improved. They took the alarms off her bed and wheelchair. She was using the walker on her own and getting around more. Then they took the walker away from her, and put the alarms back on the bed and wheelchair. Why? I’m still not clear on that. Then she stopped getting better. She ‘plateaued’ as they called it. Not getting better, but not getting worse. So they said they would re-evaluate her in a week and possibly release her a week after that. And that’s what they did. I had to find a nursing home that would take her in a memory care unit. I had 2 choices and flipped a coin. One was slightly ahead because the woman who does my Mother’s hair has two relatives in there. That’s when the real nightmare began.
Admission to Village Springs went smoothly, as I’ve done that before recently with LHHR. I signed a bunch of papers and got her in there. It sounded good enough what she said they did in the memory care unit. I paid for the partial month with the understanding I would be applying for Medicaid for her. We also took her month’s pills to be used from LHHR. Over $13,000 later I am waiting for it to get better. I wish they were as good at taking care of my mother as they are at getting their money. They do that really well. They want their money, regardless of the service, or lack of service. And they add late fees, just like a loan shark. The first problems I had were so alarming I had a meeting with the administrator, head of laundry, head of nursing, and one of her attendants on November 17. The issues in a short list were:
1. Security
I explained our family’s difficult situation and signed a privacy note, not to relate any information about mom being there. They were careless and let that information out to the first person calling about her. Their excuse was ‘it was a new employee’. Think about that for a second. In that statement, they are admitting staff turnovers, poor training, careless staff, and poor management. In the medical fields, privacy issues are just like in the hotel industry, which I am very familiar with. You don’t tell anyone, in person, or on the phone who is there or what their situation is.
2. Clothing missing, not labeled, and wearing other people’s clothes
The first time I saw her wearing other people’s clothes, I freaked. I was told her clothes would be labeled by staff if they weren’t already labeled. Nobody checked. What she was wearing was clearly labeled as someone else’s. When I went to the laundry, it was a mess of disorganization. I couldn’t get through all the hanging items stacked 2 deep to try and find her clothes. During the meeting they found some of her missing clothes. I was told not to leave anything of value with her. The $20 she kept in her purse, in a coin purse, was taken. Along with her perfume.
One hearing aid disappeared and the staff didn’t even know. This was after I found her hearing aids put in backwards, and talked to the administrator. He made a note and put it above her bed. Then the hearing aid case disappeared. And finally the other one disappeared. They blamed mom. So they don’t help her with them, and don’t check the trash before they dump it? Really? Some residents spend their whole day wandering into other rooms and going through other people’s stuff. These are medically necessary items. The last time I met with the former administrator he offered to replace her hearing aids.
3. Dog is not a therapy dog
The dog was afraid of me and mom, and barking and cowering. Every time. Even to the point of barking at me in the front lobby. A scared dog is a dangerous dog. Who set this up? The dog is no longer there.
4. Activities for residents
I don’t see much going on for them to do. The attendants spend their time with minimal care and not helping them maintain the best health possible. I don’t blame the staff first, I blame the management. Understaffed, overworked, over stressed, the staff barely take care of basic care. In my mother’s case she still walks around with other people’s clothes on, bad teeth cleaning, and a full colostomy bag. How fast would you decline if you had this happened to you? If this was how you were taken care of, how would you feel? It’s not like she can come home. She can’t even go to the bathroom on her own, anymore. Her sleep habits are also affected, as is expected, by Alzheimer’s. The most activity she gets is pacing the hallway, and because of that she is labeled ‘a wanderer’. What else is she supposed to do? That’s all she can do by herself. I know her. She is trying to hang on with all she has left.
5. Dining room is an unorganized, difficult to maneuver around, mess
I explained how it should be set up. They moved the tables apart, and keep the food carts out of the room, now. It still needs improvement to be more efficient.
6. Back porch and outside space is poorly maintained
Indoor furniture and chairs were everywhere. Nightstand drawers were on the table for weeks. Old décor still displayed. Dog poop in the grass. Weeds everywhere. I can say the new administrator offered that his wife and I can redo that area in the Spring.
7. And last but not least: I have yet to meet the Doctor in charge
We’ve had appointments, ‘he’s in the building’, but nothing. I met the nurse once, but not the doctor. Makes me worry about her medical care. It’s been months…..
So I worry about her day to day care, her long term care, and what happens after that. I worry about me too. It’s just too much for me to handle. Bills are piling up, insurance issues, and I worry about getting a job that pays all the bills, that will take me away from here. How can I take care of her when I can’t take care of myself? How can I take care of her, and take care of myself at the same time? People and organizations say ‘being a caregiver is the best gift’. I disagree. It’s the worst gift.
Phil Chwalinski
Son, and caregiver
One of the reasons for poor and even horrible care is the fact that CNAs are addicted to the internet and can’t break free from their phones. I never had my phone on during work but almost everyone else did. Call lights would be going off. One man with ALS who couldn’t move from the neck down was ignored for an hour while three CNAs sat in the nurses station chatting or on their phones. The nurse asked them to get up and help but she was ignored. Managers would walk by and not say a thing.
I called the state when it became clear that no improvements were being made even after I had told the executive director what was going on. Her idea was to have “pep squads” and go out singing happy birthday to staff and crap like that. Supposedly if they “felt better” they’d do a better job. But asking people to DO their job? Enforcing a “no phone” policy? It didn’t happen and people continued to be neglected.
I resigned after becoming emotionally attached to the resident with ALS. It got to the point where he couldn’t speak and I didn’t want to leave him at all as the majority of the staff said outright that they hated him and would even ask others to care for him offering to pay them money on the side. He died a few days later. I don’t know if I want to continue in this business if companies are going to allow this sort of thing to happen. It’s rampant, this phone addiction. A full staff and still bad service because of the poor leadership and allowing laziness without consequence?. Unacceptable.
Phil,
I can certainly empathize with you. i am an RN who works on a busy floor that has several residents with dementia, some with Alzheimer’s (a few in the end-stages on Hospice). I also took care of my mother who suffered for almost 10 years with at first a diagnosis of Cognitive Impairment for the first 3 years at which time the neuro-psychiatrist wasn’t sure if it was from her history of Depression, or if it was Alzheimer’s. Eventually, just like your mom, mine got worse with a UTI, and additionally mine had a small stroke which turned out to be the incident where she started to become more confused and unable to talk. After that, I could no longer take care of her by myself at home. We decided to put her into an assisted living which was out of pocket only and cost her hundreds of thousands. She has a large estate so she could afford it. Still, the care was poor. If I didn’t come in each evening to feed her, they wouldn’t do it because shew was in an assisted living, not a nursing home. She would be considered skilled and would have to be sent out to a nursing home. We are suing them now because they tried to cover it up. I won’t go any further and disappoint you…
Good luck with your Mom,
Sara Maroto
Unless you had it in writing. a assisted living doesnot do skilled nursing. I cannot see what you are sueing for.
Thank you for sharing, Phil. I’m working on a white paper for the government and our health care industry, based on what I learned/am learning from caring for my parents over the past five years, both with Alzheimer’s/dementia. My mother has since passed, but my anger at her treatment is still very much alive. I keep a blog at https:/unforgettable.live if you’re interested. It seems to me we need to collaborate more, us family caregivers, to get the decision-makers to act on a mountain of anecdotal evidence that is still not getting heard, or is being pushed aside.
What is a white paper? I’d like to see changes made as well but don’t know how to get started. I started a petition but that’s it. I want to do more.
My husband and I have been married for three years and we have three kids. I was pregnant and devastated with our fourth child when I found out about his secret affair, I discovered he was always hiding his phone from me, staying out night outside, as a pregnant woman, i need his attention and care, he made me feel less of a woman when i needed him the most, my condition got worst every day by day, i could not help it but find who will take me out of my miserable condition, i contact dr_mack@yahoo. com to save my marriage, after 3 days my marriage was saved from disaster.
Phil, be aware that there are malicious links posted in the comments field of many blogs. Anyone who pipes up with a strange comment or wonderful recovery story, then refers you to a weblink or email address, is part of a scam. Please delete or redact the comment posted referring your readers to some supposed doctor’s yahoo email address. As a fraud investigator I would happily bet $1,000 that this link is scam-related. And thanks for sharing your nursing home stories.
Thanks for the head’s up on this issue.
your lucky. I married the love of my life, we had 7 sons, the first one died at birth, the others I stayed home with and did all that I could to make them understand that I loved them so much. first one died at the age of 30 he was in the air force, put himself through college in Montana and then joined the army,he died in a car crash in Germany. the second one died a few years later from strep throat which went into his brain, he left a wife and two sons now grown up. All the time we were married 25 years he was cheating. when I found out I said no way will I stay married to you. those remaining sons love me so much. he moved to Montana to avoid child support. but they caught up with him. I never cheated on him or the next man I married who was also a run around, when I married him I loved him but he also wanted to stay with me and still run around.I said NO WAY
then I married a man who was kind but who had copd. we were married for 25 years, he died last year. Now I am with a redneck who had been married for 56 years and his wife, the only woman in his life died also last year, but we are both old. I love him but his one son has been paralyzed for about 21 years and lives at home, another son had a heart problem and is really quite a problem. that is another long story. My father lived with my first husband and I and the boys for about 10 years after my mother died from an ear operation to make her hear better. it was an in and out operation, she had a blood infection which the hospital in Utah failed to find before the operation. Her temperature went to 107 the night she came home. Life is short, love and be loved but understand that someday we all will be gone. Just be happy. I am 76 now and have no one to rely on except one of my sons, but you know that sons are not as easily relied on as girls are. I had none. My boy friend is 78. He too never had a girl. I love him, but I also know that he is not as healthy as he thinks he is. I still work as a title searcher which I have done since my last son born when I was 38. when my son went to school I then learned to search. My quote has always been “I can do anything through Christ who strengthens me ” I smile every day!!! Thank you God
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This is the truth, from my experience.
I have seen elder abuse and neglect, i want it to be my mission and purpose in life to weed out the bad seeds. If staff knows that you aren’t watching, they get lax on their duties. But if they know they are watched like a hawk, they have no other choice than to step up their game. Unfortunately, when you aren’t around that worries me. I may not make friends with them, but our loved ones life still deserves respect regardless of their condition.
I can fully relate to this story. My mom has passed, but the facility she was in is adding more residents, and cutting staff….that means cut in care. residents sit for hours in wet diapers, some sleep In Wet bedding because staff has not changed the urine soaked sheets. Staff are put out if they have to sit and help feed a resident who can’t feed themselves, which results in some residents going without food. meds are not given properly or not given at all. Laundry basket overflowing with dirty clothing, and linens. Lack of activities, residents are left sitting alone, while staff sits at a table chit chatting among themselves, checking their phones. People who are called “upper management” not doing their job getting their staff to actually work…they turn their cheek also…..make excuses for them. It is really sad, and NOT the way it should be.
My mother in law worked for years in a convalescent hospital. She was great with her little patients. She thought of each person as family. She would come home after work and be so down emotionally because of the way other CNA’s treated the patients… she told all of us, if she ever got to the point that she needed assisted care and we put her in a convalescent hospital she would haunt us all, after she died… she said their are some great workers and then there’s one that you wouldn’t want anywhere near your family members.
So check out the facility you take your loved one to. Not to scare you. But you never know what is truly happening. ✝
Nursing homes are hell on earth for residents
There are caregivers that do care deeply. They sit after hours with residents they know are lonely, they come in on days off to be with their residents who are dying as they know the on duty staff can not. They make sure moms hair is done, dads teeth are brushed and Mrs. Smith has her favourite pink wool bed socks on at night because her feet are always cold. They have been called up ” on the carpet” more times that you or I could count because they dared to challenge management, They took the time to learn your entire families names. They went home exhausted and cried for your mom or your dad in to their pillows so many times. They insisted that activation include your loved one in activities, even though through no fault of your loved one, they may be disruptive and harder to manage. Doesn’t matter- they have fought for their right to be included. They have spent their pay purchasing razors, socks, pyjamas, music cd’s, and goodies for residents who have no one. No family at all, or worse, family that has forgotten there is someone who needs them now more than ever. They have seen you leave with tears in your eyes, and they know that dealing with Alzheimer’s is a grieving process often without closure. They know it hurts, they know it makes you angry, and they are hurt and angry with you yet they can not show it. The staff turnover is high, professional caregivers burn out quickly because it is so frustrating and heart breaking walking in to a system that treats human beings like a factory assembly line and expects you to do the same .Especially knowing that somewhere down the line it could be them, it could be their mom, their father, or even their child .It is down right rage inducing that management cares more for that paper work and their corporate image than they do for the human beings in their care. They want to tell you that the man in the room next door is violent, but they can’t. They just pray that he doesn’t injure anyone in his illness, and they make sure your mom who can not defend herself is always out of his way. They are punched, slapped, bitten, spat on and called names that would make a drunken sailor blush, and all before breakfast. They know it is not personal, they know it is the disease and the frustration and anger that goes along with it. The worst is when they turn on the news and see that a nurse or care giver abused a patient. Nothing makes them angrier because this is a down right betrayal to all of them. It belittles the trust placed in them and hurts all of them. Nothing will make them angrier, sadder and more frustrated. It could have and should have been prevented. They are sorry. So sorry they could not do more. Sorry no one seems to care or listen. Sorry your loved one has had to go through this. Long term care is not like a hospital. No one gets better, and there are few, if any, happy endings.But I will tell you, they will fight for your mom, your dad, and attempt to maintain their dignity at all cost! Even knowing they may as well bang their heads against the walls. You may never see this. You may never know their names, just see a blur of their face as they race by you down the hallway to answer that call bell. That’s okay. Just know that they are on the same team as you are. They are fighting for all the things you are fighting for, and asking all the same questions. Why does no one listen? Why does no one seem to care? Oh but we do care! We really do care!………
Well said xx
Mary,
What a beautiful way to convey the way so many CNA’s really think about the residents in Memory Care everywhere in the world. Like many, I could make more money working almost anywhere but I have a passion for caring for seniors. So many employees really care but go unnoticed. Very well written commentary!
Couldn’t have said it better myself
Thanks for sticking up for us ❤️
It’s a national crisis. There are no resources, no infrastructure. Thankfully my husband is in a good facility that uses the Eden Principles. But in the year that I troured facilities the options quickly narrowed. Some don’t like ambulatory men. They interpret even a raised male voice as aggressive. Some don’t take incontinent. Others do not want wanderers even though sundowning is common. Each defines aggression and mental illness differently so they can refuse admittance or throw someone out at will leaving the family with no options. In the end, there was only one facility within a 50 mile radius that would even take my husband. It is a state run facility for war veterans and he has superior care. The people that work there are paid well, trained well and if the work doesn’t suit them, they’re gone quickly. The facility has strict standards of care. One of the many, many problems is that so many working in this field are suited for and they are also underpaid, often no benefits, and they have no investment or heart for this very difficult job.
You were the angel Maureen as you took care of your mom the most… very proud of you
My family too experienced the downfalls of nursing home care when my mother’s dementia worsened and assisted living was no longer enough for her. Fortunately, I have 8 siblings and we collectively made the decision to care for Mom in a private apartment. I am blessed to have been able to do this for her but unfortunately this is not an option for all families. We had strength in numbers!
What a blessing! There are not many families like this anymore.
I kept my son at home after three strokes. He was diagnosed with dementia and cancer . I kept him at my home until they said it was to much for me but after putting him in a home the treatment he got was a nightmare and I went everyday . My son fell out of bed as he had to go to the washroom and was laying on the floor for over an hour three different times. I fed him except for breakfast plus had to remind the nurses to give him his pain meds. I could go on and on . He was promised to have respite but that never happened. He finally passed away in June of 2015. I phoned long term care and someone went in and checked his files and apologized for the way my son was treated and for the way they treated me. I will never go to a home. It was hard on me as I miss my son so much. He was only 56 years old. Make sure someone goes in everyday to see your loved ones . My son passed away in 2015.
overworked and under-trained staff….
Bottom line, these places are horrible. You can’t pay someone enough to care. Caring comes from the heart, not a wallet and these places are a business. They are out to make money. The pay and train direct staff poorly.
This is exactly why I take care of my mom with Alzheimer’s IN MY HOME with the assistance of caregivers so I can still work.
you still should use a camera when you can’t be there….
My Nana is in a nursing home and either one of my parents or my sister and I go every night to make sure she is eating her dinner. We don’t do it because of lazy staff, we do it because we know she will always say “I’m not hungry” even when she hasn’t eaten all day and by law if they try to make her eat and she refuses they can’t make her at the risk of mandatory reporting for force feeding which is seen as abuse. They then lose their jobs. I also work in a nursing home (different one) so I am able to explain things to my family better.
So familiar. A nurse told me that all memory/ nursing homes are “only as good as the staff.” Gee.
Sounds frighteningly similar.
Your Mom’s story is the exact reason I never left my son’s side after he suffered a severe traumatic brain injury while he was in a coma and then recovering in a Rehabilitation hospital. You just don’t know what is or isnt being done and they can’t tell you what is happening to them if you aren’t there.
As far as hoops to jump through and proving someone’s condition over and over…I fully understand your frustration. I will be doing this for my son for the rest of my life. His condition will not go away, it gets worse and changes. Simple things can Wipe him out too, like an UTI. I guess because it impacted his brain same as Alzheimers does to your Mother.
Hugs and understanding for what you go through~♡~
If you ever have to put your love one in a nursing home, you need to go every day, get to know the names of the employees and let them know that you expect her to be cared for
Broken ankle.
Mary Tyrakowski Bujnowski sue the living crap out of them
My sister is 59 years old and is mentally ill and lives in an ALF in Florida. She’s lived there for almost a year. She has Type II diabetes, and three years ago she had her leg amputated from the mid-calf down. She is single and has no family or friends or support system in Florida. The only family she has is me and her son and we live in Texas. We are both terrified of her because she is both verbally and physically abusive. She refuses to take psych meds. We only talk to her about twice a year. I know that sounds horrible, but we just can’t take it anymore. Ironically, she worked as a psych nurse for over 20 years. Her diabetes got out of control and she quit her job a few years ago. Throughout her lifetime, she has been arrested a few times for verbal abuse in stores and restaurants. She’ll start cussing someone out at the drop of a hat. She punched someone in the face at Disney World one day. Luckily, the lady didn’t press charges.
Recently, she has called me a few times begging me to call the administrator of the facility because she says they are not taking care of her. She has a prosthetic leg and says she can no longer put it on or take it off because she is losing feeling in her right hand and they won’t help her with it. So, since she can’t put it on, she can’t get to the bathroom. They put her in diapers and change them for her, but repeatedly tell her she can do it herself. She has developed a UTI. They also take her to the shower and back. She has refused physical therapy the entire time she has been there. One day she managed to get on her power scooter herself and ride it the few feet to the shower and shower herself. But says she “was stuck” in the shower for seven hours and no one came when she rang the bell repeatedly. She called EMS from the shower. When I asked how she had a phone in the bathroom, she called me a bitch and hung up on me.
She calls me back the next day begging me to call the administrator for her. She said they did a psych counsel and prescribed a psych med for her. She refused to take it. “They are working against me. You have to call them. You sound professional on the phone, they will believe you when you tell them the nurses and techs aren’t taking care of me. And tell them I don’t need psych meds!” Oh, and she said the EMS people agreed with her that no one was taking care of her. But they didn’t take her to a hospital. They just helped her into her bed.
So I break down and call the administrator. She put me on speakerphone because the Director of Nursing happened to be in her office at the time talking about my sister. They said she did call EMS and they didn’t take her anywhere. They said she has been acting out lately and verbally abusing some of the residents and that they will have to discharge her if she continues. In fact, they were thinking of starting the paperwork right then and there. They also say whenever the nurses or techs go into her room, she screams at them saying they aren’t taking care of her. They’re not sure what to do with her. They asked if she had any friends or relatives in the area and I said no, she doesn’t. I told them about her mental health history. She was Baker Acted four times during her hospital stays for her amputation. She is dead broke. She sent all of her retirement money to a church. All she’s had these past few years is Medicaid. Since she quit her job, she lost her insurance.
So my question is this: Do you think the ALF isn’t taking care of her? Or is she just acting out in a cycling paranoia state of mind?
This exact thing happened to a dear friend,i was her caregiver for 3 years, she eventually had to be put in a assisted living Bella Vida Phx AZ. She had been living on her own, but because she kept falling and hurting herself, she was no longer able to care for herself. She was in assisted living for a month, I would go over and buy her snacks and what nots she needed or wanted. Mind you she was there for a month. I started noticing she was incoherent, (remember i took care of her for years) I advised the caregivers and whomever would listen that she had a UTI, for a few weeks I was all over them about this, I had been with contact with her sister who lived in another state that her sister was sick, and to please call this facility, their response was she needed a mental physician, again she was incoherent, she had a bad rash (she used depends). I saw her last on a tuesday when i again begged them to treat her for UTI, finally a caregiver gave her a shower and i left. I got the call from her sister the following morning, they had found my friend unconscious her BP was 50/30 barely alive, when she got to the hospital to ICU, she had already had renal failure,severely dehydrated, C-DIF, Septis, UTI, and a heart attack, she lived in the ICU for 2 weeks, her sister had to come down and pull the plug…I was beside myself, why didnt these people listen ???? why ?????
Action is what causes results. You want to take action? Apply at any long term care facility-elderly, disabled, rehab, nursing homes, adult family homes or day services to name a few. Don’t want to leave your job? Volunteer! There is a shortage of workers, so be a part of the solution and increase the staff base. But please, don’t be surprised that your friend who works at Sam’s Club makes more than you. Sure, you’re expected to empty catheter and colostomy bags, know the side effects of that new medication John just started, work overtime every week, keep all of the clients personal belongings together(Don’t forget-everyone is ‘wandering’ around, unable to remember what belongs to them and what doesn’t), document in all 73847 areas about how your shift went, take on the role of counselor, teacher, cheerleader, dietician, housekeeper…don’t you dare forget to clip everyone’s fingernails, and remain composed, professional and attentive throughout every second of my shift. In my experience, most caregivers love their participants. They feel like family and want nothing more than to make them happy. Making $10 an hour for all of this a personal caregiver and you wonder why the care seems so shitty? Because everyone is burnt out from being so undervalued. Not only that, but the staff pool agencies have to pick from is sparse. The pay is so minimal that the only people applying are the ones who couldn’t get a job somewhere els. Who wouldn’t want to get paid $13 an hour to scan groceries? We love ‘our people’ but the truth is, we screw up too. We forget things. We feel overwhelmed. We have med errors. Coming from a corporate standpoint, we can train people a thousand times and still have someone inject the Epi-Pen upside down.
Having taken care of a loved one, you can understand the support and reassurance staff need. Every single thing you want them to do or know involving your mother is equivalent to the amount of information Jane’s husband wants the staff to know about her.
I too can relate to much of this. It’s terrible how we treat our elderly in this country. The home that my mom is in has slowly gone downhill in the three years she’s been there. Just last week they came in and had her sign a DNR without me (her POA) being there. She has dementia and already has one on file there and at the hospital. When I questioned them about it they said she was “alert and oriented” that day! I asked them if that meant “awake”. It’s really unbelievable the disrespect they have for the residents and their families. We need sweeping changes in elderly care!
So sad, and so true. The people in charge of ‘oversight’ can’t manage the problem, but aren’t raising the red flag to help people, either. It’s simple: get volunteers in there to assist in daily care. Family members, or former caregivers who want to give back. Give family members a stipend’ for their time. Make it possible for them to keep caring for their family members. I had to go back to work….
Pretending to care. Pretending to grieve. Pretending to live.
Hello it’s me. I’m not done yet. Neither is mom.
Her recent hospital visit caused by a very bad UTI where her catheter bag was filling up with what looked like tomato soup (caused by what? Lack of hydration/water?) I got the call at 5am from the nursing home that mom had blood ‘coming out of her vagina’, and was being transported to the hospital. After my early morning shift at my part time job, I was in the emergency room with her and saw it, and took a picture. I was frightened, and she was in a lot of pain. I said ‘she’ a lot that week. Not ‘mom’ but ‘she’. That’s how I coped with it. It took a couple of days to hear from the doctor, and the urologist. By then her catheter bag was looking like cranberry juice. Better? The hospital did a MRI to see inside her bladder. They saw a mass. A tumor they said. I’m back at work when I get that phone call….
I have a new full time job back in the industry I’ve been working in over 25 years and at the same hotel chain I was working for back in California. I am lucky to have this job. I didn’t have to relocate, or commute. I’m also keeping my part time job for a while longer. Re-fill the coffers after not working for 5 years. It was not an option, I had no other choice but to go back to work. More urgent than caregiving for a parent, I had to bring in money to pay bills. January 2016 was tough. How low can you turn down the thermostat so you don’t have a big heating bill? 62 degrees. What cheap food can you eat to survive? Frozen vegetables and canned chicken. Protein bar for breakfast. Skip a few bills. Pay them late, just before they cut you off. Internet got cut off for a week before I could pay that bill. You have to have internet access to apply for a job, to communicate with the outside world. It’s not in person anymore, but all on the internet. Then, and only then, do you get to talk to a real person. If you are lucky. Then you have to go through the in-person interviews. Jump through their hoops. Pretend to be happy. Pretend you are excited about this opportunity. They don’t get it. They don’t know what you are going through as a caregiver for a parent with Alzheimer’s. One of them asked me ‘what mentor have you had that you would like to immolate? Several, I said. A lot of people have helped me along the way. I teared up at that one. Surprised me. Never happened before in an interview. I didn’t get that job. They were looking for a hard ass numbers guy. That’s not me. Not now. Oh, I’m tough, as my new employees have found out, but I’m not focused on being a tough guy.
So when the hospital finally calls me with ‘it’s a tumor’ in her bladder, they give me my options: simple to complex. She has a DNR. First was exploratory surgery where they go in with a camera and cut out the tumor from the bladder wall. If it is past the bladder wall or blocking the tubes from the kidneys, it gets more complicated. If it is outside the bladder wall and metastasized, that’s the end of it. For her. I know what she wants, or doesn’t want, so that’s the option I choose, the simple one. No big surgery. Remember I’m at work at my new job when I have to make this decision. They are very understanding. Surgery will be the next morning on Saturday. I don’t tell mom what’s going on. I keep a brave face, and just hold her hand. Her pain has lessened by then. I spend the night in her room and go home for a shower at 3 am. She’s sound asleep. Even snoring.
In for surgery, which is a cluster fuckup, usually preceded by an hour or 2 before time, they come get you and take you down. Didn’t happen. By 7am, surgery is at 7:15am the hospital staff finally gets their act together, and down we go. It was weird, like nobody knew what they were doing or what the timing was. The guy taking her down, was on the phone, and had to unplug her from the monitors himself. He was not happy. I kept my mouth shut. I had asked at 5am and 6am if she was being transported, and got vague answers. In she went. I went to the waiting room. An hour later the phone rings on the wall. Okay? Is that for me? WTF. I answer it, and yes, it’s for me: she is out of surgery and the doctor will come see you. He does and with a stunned look on his face. He finally gets to the point after a long sentence about ‘how it doesn’t go like this very often’…. The ‘tumor’ was a mass of blood clots and that’s it. He vacuums them out, takes a biopsy of some red spots, and that’s it. Apparently we are both in shock. Or relieved. My niece arrives as this is explained. By the time mom gets back in her room, she is alert and hungry. I go home to get ready for work. Mom stays in for four or five more days and is transported back to the nursing home. I can’t wait to get the bill for this one, caused by a UTI due to lack of hydration/water. I think I’ll give a copy of the bill to the nursing home….
Not done yet… Since she has returned to the nursing home, she is pretty much wheelchair bound, and has to have help getting up and going to the bathroom. She is extremely weak. Her world is getting smaller and smaller. So is her new room. I visit her every other week. This really sucks. But I can’t care for her and care for myself at the same time. I have to live and support myself. No happy ending.
So what do we do my mother was in a nursing home for 7 1/2 years she was only there for rehab. After a hip replacement. She was doing great walking better than me and 60 days into her 99 day rehab something went wrong I received a call one morning telling me my mother could no longer walk. I asked what happen she was walking just fine the night before so what could possibly have happened. I was told we don’t know don’t ask us any questions because we don’t have any answers. Now I’m at work so I demanded they get her to the hospital in case it was a stroke I was told no they were waiting on the doctor that comes to the facility to check her. So 6 days later the doctor shows up. This is when I became very educated In the nursing home game right down to the federal and state laws, regulations, rights . I as well as my husband were labeled as problem family members. Now this is just the first 65 days of what is titled our nursing home hell. It’s sad that we do what we think is right for our loved ones to only be shocked about the lack of compassion and care . So with 7 1/2 years of this hell 875 + photographs of injuries my mother suffered 5 totes of documents medical records and my daily journals I kept of my mother’s care. I have a letter from APS stating my mother was in need of protection from the nursing home. That I received after I brought her home to care for her in her final weeks . Now this letter I received about her need in protection was delivered 2 months after my mom passed away. Forget about all the other times I informed APS the ombudsman corporate,.with no results because point blank they don’t care . So what do we do to change the mentality of our Care for our elders. I’ve wrote local legislation, Congress with no results . It’s time to speak up its time to demand change its time.
I’m so sorry and relating to the hell now!
What you are doing is the best and only solution out there for us. Can’t stay home. Can’t get decent care in a nursing home without constant vigilance. Best wishes….
Phil, I am in a very similar situation sadly. If or daycares were run this way, it would be all over the news and laws would be changed. I” in Minnesota and am fortunate to have a County Ombudsman to answer my questions, guide me on federal regulations, sit in meetings with me and nursing home representatives and give advice. Possibly this is available in your state? I found the ombudsman through the senior linkage line and then the state ombudsman. It is very hard to leave my Mother every day knowing the indifference and sometimes I’ll intent with which she is treated. We would never leave a child in that type of situation; why should we be forced to leave a vulnerable elderly parent? I believe laws need to be changed to ensure adequate staffing, safety and dietery needs are met. We all have a huge interest in this as we are all getting older.
I am so Sorry..I fill your pain..Yes My parents both fell and broke there hips 6 months apart…went to rehab after rehab …I tried to keep them home as long as I could….the calls and organizations that I reached out to was good at talking but never received much help….So I ended up doing exactly what I said I would never do is put them in a nursing home facility…..Its our system ….Insu….Govt….its not there anymore to help…..My parents have been there for 2 years…..I am there every day to make sure they are clean,changed ,etc….I only wished I could bring My parents home…..
This summer has been difficult, even more so, than when Mom was at home. She is in a new facility as of the middle of September (good), I worked full time hours in one job and part time hours in another, (good and bad) and my sister who has not been involved with my Mother’s healthcare petitioned the county court for guardianship (very bad). She did not get it, I did. I will write more soon….
My mom is almost 86, i am almost 68 still working full time, and taking her to a day care that takes medicaid. I am so tired, but need to work. Husband left after 31 yrs of marriage. Mother is tired every morning and does not want to go to caregivers but gets mad when i try to get a sitter. I have her on a nursing home list, but nervous about this. I have fed her good, make sure she gets her meds. And she is better. She has frontal lobe, alzheimers and lost short term memory loss. My sibling will not help me. I am so tired, always late for work. I dont know what to do. My doctor said my mom would live 10 more yrs. I will die in 2. I took that as a joke but fairly sure he is right. I took care of my daughter for 33 years when she was sick…….husband did t even visit her for 10 years but came to her funeral…….when nursing home calls me to take in my mom it will be a hard decision. I could be about 70 by then, dont know if i can keep this up, but want mom to be treated well.
Thank you for telling your story. When people are in our situation, there are no perfect solutions. You need to get help, either in home or in a facility. I had to look outside the county and consider a long commute to visit. even in a new facility as of September, she wants to come home, and I told her it was not safe for her and she would not get the care she needs 24/7. Do not sit quietly, tell your story to everyone, even the ones who don’t want to hear it. Screw them, you need help taking care on your Mom.
Here’s another update for you all. The nursing home has decided to ‘discharge’ my mother on August 10th, if I don’t come up with $13,000 for the past due bill. $10K of which I am appealing for Medicaid to pay. Even though she is fully covered by Medicaid now and in the future, they still will send her home. I have appealed their decision which should buy me some time, and even though the nursing home has to fill out a Medicaid ‘hardship waiver’ they haven’t. Not even mentioned they could…. BTW: Federal law prohibits a nursing home from releasing a resident into an unsafe environment. The nursing home suggested I get a home equity loan to pay the bill. So that would make mom’s bill mine to pay. Every month.
These are the sorts of things that just blindside a caregiver…enough to think and care about the PERSON..the parent or spouse…no…now you are fighting SATAN and his minions. my previous comment timed out, but after mom died and those well meaning friends and associates just wanting me to get over it and get better, aka STFU… people just do not get this level of caregiving. Putting someone in a SFN or assisted living is SUPPOSED to relieve you of cares so you can just visit. Like hell. Those well meaning friends want me to write about bringing joy to my mother, all the wonderful things I did to enrich her life…a HOW TO book…yeah… So I think who would read a book titled “How not to get Arrested”? It was that bad.
Reply timed out. What’s up with that? Some replies are long…. Thank you. Minimum care standards need to be raised for people with Alzheimer’s Disease. That is my platform for 2016.
Sorry about the tech issues! We’ve been trying to figure out what’s causing the timeout, but so far no luck.
Thank you for sharing. Guilt isn’t helpful, to him or you. if you visit that often AND do his laundry, after caring for him 3 years, you are a Saint.
wow…I live in Toronto and this sounds like where my dad is…although he has good care..I go every 2 nights to visit..do his laundry…but I still feel that he’s missing out on some things..I have very severe guilt feelings..I looked after him for 3 years also…
Update: I am trying to get the info on this nursing home and follow up with the Office of Long Term Care. The Freedom of Information Act is all about red tape and ‘not my job’. There seems to be 93 pages floating around somewhere, and maybe somebody will send it to me sometime. For a price, it seems. They will invoice me. And about the Arkansas Office of Long Term Care. They don’t. Not about me, my mom, or the nursing home. Why is that?
I could put my name on this story. Our loved ones and us caregivers deserve better.
Yes, we and they certainly do.
My heart goes out to everybody going through such a difficult time. My mother passed away last August at age 92. She was diagnosed with dementia with lewy bodies for many years before her death. I was her main care-giver, although I wasn’t her Power of Attorney for Health (that title went to a sibling). My mother spent the last 10 months of her life in a long-term care/nursing facility. I saw many of the horrors there that are being described here. I wish I would have read posts like these before going to the nursing home. Although I do live in a small, rural community where the options are very limited … so I’m not sure how much of a choice we would have had with my Mom anyway. In my case, my battle was as much with my 3 siblings as with the nursing home … but maybe that story doesn’t belong here. It’s been 9 months since my mother passed, but I’m far from over mourning … and second guessing myself for the way my mother’s final months unfolded. If only we had a crystal ball, eh?
Thank you to everybody for sharing your stories here. It helps to know that we aren’t alone in what we are going through.
Thank you. Your story does very much belong here. And everywhere! Just like mine. Looking back without looking forward too, is not helpful.
My prayer has always been that senators congressmen all would have to be caregivers for 90 days….and have someone on social security as only income….maybe then we will start seeing a change
I totally agree. Things would change overnight!
WOW, that is incredibly sad & so wrong. There needs to be laws in place for the kind of training the workers need & better pay for the workers. Lord knows with the huge amount of $ you pay each month, they should be able to pay the workers a decent wage. I found many of these issues when my aunt & mom were in a nursing home. Their belongings weren’t safe. Even things with name labels all over them ended up on other people beds or on other people. They were understaffed. When my mother asked for help getting up at night to use the rest room, they put a depends on her. She was humiliated!!!!! She didn’t have a bathroom issue, she only needed help getting to the rest room. It seems like the things our government should be concerned about, they ignore. We need to do more to get better care for our loved ones. Thank you for your story.
Mary Gagnier
Instead of keeping her dignity as long as possible, they humiliated her. Just great. It is wrong on so many levels what happens in nursing homes. Why is that? What is really happening? How will we deal with these issues in the future? That’s what I’m asking the decisions makers I know.
I work for a company that is both long term care and a rehabilitation facility as a CNA. I also take care of my 77 year old mother at home. I have taken care of both of my maternal grandparents until their passing. I was never so shocked in all my life as when I first started working at a facility. I had until 2 years ago always worked in private homes where the care is one on one. The ruling authority in facilities is DEHC. There are many shifts where I have had the max of 13 residents for an 8 hour shift and 20-22 residents for the 11pm-7am shift. There is no way on God’s green earth I can even remotely give anyone quality care with that number of residents in 8 hours. We are always under staffed and many of us work 16 hour shifts. I am always the last person to clock out due to my insane thoughts that 5 more minutes with this one or that one is making a difference. I am know as the one who can calm someone who is screaming, fighting, holding on to anything within reach and refusing to move or be moved from their current location. I have found that people with dementia or Alzheimers need to be redirected and spoken to in a calm manner to regain their trust. The current generation of people we have applying for CNA positions cannot and will not accept the conditions of their profession. It is a constant shift of changing briefs, feeding and trying to bathe residents with care and compassion. I have heard so many times that “I’m just here for a paycheck and I’m not doing anything extra. I have residents who do not want anyone but me to care for them because they know I will take the extra time and effort to do thing s “their way” which is sometimes not the company’s way. It’s hare not to get attached to my residents but it’s part of who I am. I have made may birthday cakes and brought balloons or decorations because some of them have no one. I hope that one day this situation can change and there can be more compassion for our elder generation. I only see policies followed when DEHC is coming or upper management is in the building. It is such a joke watching the way they run around like this is the way things happen everyday, when in reality it’s a struggle to even get the staff members to work together!
I know you and other staff members have a heavy burden to carry. Thank you.
Thank you. I think 24/7 home care for someone with Alzheimer’s would be too disruptive to most families. It’s bad enough already, and for me, the funds are gone and Medicaid is still pending.
Maryanne Harris, have you thought of hiring an in home caregiver? Sometimes it’s less expensive than a “home” They would come in and they could be there 24/7 they would be supervised by you. Sometimes the state will pay for it. Just an Idea. Good luck to you!
Jeanne, I had some in home care when mom was with me. But medicaid only paid for 2 hrs three times a week. I was home so that’s all they would allow. After all the spine surgeries I just couldn’t keep up with the IBS and diarreah every few hours for days at a time. She had to be brought back in the house twice by police (she somehow figured out the locks) because she wouldn’t come back in on her own. Grabbing & pulling on her was not an option. She fell and had 8 staples in her head, hid her meds in her mouth, refused to take them, on and on. But I still want her with me. They (police & doctor) pressured me into a home for her. I’m still trying to get her home. I love her dearly and I know the stress it will be, but she’s part of me, I don’t feel whole. My husband died of cancer five yrs ago (wonderful man) or maybe having him to lean on would have made this easier.
So true !! Thank you I feel i have been heard.
Thank you. I hear you….. So many stories….
Phil, yes I have followed you. The main reason, my story mirrors yours. I am as tough as you when it comes to my mom (92, alzhiemers 12yrs ) I love her intensely, more than myself. The issues I have gone through over time with her caregivers for two years (she’s was with me 11 yrs) disgust me to the core. The difference in my story was mom had a mild stroke, or she would be with me. I cannot help her if she falls. I’ve had six spine surgeries. But I SO want her home. My biggest issue is that these homes are overseen by NO ONE. No surprise checks, no way to get to talk to anyone at the top. How, oh how can our elderly loved be treated as disposable. Man’s inhumanity to man. This is the value of a human life when we grow old and it sickens me. I felt each of your words in my heart and had to reply. The very best to you and your dear mother I pray.
Thank you. The Arkansas Governor’s Advisory Council on Aging told me to band together with other resident family’s because one person can be labeled difficult…. No help at all! I wanted to tell him ‘just you wait and see’!!!
Dear Phil , I am heart broken at this story I to work at a nursing home and yes I’m overworked under paid un appricated except by my residents which I dearly love ! The company is all about the money which saddens me the turn over rate is so high I don’t even try to remember the new ones name . But I could never leave them ( residents) but I can get the company to bend or see what wrong with the way things are going I’m not a nurse but an aid a Medtech a house keeper a shoulder to cry on an ear to listen and I try my hardest to make sure I tuck them all in with a kiss good night because they have become part of my family! I. The facility I work at there is 20 residents to 1 aid it makes it a bit hard to get everything done in a timely manner but hey I try. I wish there was a way to pass a law to have 7 residents to 1 aid to ensure the highest quality of living but I don’t know how to get that started . I will pray for you an your mother! Sorry to ramble but your the only one who seems to get it !
Thank you. I know your story well.
The unfortunate reality is that this is happening everywhere within our healthcare system, not just with dementia patients and not just in nursing homes, but even in hospitals and even within daycares (which are probably worse than any of the above). I am a RN and have been in the nursing field for over 12 years. I have done anything from private care, to working in ALF’s and NH’s, to neuro ICU, to hospice and case management. I have been to multiple facilities on a day to day basis when I case managed and I found everything you wrote about within every single facility. It doesn’t matter the age, the condition, the illness, the location…all these issues are constantly evolving. In searching for daycare options for my kids, I have actually somehow found daycares to be even worse. All of this must change, but with the growing population and growing debilitating diseases, constant health insurance changes, government laws, limited amounts of trained staff and physicians…is it really possible?
Thank you. I believe not only is it possible, that I will help create that change. I am not shutting up. I am not sitting down. I am not going away. I am not stopping.
I work for an assisted living company and when I have clients in a facility I have seen some of what you described. There are some residents that have wondered out the door and no one sees them (I have had to find someone and inform them so they could retrieve them). The company I work for has such a high turnover because people are just not cut out for caring for the elderly but the company itself is not blameless because they accept untrained people yet do not bother to train them and show them what to do in order to be more comfortable in their new role. My first month working for them they tried to get me to agree to work with a client that required a hoyer lift and I refused because I did not know what it was and had no experience lifting so did not want to risk hurting anyone.
Thank you.
My heart goes out to you. I work in a resident care facility. I try my best to make everyday the best day for each resident but sadly if all of us are not on board it doesn’t work as well as it should. Plz know that there are caregivers out there that love each resident as their own grandparents and would move heaven and earth to do the right thing for them. We all burn out and have to take a little vacation, as I will be returning tonight from mine. I wish you only luck and happiness in your life. Kim
Thank you for caring.
Thank you! It does sound like a horror movie. But this is real life…
Amen! You are very right as sad as that is!
Hi Phil,
I worked in a nursing home full time for two years and other nursing homes on an as needed basis since 1997. The last place did me in and I won’t work in one again. I am in counseling and need medication to stop the panic attacks. YOU ARE NOT ALONE and until we as a people make our voices heard nothing will change.
Residents in nursing homes are people who have contributed to our society, raised their families many have worked their entire lives and yet if we treated dogs they way they are treated the human league would be all over it and we would be in jail.
I live in an area where puppy mills are a big deal. People get upset they raise money they monitor how many puppies you can care for (and they shut the mills down) zoning monitors how many dogs you can have…yet the state of Pennsylvania does not staff nursing homes with such diligence..staffing is not based on acuity of care but on sheer numbers. So according to the state I can adequately watch 20 adults despite the level of the care.
I saw: ants crawling on people at least two residents one died the next day after we showered her because they were all over in her bed. Another resident had them crawling in all the openings of his body including his eyes. They blamed him called him a hoarder and guess what…the incident is not state re portable. I saw nurses exchange narcotics for aspirin. I saw a charge nurse take other people PRN medications and give it to residents who called or or would not sleep “to shut their ass up”. 3 of those residents had “psychotic breaks” it is my opinion they were overdosed. Of course being a CNA I could not prove what I was saying but their are at least two other licensed staff that have come forward to say I am telling the truth. I just can’t prove it. I saw a resident who sprayed himself with RAID because he was afraid bugs would crawl on him. I saw ants spiders, cockroaches and centipedes and mice. I watched as a woman who was a full code beg for hours to be sent out to a hospital die on her way there because the 3-11 shift supervisor met his quota for sending people out and if he sent her out before midnight they would not be paid. I saw people with no shoes no socks no underwear I brought them in clothing I despite the fact that $40 a month was supposed to come from their social security for that purpose with no accountability for the funds. I saw people with MRSA push themselves with open wounds on their arms touching the hand rails. The locked dementia unit was like something out of a 70’s horror show. I reported an aide for throwing cold water on a resident to get them to lie down and nothing was done. I watched nurses go in the “quiet room” to sleep during the 11-7 shift and leaves aides to watch the floor. This is the tip of the ice berg…not to mention how horrible employees were treated- especially those who complained.
I tried calling the state. The only time I got them to move was when the air conditioner which had not worked right in over a year stopped working and we experienced 100 plus degree temperatures and I took pictures of the thermometer and swore at them and said if they did not do something I’d call anybody who would listen to me.
I wrote letter to my state rep who referred me to the Health Board…another waste of time. Agencies like the PHCA help horrible nursing homes give each other awards for excellence..they forget to mention the organization is a PAC and the poor people coming in think the awards are given because it is a good place. It is a farce.
Something has to change.
Take pictures of your mom. Do it once a week.
Note skin conditions, ask to see her medical records. Ask to see her meal percentages and ask to talk to who fed her. Write it all down in a journal. Write down names and dates. Take an inventory of her things. Call the State and complain for every single violation you see- those who complain the most get the best care I saw it many times. Document, Document, Document. Get and keep copies of their policies. Make sure you can access her medical records at all times at no cost. Check her bowel and bladder records. Ask for the names of the aides. Ask for the names of her nurses. Ask to see her medication record. Ask for copies. Don’t take their word for anything…because trust me they won’t take yours if something happens..that is why you have to document.
Something has to change.
yes all great things to do but what about ,when the only son and life long helper to his mom and dad in all areas BECA– USE he cares is a good person and son is told by the care facility that he can no longer get his dads medications list 17 of them at one time and the falls reports in 22– days 6 that we know of ,2 needing er and 5 stiches all within 10 hours of each- sons been told he cant get info as the managment advised the poa mother that the son is causing confussion and intimidating the staff by asking for info even thought he has been on dads med info since the start of this night mare? sorry for a rant I just cant understand why the inspectors dont get in there and DO SOMETHING that actually helps,these very unfortunate humans whom should never have been put into these disgusting types of CARE places they all have issues and all need massive overhauling but with goverment not putting the eyes on the prize or putting buts in the seats that are likely wet ?-and covertly investigate there will be the usual slap on hands resulting in more crap cares and more $$$$ in the pockets of the management and owners of these CARE facilities ???? WHY? good enough isnt good enough when we may all be in this hell even if we want to turn the other way and hope it all goes away?!who can help ,
P.S. I hope you don’t mind if I share this……..
God bless you, Phil. I felt so much empathy for your story. I do want to point out (which I know first hand), this problem is NOT restricted to ALZ/Dementia patients in these places. My own mother, who is sharp as a tack, declined significantly during the two stays she had in two different SNF’s in 2 different cities. I have been blogging about her (my) story and would love to share it. I am convinced that until enough of us say ENOUGH and make ENOUGH noise, the problems will only get worse. Thank you for sharing……..trust me, I know it’s not always easy as I am a year and a half behind on telling our story through the blog. http://homesbythecase.blogspot.com/2013/07/1-too-tired-to-think.html
Thank you. Please share my story…
Thank you for sharing your story. This and my own story is why I’m writing the book. Many blessings for you
Thank you. Maybe I will too….
Phil, my thoughts & prayers are with you…. I can so relate to your situation!
I think the people that have others in a home, need to go spend at least 4 or 5 hours there… like you! Many go for 5 – 10 minutes and it ‘looks’ great… so the assume all is well! I’d like to put those people in a home and make them stay a year!!!
I had my mother in my home for months at a time… she went to a home and called me when she would get a UTI or not feeling well… (I would call my son, he would call the estranged care giver to let her know) had I still been in control I would have GONE to the home and taken her to the ER, the person ‘taking care of her health issues’ was oblivious to real life there and to concerned with their social life to see the sign’s, so would call the home to have the ambulance take her, whenever the home got around to calling!
Mom went from 176 lbs living with me to 104 lbs, 2 short years later! THANK you for you article and openness!! I personally feel she died of a broken heart & lack of attention she would have gotten if she stayed in my home where her friends and relatives were more than welcome to come visit!
My biggest fear in life is ending up with Alzheimer’s, my second it ending in a home! Your mom is VERY Blessed having a caring, loving son like you to watch over her!!! God Bless you both!
Thank you. Mom still has a good appetite. Even if the food isn’t great.
I, too, am struggling. I was laid off from work because I was always needing to leave to take care of my parents needs. I used to work in special events but had to quit and take a job at a Church close to home. Bills have backed up. My Mom was no longer able to walk and was on oxygen, had NPH and COPD. Her medicines, even with insurance, cost over $600 per month when we hit the “doughnut hole” every year. My Dad was self-employed and instead of starting a retirement fund he got life insurance instead thinking he would die young. He never thought he would get Alzheimer’s. We cashed in his policies to cover costs. Eventually, all the money ran out. My Mom passed away and now we live only on his Soc. Sec.. The house in foreclosure and I have drained my own retirement fund trying to keep us fed and housed. He needs full time care but is not to the point of going into a home, not that I would put him in one with everything I have seen in them (like you). My brother was slow to get involved but is now. He is also dealing with a lot in his family and is working a job that is beyond full time. My sister lives in another state. She has the means to really help but doesn’t, except to criticize me at just about every turn. My friends are wonderful people but other than one who lives very far away, they are absent and have a hard time understanding. The last time I got out with just friends for fun was over 16 months ago. My health is now a mess and my credit, which was once excellent, is now destroyed. I have reached out to other relatives who have been such a blessing to me and given me a few “miracles” but I can’t rely on them to solve every emergency for me indefinitely. I want to work from home in some way but can’t afford a computer. It is so hard. I wake up almost every night with anxiety. I tell myself how lucky I am compared to so many others in the world and I am but that only works for a little while. It has even become hard to pray because when I pray I start thinking about the obstacles and I start to panic or cry. Anyway, reading what others are struggling with makes me feel like I am not alone. Thank you for fighting for reform in the system. I try to, as well. I have some awful stories, too. There are some horrible people out there. I have also met some angels. I am trying to do some small things for myself. That usually makes me feel guilty. I am following our struggles. Thank you for posting and please continue to share your journey with us.
Jennifer have you checked into whether your state would pay you to be a stay at home caregiver for your father as an alternate to placing him in nursing home care?
Thank you. This is not right. I know about siblings! LOL.
I too have a loved one in a nursing facility. It is my husband that has Alzheimer’s. I think that it is impossible to find a good Memory Unit. He has been in two and I have toured others. He was combative and could not go back to the first one. The one that he is in now is better and he seems to have adjusted to it. I am sort of afraid that if I complain too much they will take it out on him. He was over medicated sometimes and I complained and I have not noticed that again. Most of the residents there wander in and out of others rooms and into their belongings, and I don’t know of a way that can be prevented, because that is what most of them do. I think that most homes need more activities for those that are in the Memory Unit. The one that my husband is in have activities for the other residents and some from the Memory Unit can go there, but not all. If they just had someone to come and sing to them or try to encourage them to join in the singing. Play toss the ball or etc. I am very disappointed, but the doctor’s think that I cannot take care of him, because he gets combative, but I may have to bring him home because this is out of pocket pay and we aren’t eligible for Medicaid yet. When we do become eligible, I won’t be able to survive with no money. What can I do? I know that there are others like me. There is an ombudsman that visits homes in the Arkansas area and she was a member of the church that my husband pastored for 38 years. She keeps check on things as best as she can.
Thank you. Yea, I’ve talked to the ombudsman. She knows about us.
This sounds so much like what my own mother went through with her own mother. While working a full time job she took care of Grandma. After Grandma went into a nursing home facility she had to work her job, AND oversee the staff at the facility, AND jump through the hoops for all of Grandma’s financials. That was about 20 years ago, and it seems nothing has changed.
Stay strong, and keep fighting. I’ll keep you in my thoughts a prayers.
Thank you. Same story, different decade. Why is that?
I understand your concerns and frustrations I am an LPN in LTC the vast majority care very much for the residents but are so overwhelmed that every day is a bad day and I have at the very least 30 pts an impossible day every day.
Thank you. Oh, my, another tragic story. This is why I will not stop. I will not shut up. I will not sit down.
None of this gives me hope for my husband’s end stage care. He’s 53 and has dementia. I get another 30 plus years of caring for someone i was divorcing when he got sick…….I’ve given up my entire life ad from what I read here, Im never going to get it back until Im too old to enjoy it. I’ll spend the next 30 years taking care of someone who doesnt love me and never did, just because he doesnt have anyone else. Yes, Im angry and resentful. He did this to himself, and just like when he was drinking, Im the one who has to pay for it. His life is calm, serene, organized. Mine is chaotic. I will probably die before he does , just from what the stress does to me.
I am going to give an opinion that many may not like. I’m sorry for your situation but you are in no way obligated legally to take care of him. Call adult protective services and meet with the worker and have them get him a placement in a facility.
I feel your pain. Get some help, now. Put him in a nursing home with Medicaid. You are worth more than this.
Why are you doing this? And to yourself? Get help quick! You can’t do this alone. Why are you?
Phil, My name is Bill Archambeau, no one can understand your grief more than I can. First of all my beloved wife Julie was diagnosed with dimentia after being exposed to black mold for 71 days. Our healthy dog died from a pulmonary embolizm as a result of breathing the mold and I survived the exposure only because I use a cpap mask when and if I slept.
Next came a fall and a broken hip, then the first Nursing home where she fell again because they forgot to put the warning buzzer on her in case she tried to get out of bed. My angel was a tiny girl but full of life up until then. They took x rays and I read them however they came up vague and ambigious. After a week of watching her suffer and go down hill i called an ambulance and had her taken to the emergency room. When there they found two broken discs, 8 discs that had been in the degeneration stage had collapsed and 5 ribs had cracked.
The nursing home refused to take her back so the doctor put her on a mental ward and I puller her out and brought her home. The doctor arracnged for everything I needed to care for her by myself. There is no family or friends here so I had to pay for every thing I needed to get done.
When we weened her off of the many medications they had her on for demintia, altzhiezmers and parkinsons she began to response. She was in constant fear from the experience and I have been marred to her for he29 years in a marrige that could only be described as two becoming one. We worked , ate, slept, traveled and enjoyed ourselves toghther running our own company and enjoying it 95% of the time.
When the Doctor found I had brought an action against the nursing home for thier neglegence and allowing her broken bones to begin to heal for a week before I had her taken to the hospital he told me to stop the suit or he would drop us as patients. He had been our primary care physician for at least 9 years.
I told him he was blackmailing me and he agreed but held fast with a follow up certified letter giving us 30 days to find another doctor.
I dropped the suit and he had people sent in to the condo with us. Some helped most did not as they did not know how to move her as she could only be moved by holding her in four places.
He sent in hospice but her vitals did not warrent that treatment and they were of some help until they messed up her food she was taking through a tube and gave her diahreah. This could have been cared for without too mjjch trouble but they never left enough solvent and bandages to clean her after several or more movements a day.
I finally got the food adjusted and cured two of the wounds but I was working 20 hours a day to care for her. It was not work itt was my way of telling her I loved her more than myself and I would not alllow anyone to harm her again.
Finally they put 13 foley cathaters in her in less than ten days ad she has lost 70% of her cognitive skills back when she was exposed to the mold.
One of the cathaters caused a bleed and she was put in a hospital overnight and hospice was to take her to thier facility so I could get a weeks rest but they would not adminster the medication the doctor from the er gave her so I took her home again.
Eventually she stopped eating and would not let anyone near her but me, She would eat for me and help me to help her but she did not want anyone else.
They put her in the hospital when she got a bronchial infection and from there the doctor *new one) put her in a nursing home and asked me to spend as much time with her as I could while she was there to make sure they did not change her treatments.
They broke the feeding tube, changed the food, stopped feeeing her by mouth certain foods that kept weight on her and gave her energy.
On the night of her birthday they sent her to the er but did not inform me, because that morning i had a meeting with the administer of the nursing home and gave her a written complaint of all of the things the doctor asked me to make sure they continued to do.
I had pictures of the wrong medications, food, of her lying at a 10degree angle while she was on the feeding tube.
The sheriffs office came here and told me she was in the er because the nursing home stated I turned off her oxygen. I offered to take a polygraph and that endend that.
I spent the 23rd,with her all night and into the 24th, almost around the clock, I had the stealth camera turned on and helped the staff with her with the doctors concent.
On the morning of the 27the I got a call at 05:30 telling me she had an incident and was sliding down hill, i was at the hospital at 0545, the nurse told me that it appeared he feeding tube rubtured and she lost all of the food in her stomach, followed by a massive loss of blood. I asked how much blood and thye agrreed well over a litre.
I called the sheriffs office who has a post done and are still investigating my wife’s passing because she did not want to die and her vitals signs were all well within the don’t worry stage.
I spent 53 Months with my Angel like this and would do it again, I will never go into a nursing home if I can help it nor will I let anyone close to me be admitted if I have the authority to stop them.
THE FIRST THING ANYONE SHOULD DO WHEN CHECKING OUT A NURSING HOME IS TO AVOID THE TOUR OF THE SELLING POINTS AND FORCE THEM TO TAKE YOU TO THE LONG CARE UNIT WHERE INSIDE OF 2 HOURS IF YOU WATCH YOU WILL KNOW WHY NURSING HOMES NEED A BOARD OF REGULATION AND PRIVATE CITIZENS COMING AND GOING WITH A CAMERA TO INSURE THAT YOUR LOVED ONE AND OTHERS ARE BEING TREATED LIKE PEOPLE WITH DIGNITY.
I will keep you in my prayers and please dont forget my angel and myself.
Thank you. Such a sad story. I will not forget.
Phil, have you looked into a support group? I attended one at a local hospital and also went to the one the nursing center offers. Both were attended by people in similar circumstances. Some meetings were very emotional, but they helped because just being able to sit and exchange stories and frustrations and even just being able to cry with others who share your journey, can be therapeutic. God bless.
Thank you. I’m past the need for talking in a support group. I’m going for action.
Thank you. It’s not right and I’m ‘mad as hell’ about it. I’m taking all of you with me on this journey. i have only just begun.
Well there is a group of us in Pennsylvania that want to do something here too…all former or current caregivers, CNA’s or LPN’s. sandyrik@gmail.com
Thank you! Tell your story. Make change.
I have been in a “rehab center,” and know something about the hell you’re going through. I was only one of a few in my right mind (recovering from surgery). Had meds stolen, bad care, lying staff, bad food – once had to call for an ambulance for myself, and it was 4 hours getting there due to “procedures!”
I am amazed at your information. Thank you so much for sharing with us. I am terrified of ‘aftercare” for my Mother so I keep her with me. The fear I have now is if she progresses, I will have to submit to ‘aftercare’. Everyone tells me that it’s all stigma. I believe the stigma is there for a reason.
Thank you. I hope this helps you prepare for what’s to come. I wish someone had told me.
Oh my goodness. Reading this made me feel like I wrote it. My mom has alot of mental issues, does not have Alzheimer’s but does have dementia. She has been in and out of hospital’s, psychiatric wards, rehabs etc and I’ve experienced pretty much everything that you have described. What do you do?? It’s awful it sounds like they are ALL the same, staff untrained, clothes missing, patients wandering into other patients rooms etc. All of it I can relate. Applying for Medicaid has been a nightmare and time consuming. I care for my mother and have NO help and I have to work a full time job. It’s wearing me out and I feel helpless. Nowhere to turn. Thank you for your story it shows people exactly what is going on out there.
Thank you. I’m crying and laughing at the same time. Take care of yourself a little bit.
Phil, my heart goes out to you. My mom will be 97 next month. She has been institutionalized for the last six and a half years. Prior to that, she lived with us for a time, and before that lived in the house her and my dad built almost 70 years ago. Dad passed 24 years ago, and the care of mom has increasingly fallen on my shoulders during that time. I quit my job to stay home with mom when she couldn’t be left alone at our home. It fell on me to sell my parents home and it was my decision, when I was unable to give her the care she needed, to place her in a nursing facility. Only through the grace of God, I found a very good facility. After speaking with others who had gone through the nursing home nightmares, I felt my choice of Country Meadows was our best option. Mom had dementia and was placed in the building that houses only patients with the same symptoms. I made sure the campus had the ability to keep her through all phases, including needing complete nursing care.
The dementia unit (called memory unit) really improved mom’s condition. They really knew what she needed, more than I ever could. I don’t mean to say it was an easy transition for me. My guilt was almost more than I could bear – me, who never considered my mother would end her life anywhere than with me – was the “bad one” who put her into one of those places known for horrible, despicable stories of abuse. I went into a depression and also got shingles. Over time, I was able to come to terms with the fact mom was getting better care than I was able to offer. I have spent hours on the phone fighting with all the various agencies who are supposed to be helping us, but offer nothing but frustration. Two years ago, mom’s condition had deteriorated (along with her resources) and she was moved to the nursing center. Again, it was killing me. We were part of a family in Bldg. 1, and no one had good things to say about the nursing center. The reality is – you are going there to die. It’s the last stop and nobody wants to get to that point. While I still feel we are in the best facility in our area, I know they can do better. This unit has a combination of extremely ill residents with and without dementia. Unfortunately, the dementia patients are not getting the attention they need. I have written to the owners and will continue to do so. I will not give up on this. I have to advocate for every resident who is unable to verbalize their plight, and this includes my mom. I believe most employees understand and appreciate what I do, but I’m also sure there are many who feel I stick my nose in where it’s none of my business. I visit regularly – not every day, but very close to that. I have lost my temper, which is out of character of me. I am generally one who avoids confrontations and always a peacemaker. However, I will step up in a heartbeat if I see someone not being fed while their food is warm, or ask why someone is not attending an activity or why someone is still in bed, or even ask if they’re aware of a change in someone’s actions, and ask them to watch for a UTI.
I wrote this just to let you know you are not alone. There are sooo many of us out here. I’ve realized even my family can’t understand what I deal with at the nursing home. I am closer to other family members I see at the home because we are on such similar journeys. Lots of days, I walk into that place and I immediately have my spirits lifted. I smile and laugh with residents and employees. I smile especially for mom and tell her I love her and stroke her hand and cheeks and brush her hair – just anything that lets her know I am there. Most days I’m not sure if she knows me or not. I choose to believe she knows it’s me but unable to communicate. Other days, I feel she at least can feel someone who loves her is close by. Other days she calls me by name, or thinks I am her mother or her sister. It doesn’t matter – she knows she’s not alone. That’s what I do. Along with that, I will continue to write to the owners to let them know they can do better and I am not going to stop reminding them of that.
What you and I do is important. We care. It is our job to force others to do the same when we see a problem. It is our responsibility to make things better – one person at a time. If we’re lucky, some day someone may care about us. Giving up isn’t an option for us. I know I’m a better person because of all the people I’ve met and helped and loved, and even lost, along this nursing home journey. I’m betting you are too. God bless you and give you strength to continue and hopefully you will find peace in the end.
Thank you. Yours is also a sad story. I don’t expect to find peace at the end. Hers or mine.
Your story and mine are so closely related, it’s freaky. You have my deepest sympathies in what you’re having to deal with. Medicaid is a NIGHTMARE. I thought I was the only one that they had made repeatedly to jump through their hoops for the same darn info they had already asked for and received. My heart breaks for your mother’s situation and yours. As I said, our stories are so very similar. I will be praying for, and thinking of y’all. No, caregiving isn’t the best gift…in my opinion, because there is NO way we can give them the best. Alzheimer’s is taking that from them…there is almost no cooperation in getting them the help needed, and the list goes on. Askings that grace, mercy and blessings be sent your way!
Thank you. Every bit of encouragement helps!
Sadly, in today’s world it would appear, work ethics are truly lacking, especially in the healthcare area, and bottom line–yes, “It’s always about the money.”
Thank you. You are right, it’s always about the money. And the squeaky wheel!
Phil, Have you looked into a CBRF? It’s a community based living facility. There are typically only 7 or a residents to 2 or 3 staff 24-7. That’s the kind if agency that can really give the mental, physical and emotional care needed. most of my residents come from institutions and nursing homes. Alot of them suffer from Alzheimer’s and/or dementia as well as Developmental disabilities. I am so sorry you have to go through this. My prayers are with you.
Phil, What you have written is so true! I went through the same thing with my mother last year. it is all about the money with doctor’s hospital etc. I tried calling medicare nothing, tv station’s would not touch the story. It takes a strong person to be a caregiver! May God Bless you and your mother.
Phil I worked as a nurse in nursing home for most of my 40 yrs. as a nurse. I know exactly what you are saying. I worked 25 plus years in one nursing home and as the years went by. cares weren’t what they were at first.. Unfortunately poor pay, lack of experienced help, and over worked kept getting worse. I am now caregiver for my husband who has Alzheimers. We have been married almost 39 yrs. I am very scared and worried when the day comes that I can not care for him. Stress is very high as I also have had to file for disability for me. We have very limited income and money is extremely tight. I have no insurance and have gone without some of my needed meds for my husband. .
Never considered the squeaky wheel, but not that you mentioned it. You’re right on.