Everyone knows our story. I originally took Mom to Florida so we could live together when she got sick and started falling down. We wound up having to use a nursing home temporarily (so I thought) and that turned into long-term.
The road of eight years of nursing home care has been very bad and ultimately it has destroyed my mother’s health rather than supporting it. She has survived despite all of the abuse and neglect, only because of her determination and grit. I have scheduled and coordinated her oncology treatment and medical appointments and visited her usually every day, done her shopping and taken care of many things, including overseeing her care in the nursing homes which has been extremely difficult due to the dysfunctional nature of that system. Despite my best efforts and hers, her health has continued to decline because of the substandard care.
The past year has been traumatic. Mom has been hospitalized four times in the past four months because of neglect. In February, she entered the emergency room in Georgia in septic shock. They did not know whether she was going to survive, and she was in the hospital for a month with Norovirus, pneumonia, and an untreated urinary tract infection that had become septic because she was not being cared for properly, despite my ongoing efforts to advocate.
I was in the nursing home the night before she went into the emergency room and was going on because she was screaming and throwing fits and I thought she was going into dementia. She was discovered the next morning unresponsive with an extremely low heart rate and she would not wake up. She was in respiratory failure, and she had dried vomit all down the front of her chin and neck and shirt. We are lucky that she survived, and it turned out that her disorientation the night prior had been due to the untreated urinary tract infection, which can apparently cause those symptoms (I didn’t know that, but anyone who has been to nursing school definitely should). I had tried to discuss it with the staff the night prior and they told me that her behavior was probably because of her brain cancer. Her brain cancer has been in remission for over five years. That’s a fairly standard example of what it is like trying to communicate with nursing home staff regarding your relative’s health.
Since that incident in February, she has been hospitalized three times and she is currently inpatient in the hospital again from the same type of neglect.
I am not putting my mother back into another nursing home so they can continue to neglect her until she dies. I will not do it. After she almost died in Georgia, I brought her up to Virginia in desperation, hoping that the nursing home care would be better up here because I figured it could hardly be worse than what I had seen in Florida and Georgia. I was wrong. Apparently this is a nationwide problem.
So I have had her in three different nursing homes up here (since March) and she has been hospitalized three times. She has received two showers in that time total because no matter how much I advocate or follow up even if I go in there every day and ask in-person or have an argument with them, they do not want to shower patients.
I will leave out the rest of the gory details, but at the most recent facility she had a bad infection and we were trying to get them to test for it. They finally tested for it and said it came back negative, but she continued to have symptoms. She woke up at four in the morning last Thursday and called out for help because they had not given her a call bell to call them, which is illegal in Virginia. Every patient is required by law to have access to a method to get assistance. So she called out yelling for someone to help her and a nurse came to the door, slammed the door and left her alone in the dark unable to call for help and no way to get assistance because she can’t get up and walk. She called 911 and then called me and we went to the emergency room.
At the emergency room they tested her for the same infection that the nursing home said they had tested for and had said was negative and it came back positive (C Diff and UTI). So we were obviously lied to and it could’ve been fatal. Her white blood cell count was extremely elevated, and I was told that she was being treated as if she was septic (borderline). I think most people are aware that sepsis is extremely dangerous and can easily be fatal. We have been blessed that she hasn’t died from this.
She is currently in the hospital set to discharge tomorrow.
We got here to Richmond two months ago, and I am still in the process of looking for a house and looking for work and since she has been hospitalized three times and I have had to settle her into three different nursing homes, it has been very difficult for me to get my life set up with all of that going on. I am still staying in a hotel and looking for permanent housing and for work.
Last week, I told my mother when she went into the hospital that I refuse to have her in a facility another day. Especially given her current infection and where her white blood cell count was when she entered the hospital a week ago, it could mean her death for me to send her back to any facility.
She is going to come home and live with me for the remainder of her life. She agrees, and yesterday she signed a full power of attorney, both durable and medical granting me control over her affairs. She will spend the rest of her life with me living at home and being properly cared for. This is what I wanted from the beginning when she got sick, it has been my goal all along, to be able to provide a home environment, where she can receive proper care. She took care of my sister and I at home just like a good mother should when we were little and she nursed my sister at home for a year and a half while my sister was sick and dying. She was an excellent mother, and she deserves to be cared for at home. I can’t stand by and watch these nursing homes abuse and neglect her anymore. I only ever tolerated it because I didn’t think I had any other choice but I cannot let it continue in good conscience.
She’s being discharged from the hospital tomorrow and I’m taking her to the hotel where I’m staying and I am going to start providing around the clock care because we have no other options at this time.
Mom is entitled to nursing services at home from the state of Virginia of 50 hours per week. All I need is a house or an apartment in which to take care of her and I can get those service rolling and I can focus on finding work.
Because I haven’t been able to get a foothold up here in Virginia or get employed with all of this going on, I want to ask for some help to make the initial deposit on a house for rent and get the initial first months rent paid. I was hit with all of this last Thursday with no notice and I’ve had to make a lot of very fast decisions with the goal of her not dying in mind.
I appreciate any help. I will never stop trying for her and I am willing to do anything she needs for her to be OK.
I told my mother when she was in the hospital in Georgia after she nearly died when they finally got her stable and we were sitting in the hospital room together that she was coming home and that we would spend these coming holidays by the fireplace at Christmas and that she wouldn’t have to go through these nursing home nightmares ever again. I intend to keep that promise and if anyone is willing to help me, I would greatly appreciate it.
Maybe you listen to this story and wonder why I don’t have my life together more and the answer is because when she got sick, I wasn’t set up to take care of someone. I had a roommate and I wasn’t in a mindset of owning a home and being ready to be a caregiver. I have struggled for eight years to deal with this situation and I have had very little help. It is very hard to make any headway on getting your life set up for at home care when there’s this constant dysfunctional situation going on with the nursing homes and you’re constantly trying to prevent someone from dying. You basically wind up treading water every day. That’s the way that her care has been and that’s the way my life has been trying to help. I have done the best I can, but I really need some financial help to get into a permanent situation where her care can be stable so that she can be healthy and I can focus on providing for her financially for the rest of her life.
I don’t know what it’s going to cost for me to get into a rental house. It might be $4000 or it might be $6000. The point is that we are grateful for anything
God Bless,
Ashley