Covid and how my mom has been treated!!

Covid and how my mom has been treated!!

Where do I start??

I am going to start with what is currently happening and then my mom's story after being diagnosed.

Nov-2020 My mom is suffering from Lewy Body Dementia and has been living at a nursing facility in Rochester NY for the past 4 1/2 years. knowing that she has behavioral issues with men they moved a new resident (man) into the room next to my mom. The resident is social and mobile and now talking with my mom. My mom told me she liked him he was very nice and that he was in love with her (the usual stuff) Next thing I know the night nurse calls to tell me that my mom will not leave his door because she is in love with him and she didn't know what to do!!! I said you don't allow me to come here so you will have to figure it out. I will call her cell phone to see if I can get her back in her room. That didn't work so they had to give her a shot of meds to calm her down and get her to her room. Two days later I got a call that they found my mother in his room touching him!!

I had a scheduled 20 minute visit with my mom the next day and after our visit the social worker came in to say they will be moving my mom to the second floor near women because of the most recent incidents. I said we need a meeting to discuss this because they helped to fuel this by putting a social man next to her. The social worker said "we would never make a decision without you"
The next day I got a call with all of the leadership team on the phone, I said I can't talk. I have my 20 month old granddaughter crying and my 7 year old grandson in virtual school. They said I quote this will only take 2 minutes!! We will be moving your mother to another facility that can help with her behaviors because we can no longer help. She is a danger to herself and other residents.
I said this is not a 2 minute conversation and we need to set up a meeting when I can concentrate. I said goodbye and hung up the phone to attend to my granddaughter.

Later that day they called several times and left no message. Then sent me a text message around 5pm saying please call I need to talk with you, it will only take a minute. I texted and said I was just getting back from taking my grandbabies home and I would call back shortly. I needed a little time to get my head together from a very hectic day and thinking about what they had told me.
They had called again and left a message to say we will call you first thing in the morning. Well they never did call until 2:30pm and said your mother will be taken by ambulance to the hospital for an evaluation in about 20 minutes!!! I had to call my mom to break the news, she said she wasn't going anywhere! Well after a short time she did go.

Just imagine this 83 year old frail woman with dementia going to a busy emergency room all alone!! I was not allowed to go because of the governors rules!

Thank god for her cell phone, I was able to talk with her all night long. She was in a gown with a blanket in a chair in the hallway for more than 48 hours then in a room in the ED for 1/2 a day before getting a room in the hospital. In the meantime no one called me, no doctor, no nurse or no social worker. I left several messages for someone to call me. I spoke with the social worker from her nursing home and she said she knew nothing.

I called the hospital patient rights, hospital social worker no return calls. I called the Ombudsman from my moms facility and they called back and gave me some advice. I asked if her doctor from her nursing home could call the hospital to see what the hell is going on! No call from her doctor. At this point they took my moms cell phone, I assumed it was out of battery. Now I had no communication with her! I couldn't stop thinking of her just sitting there scared and alone.
My best friend called ED to see where she was in the process and they gave her a doctor to talk with immediately! Imagine not even a legal family member! She did a 3 way call so we finally got a few answers. I am so grateful for my best friend.

Again my daughter remembered that she has a good client who works in ED and she called him, he checked in on my mom and gave my daughter some advice and the number to a social worker. This social worker was wonderful. She found my mom and let her use her cell to talk with my daughter. We felt better that my mom was doing ok. They had started her on different medicine and she would hopefully be in a room soon.

Still no call from a doctor or PA on what her plan was! In the meantime my mom is now in a room on a floor with COVID cases!!Well I just about fainted when I heard that!!! They are allowing one visitor per day. No COVID test needed !! Governors rules!!!!!!!!!!!!!!!! how does that make sense??
It has now been 6 days and I still have not heard from a doctor or PA. I speak with the nurses extensively and they leave messages for the Dr. and PA daily with no response!!

My mom is so exhausted from her experience in ED. She told me someone took her cell phone, she was peeing her pants, crying and so scared, it breaks my heart to think about it.

Now jumping back to her history at the nursing home she was in:

My mom was diagnosed with Lewy body dementia in 2015. We could not care for her at home and had to place her in a 24hr care skilled nursing facility. Anyone who has had to make this decision understands the guilt you hold. We were very blessed (so we thought) that she was placed in a really top notch facility in Rochester through Medicaid. ( FYI high end facilities do take Medicaid)
Within 2 months of her stay she befriended the security guard that sits at the front desk. He was sitting in her room with her several times a week? My mom told me about him and I asked the staff, their response was, we thought they knew each other from their past! I said they did not and told them I did not want him in her room. My mom thought they were in love and she was getting obsessed with him. One day I was taking her out and walked through the lobby and he came from around the desk and kissed her on the cheek! I was infuriated and called him when I left. I told him to never kiss her again or put his hands on her and if he did I was going to administration.

My mom would get depressed and cry because he wasn't coming around. Next thing I know they are talking on her cell phone. I looked at her cell bill and they were talking several times a week! With that information I went to administration, they did nothing but talk to him and he said he was just befriending her. At the time my mom was 78 with dementia and he was 60. It stopped for a few months and my mother was devastated, crying and blaming everyone who worked there. Then the calling started again, my mom was calling his cell phone and the work phone several times a day, her world was planning and plotting how she was going to see him and how they were going to run away together. She would write him notes and put them in envelopes and address them to him. She would give them to me to mail, I wouldn't send them of course but told her I did.

I called administration again to ask for a meeting. I found out the administrator was terminated and there was a temporary administrator filling in from another facility. At this point I had called my friend who specialized in elder law. He offered to join me at the meeting but they wouldn't allow it! So I hired an expert in the field of Lewy Body Dementia to join me and explain what effects this has on my mom mentally.

This administrator said there was nothing in this security guards file about any past incidents but if I wanted him gone he would fire him. Needless to say that never happened!!!

The security guard stopped talking with my mom and the cycle continued with her emotions up and down. Then it started up again, they were talking over the phone and he would come up to her floor and walk by her room and talk to her. We had a meeting with the new administrator and staff and he was written up again and not allowed to go on her floor or talk to her.

Next thing I know she tells me she is in love with the new maintenance guy. They have been talking to each other and they have plans to meet at a hotel! Well they were talking to each other! They were calling each other on their cell phones. I had taken her out one day and sure enough he called her! This is a 50 year old married man with 3 kids calling now an 81 year old woman with dementia!! I copied the cell bill and called the administrator again. Needless to say I was a little more than upset! They reprimanded him and put a new policy in place that employees are prohibited from calling residents on their personal phones and he is not allowed to go near her or her room now!

Well the cycle started again, my mom was depressed and lonely, crying a lot, accusing everyone there that they don't want her to be happy etc. etc. etc.
March 2020-Now were in the pandemic and lockdown, I hadn't seen my mom for 5 months, only facetime once a week for 15 minutes which didn't start until around May. Since it was now nice weather I had asked if I could visit her outside in the garden with a mask and 6' apart Answer was no.

July -2020 I had always called my mom twice a day and some days she would call me 3-4-5 times a day. I called all day and she wasn't answering her phone, sometimes she would turn the volume down by mistake and could not hear the phone ring. So the next day there was no answer so I called the nurses station and asked them to look at her phone because she wasn't answering it. They came back and said she can't find her phone? I asked if they could search her room for it to be sure it was gone before I went out to purchase another cell phone.

Well that went on for days and I was calling the nurses station to get the cordless phone and give it to my mom to talk. They said she was always sleeping which wasn't like her? A Saturday night in July the nurse called and said they found my mom on the floor, she had fallen I guess, the nurse said?? she is fine.

I called the PA in the morning and she assured me my mom was fine but was sleeping a lot. On Monday we had facetime and my mom looked awful, she said she was really tired and could hardly keep her head up. She said her back was killing her. I asked that they give her something for the pain.

I called the PA again and left a message for her to call me, my mom's doctor is not there daily. Later that same day the Doctor and PA called and said my mom is not doing good, she lost 8 1/2 lbs in the last few weeks and she is not eating, they don't feel she may make it and that I needed to decide on a DNR plan (do not resuscitate) which we already decided when she was admitted 4 1/2 years prior? I was beside myself asking many questions crying you can imagine!
I asked to see her again. The answer was no I'm sorry the governor will not allow it. I emailed the administrator begging to see my mom, no I'm sorry the governor will not allow it. My daughters and grandbabies and I went to her window to see her at 8:00am. She didn't know it was us for a few minutes. She looked frail and weak with her head hanging down!! We all left so sad we thought this was the end.:(

My daughter had a client that was an administrator at another facility, she called him and told him of our situation and he said there is a compassionate visit rule and your mom will qualify but you have to get in their face and push it. So I did, I emailed the administrator again and asked for a meeting asap because according to the doctors we don't have much time left.

One day later the social worker called and said we could visit for 2 hours that day and 2 hours on one weekend day and then they would review the situation! I was so grateful, my husband and I went to visit and we were all so happy to see each other. She had her PJ's on, no makeup, very tired looking, she just looked terrible. My mom was always dressed with her jewelry, makeup, hair done etc.
That Monday the social worker called and said you can come visit anytime! Great, I was so happy I could spend her last days with her. Well within a few days you could see that she was feeling better, more energy sitting up more talkative, starting to eat and within a month she was herself. Her back was still sore from the fall but she was walking around!

Aug - Oct 2020 I asked the doctor what went wrong. They thought it was a combo between increasing her medication and depression due to not being able to see her family.

Once they saw she was getting better they limited my visits to now once a week for an hour in her room then to one -1 hour visit and 1- 20 minute visit in the conference room. And then a week later changed it to 2 -20 minute visits in the conference room. Their rules!

This is how our seniors are being treated. My heart just breaks for them!! If this story helps one person I will be grateful:)

Do not hesitate to send a message or comment if you have questions.

With gratitude,


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