June 28, 2020

Our President, Fran Rhodes, recently launched a project to collect personal stories of people who have family members on Covid lock down in nursing homes, long term care facilities, and hospitals.  The purpose of the project has been to bring this tragedy into the light of public opinion, in hopes of getting the Governor to amend the lock down orders for these people.  Click here to read the op-ed article about the project and how it got started.

The stories have been published, a few at a time, on Fran’s personal facebook page, but they are shared here in their entirety.  They have been sent to Governor Abbott, Lt Governor Patrick, HHS Commissioner Wilson, and the corresponding State House Representative and Senator.  Please consider contacting the statewide leaders and legislators mentioned in the article, and ask them to end the suffering of these precious people.

There are 19 stories all together, but for each one of these, there are surely another hundred or more just like it.  The lock-down has gone on now since mid-March.  Something needs to be done.  People are literally dying – not from Covid 19, but from the lock-down protocols.  Please read the stories and share – but keep your tissues handy, because they are heartbreaking!

Story #1

My father was admitted to the hospital last Monday. My sister (an RN) took him to one hospital & they told her to wait in the car. She explained, because he was ill, he was slightly disoriented, was deaf, & he needed an advocate.  They said NO, so she took him & left. Then she drove 45 min to another hospital (where my Dr. Sister has privileges). They both were told they could not be with him until he had tested neg for COVID. They gave him a test, 1 1/2 hrs later his results were negative. They told my sisters they would have to give him another test 12 hrs later before they could move him from “covid testing floor” to a room, and my sisters were not allowed to see him. The 2nd test was admin. @ 4 am Tue morn. Results negative @ 6 am. No bed as of 6 pm (my nurse sister waiting in parking lot all day?). By 8:30 they kick all visitors out.  My sister returns on Wed & still he has not been moved out of “covid testing floor,” till after 4 pm. My father was near death, septic, no advocate? My Dr sister was able to talk to the emergency Dr. about medical history and medication but only because she pushed & pushed. My dad almost died. Not because of Covid, but because some medical administrators (who probably have no medical background) have put in procedures that a are killing patients. Our seniors deserve better.  On a side note: Dr.’s and nurses, and help are all amazing but they are stretched and tired of masks, and communication breakdown, & these hospitals literally are holding people hostage. It’s not American. One last note: when my sister tried to give him his hearing aids and phone charger, they told her NO. They couldn’t accept anything directly from her hands. When she asked to leave them at the front desk for him, she was told they would “try” to get them to him. Not acceptable. These hospitals & Dr. offices that are implementing these unnecessary procedures to keep family from advocating, need to be held accountable. They need to answer for the ridiculous stress they have caused families.

Story #2

My cousin is in a nursing home in Longview, TX.  I live about 20 miles away and am the nearest (in proximity) kin to her.  She turned 99 years old on May 24.  I was not allowed to see her except through the window.  The nursing home has kept not only her but all those in her wing in their rooms since all this nonsense started.  The only ones they are allowing in are the nurses and caregivers who go home every day.  The residents aren’t even allowed to mingle in the great room.  Basically, they are prisoners.  This seems to be coming from the CDC.  We need to open up immediately.  Those people need family and friends just as much, if not more, than those of us who can still move about.  Common sense needs to prevail.  PLEASE open Texas.  Stop this nonsense.

Story # 3

My husband and I have been married almost 46 years.  He is 76 and I am 72.  He had surgery following a brain aneurysm in 2006 and has had some mental problems ever since.  In 2012, I quit work to take care of him, for 7 years until March of 2019 when his behavior became so erratic that he was sent to a geriatric mental hospital 3 times, and he currently resides at a facility in North Dallas.  He became a permanent resident there the end of June last year and I have visited him 6 or 7 days a week since that time until the lockdown of March 13.  For these past 3 months I can only see him through a window with a screen on it off the lobby.  It is hard to visit because his voice is weak and I can barely hear him.  His hearing is bad so he can hardly hear me.  We put our hands to the window but there is that screen which even makes seeing each other hard.  He cries and I leave.  We talk on the phone many times during the day.  I help him find his TV channels and he complains about the boredom.  His old roommate missed his wife so much that he cried out so much that my husband had to move across the hall.  That roommate died over a month ago, and I know that although his health was poor it was a broken heart that he finally got to him.  Another resident that my husband roomed with is bedridden, so I know that he has no contact with his family that was faithful about visiting.

My husband cries all day from loneliness.  Every day I think about bringing him home, but the doctors are afraid that his violent tendencies will never go away.  And then there is the Medicaid that we qualified for – if I pull him out then that goes away.  I have asked the staff if we could both wear masks and sit out in the front porch/driveway area for 10 minutes. The answer is always NO.  Because the governor has not lifted the order to stay in place for the nursing homes, they do not want to violate any rules.

I have written the governor and written to a state person who probably does not want involved because he is running in November.  I am beyond frustrated to see my husband.  Those residents go without human touch and it has been 3 months since they have seen loved ones.  My husband says he would rather die than stay there.  I am beyond frustrated.  If we could only sit on the porch a few minutes every now and then I know my husband would be much better.  They do not eat in the dining room any more – everyone eats in their room.  There are no activities.   Staff is low and the ones working are so overworked I don’t know how they stand it.  It is an existence much worse than jail – much worse.  And I know my husband’s story is repeated with every resident at every nursing home in Texas.  My husband says he would much rather die of covid than loneliness and I truly agree with him.  These people are in there because they are in their last days.  They would rather be happy with the time they have, and they are not afraid of covid as what finally ends their life – it is faster than the dementia that most of them will succumb to.  So, my options are to bring him home or keep the status quo.  And that is not acceptable.  If I could get an audience with the governor – and believe me I have thought about driving to Austin to try that – I believe he would be touched by the personal stories of others and of my husband.  So sorry, this was longer than I anticipated – but something has to be done about this.  Truly it is something out of science fiction.  I hope my story when added to others will help make a difference with Gov. Abbott.  If you cannot make a dent in this policy, then I will probably go for a class action suit.  I would barge into the home, but I would probably get arrested.  And that may be just what the news media will cover to make this insanity go away.  Please help if you are able.  Thank you.

Story #4

When is it ok for them to take your rights away from you and your loved ones? I miss my mom. At the hospital, they wouldn’t let me in and didn’t treat her till test came back negative. Her brain exploded in the transfer from Covid floor to regular ICU, and she died. Why do they think it is ok for someone to die alone? All our rights have been taken. You can’t even grieve because you feel so alone. I have tried and tried to do this all by myself. I feel like it is not right. I need to fight so at least another family will never feel the way I do.  It hurts.  She didn’t deserve this. She was only 58. I took care of her day and night i knew what she needed they didn’t listen. She didn’t code they still vented her. I have utmost respect for doctors and nurses but this set and this hospital failed her for sure. We can’t allow them to do this to our loved one’s it is not right. She didn’t have covid and was automatically treated as such and I know she was scared. I tried everything even went there, they would not let me in. This is not fair.

Story #5

My mom has Alzheimer’s and has to have 24hr care and is in a facility. We don’t know how much lucid time she has left because her decline has been rapid and I haven’t been able to see her in almost three months…. all they’ll tell me is that they don’t know WHEN I can see her.

Story # 6

My mother is residing in one near me in the San Antonio area. Though they have tried to encourage staff by cooking for them or create fun activities to go through the halls with for patients, parade or FaceTime calls it has had negative affect on my mother.  She doesn’t really get to join in activities unless I am there with her. On occasion she will but generally not without me.

My mother is partially paralyzed and has dementia. She is very much on an emotional roller coaster daily. She has needs that as a family we make sure are met. She can’t dial a phone, get up and go on her own, open up her snacks, write down anything, get something to drink, brush her dentures, keep up with her glasses, put a bib on, clean herself up, turn tv on or turn channels, go to activities, or go in the hall just to visit. She has to be moved, put in and out of bed. She doesn’t always know how to think and ask for these things as needed. It breaks my heart to not see her to help keep her mind clear and to help her remember us. To know she’s not alone. To not be afraid or sad.

I absolutely appreciate caution and care for our families and the employees BUT surely there is other ways to keep us in contact and visits. Even if it were limited to once a week or month by appointment in special areas.

My friend and I donated lunch and are always dropping goodies when we are there to visit. We show love and kindness so our loved ones have a chance to receive it back. It’s just been way too long and way to difficult being separated.

I have ridden twice to follow up appointments with my mother because she fell out of bed and broke her hip at the start of Covid19. It shouldn’t have happened because they needed to have her back MRI done but somehow took weeks and it was too late.  She was then in surgery for her hip and missed the apt that finally had been scheduled. See these are reasons why keeping us from our family members is harmful to them. We are not there to protect love and watch over them. We are their eyes and their voice.

Thank you for listening to me poor out my heart. I love my mother with all my heart. It’s not easy for her, for them or for us.

Story #7

Our young adult son has an intellectual disability and is living in an Intermediate Care Facility (group home) in Stephenville, TX. He wanted to get out on his own as much as possible, so he chose this particular place because it’s near Tarleton State University and has lots of cowboys & rodeo folks, one of his passions. Before the COVID-19 lockdown he enjoyed going to his dayhab each weekday to work a job, visit with friends, play games, go on field trips, etc. He also rode horses at an equine facility and worked out with a college student in their physical education program. He is an extrovert and loves people! His daily life was active and full.

Under the lock down, our son’s days are monotonous and dreary. The staff constantly prompt him and the other’s in the home to remain in their bedrooms…to include eating their meals there. Due to his intellectual disability, he doesn’t quite understand that he still has a right to walk into another room, step outside or eat in the dining room. He’s compliant and will do what is asked, so he sits in his room for the bulk of the day and night watching TV and napping. There are times when he does go outside to sit in the backyard. His facility says they don’t have the staff to even take him on a walk. He can use the telephone, but that’s certainly not the same as personal contact with friends. Besides, his disability does not allow for typical telephone conversations.

Although our son has an underlying health condition, as his guardians, we believe his quality of life has suffered long enough. It’s time for him and the others to be able to attend dayhab, go on outings, get outside, see friends, and just get back to normal. The staff can continue to take precautions with cleaning and wearing masks if that’s necessary, but please don’t make the residents suffer another minute of lock-down. It’s cruel treatment.

Story #8

It is very clear that Covid-19 is a serious issue and needs to be addressed.  I am grateful the State of Texas has taken steps to protect the citizens or to help the citizens to protect themselves during this time.  Granted, as a diverse group of people, the state needed to make laws to protect the most vulnerable senior citizens in nursing homes.

I question, however, whether some laws in place serve the intended purpose , or whether the law is more detrimental to the individual in the nursing home than it is beneficial.

My mother is 96, has been diagnosed Cachexia and Alzheimer’s disease.  Her body and mind are both deteriorating.  She needs more professional care than I can provide alone.

If I were to place her in a nursing home today, I would not be allowed by current law to visit her with any type of physical contact that she needs.  She needs to know I am there for her.  At home she has that contact with me, but not the constant medical care.

I recall David Vetter, who lived in a sterilized area all his life.  When he was dying and wanted out of his bubble, there were doctors who were adamant about not letting him out of the contained area.  What is more important, the desire of an ill and dying patient to see and touch their loved ones possibly for the last time, or to allow them that final freedom?  This is not a one-sided issue.

The answer, I believe, is somewhere between the current law and just opening up the nursing homes.  There needs to be an avenue where, in a safe environment, patients in nursing homes can have some freedom to see, touch, hug their loved ones.  Exactly how this can take place is outside my personal skills or knowledge, however, the knowledge is out there somewhere between medical and industrial professionals.

Story #9

My mom is 93 and is living in a memory care facility. She is full of life and very active in her community. Seeing her family is so important to her. We take her out for lunch, family get togethers and girl nail spa time. Of course, we haven’t been able to do any of that since the first part of March.  Almost two weeks ago she was not herself and it was discovered that she had a UTI. She has finished her second round of antibiotics but she still doesn’t want to eat or get out of bed. Now she is even refusing to FaceTime or talk to any family member. It’s like she has given up!

I don’t know if mom will come out of this or not! But I want to see her before she gets any worse. It would be so easy to slip in a back door close to her room during a meal time when no one was around, have my temperature checked like the employees do and visit her for a few minutes. No one in her facility has CV19 or any other contagious disease.

Story #10

So you are aware, the Covid protocol kills!!! I just lost my husband of almost 50 years last week!

When the lock-down of our nursing homes, memory-care facilities, etc. started, patients were no longer allowed visitors. Family members do a lot to care for these people and when we were shut out, there was much more for the small staff to do. Most of the people living there only live for their loved ones! When no one came (and with dementia, etc.), they can’t remember why they are abandoned and alone. Few of these people have phones. We had a short FaceTime weekly – not enough!!!

Many lose hope and just stop eating and drinking! My husband gave up, lost 36 lbs in 23 days, and no one told me!!! We rushed him to a hospital as soon as we found out but the spiral was so fast and he passed away. The Covid Protocol killed him! This is happening all over our country and world! Evil!!! Tracking won’t protect us!

Story #11

After a four hour trip from out of town, we decided to drive around to the back-side of my parents’ nursing facility to wave to my father who was sitting on “the slab” as he likes to call it. The slab is a concrete patio situated underneath a pavilion.  My father, a Korean War veteran, likes to sit out there, often to “get some Vitamin D” and solitude.  It had been three months since I had seen my mother and him. Three l-o-n-g months.

As my husband is coming around the bend and “the slab” comes into sight, I see my father already up on his walker and slowly making his way down to the gate at the back of the property.  I had only intended to wave to him, but here he was heading down the sidewalk.  I hopped out of the truck so he could see me; see that I was really there to help my mother and him celebrate their 66th wedding anniversary.  A day that should have been VERY special.

As he neared the gate, I asked excitedly, “How are you doing, Daddy?” “Fair,” he barely spoke. I asked him what was wrong. “I’m sick and tired of being locked up in this hell-hole!” he bellowed.  I asked, “Daddy, would you like me to say a prayer with you?”  And after saying, “Yes”, he reached up and through the gate for me to hold his hand (as we always do when we pray), and instead of me taking it, I told him with tears in my eyes and a knot in my throat that I couldn’t because I didn’t want to pass anything on to him (although I wasn’t sick).

The look of disappointment on his face is something that will be etched in my memory forever.  I told him that I was sorry, and I went on to pray and sob at the same time.  My prayer came from the heart, but I don’t know if he really heard any of my prayer.  I don’t know if he cared to hear my prayer.  What I do know is, at that moment, all he really cared for was to touch his child.  All I really cared for was to touch my father.

Upon leaving that day, I passed along my encounter to my family.  I said, “If for whatever reason something should happen to Daddy before I get to see him again and touch him, I will never forgive myself for not having reached up and grabbed his hand to let him know how much he’s loved and missed.  Never.”

And all I can do now is pray to God above that he allows me, my family and my parents to have that chance again.  The best medicine for my parents, right now, would be for their children to caress them and remind them we have not forsaken them.

Story #12

My dad, 84 yrs old, was a resident of Kirkland Court (KC) in Amarillo for about 18 months. It was the last place he called home. KC locked down their facility in March due to ‘orders’ from Gov. Abbott.

The last time any of us saw him in person was in mid to late Feb. He was tested for COVID-19 on April 23rd due to a number of staff and residents that had become infected. His test was negative and he stayed at KC. He was very symptomatic and I believe that test was a false negative.

He was taken to BSA Hosp in Amarillo due to severe breathing difficulties & was tested again on April 30th. It was positive.

On May 3rd his team of doctors called and stated that he was at “end of life” status and was given a 1% chance of survival. Still unable to visit him in person. We all got together and thru several phones using FB messenger video chat, FaceTime, and other video chat programs, we were all able to see him in ICU. He was in a high flow oxygen environment and we had trouble communicating effectively. We figured it would be the last time we’d see him or talk to him.

On May 6th they called and said he was going back to KC. I was shocked. I knew he was doing better and was able to talk to him on several occasions from the 3rd thru the 6th. They had made a COVID-19 wing at KC and were able to take him back and care for him there.

After he returned to KC, it was extremely difficult to talk to him due to logistics, poor communications of a revolving contractor staff, etc… He tested positive again on May 10th.

I received a mailed notice dated May 15th that 14 staff & 19 residents had tested positive for COVID-19. The last time I talked to my dad was the day I received that letter (sometime around the 19th). He passed away on Memorial Day, May 25th, with only one nurse present that had only been taking care of him for that day. No family was ever allowed to visit him in person after the lockdown started.

Story #13

My mother is on hospice basically due to dementia and other physical ailments. She is 88 years old and lives with a great deal of confusion and delusions on a regular basis. With the shut down in effect the confusion and delusions have increased. This has led to having to increase her anxiety meds. Approximately 2 years ago her anxieties and progression of dementia were so bad she had to be placed in a mental facility for a short period of time. Since then the doctors have been able to regulate her meds and keep her stable. But my greatest fear is that with the continued seclusion and increase in her anxieties that she will require hospitalization again. No senior should have to experience that in the last stages of their lives.

I also expressed my concern to the Governor that without any oversight from the state or families, protocols in the facilities might not be followed as strictly as they should be. We all know that state representatives visit the facilities on an irregular basis during normal times so I am sure that state visits have been severely curtailed.

There are ways that visiting areas can be designed with safety standards being met. Testing could be required for visitation as well as scheduled visitations in these safe visitation areas.

Passing the buck to another agency is not right Governor.

Signed:   A Very concerned advocate for my Mothers health and wellbeing.

Story #14

This story is from a nursing home worker:

A lady I’ve witnessed decline in a community has mild dementia and she’s always been very vibrant especially during musical performances.  She always thanked me after music, telling us how much she enjoyed it and the music brought back so many memories. I see her daily get quieter and more detached every day.  The last time we had music outside, she said nothing following the performance. This same lady daily asks if her daughter is going to pick her up for church or hair appointments and I gently tell her there’s a flu bug so her daughter can’t take her out at this time.  She drops her head and says, “I don’t know what I’ve done to make her upset with me.  I don’t know why she doesn’t come get me.”  She cannot keep a thread of thought and understanding due to the dementia so she perceives it as being locked away and forsaken by her daughter.  This has happened countless times since the end of March.  Yesterday when I got to work, I greeted her as normal and I asked, “Hi!  How are you??”  She said, “I’m ok…no I’m not, I’m sad.  I don’t know why my daughter won’t come get me, I don’t know what I’ve done wrong.

Story #15

This story is from a nursing home worker.

A lady saw her son outside the door who brought her a cheeseburger for lunch.  I had to receive it from him at the door and give it to her although she was sitting right inside the door.  She was so thrilled to see him and they chatted 8 feet apart for about 15 seconds.  When he walked away, she said to me so proudly, “That’s my son!  That’s my son!  Then she began to cry…sob.  I put my arms around her and loved on her and she thanked me.  It was excruciating to me and God knows it was to her.

Story #16

This story is from a nursing home worker.

Because patients are required to wear masks, they often come out of their rooms without one because they’ve forgotten.  They are consistently getting sent back to their room for it.  It’s just a cold directive from staff, “Go back and get your mask!”  “Where’s your mask?  Go get your mask.”  Additionally, with the 6 feet apart rule, they are constantly being reprimanded for sitting too close with the directive, “Social distancing, so and so!  You’re too close.  Social distancing!”  These people with memory issues have NO CLUE what that new phrase even means and it is being received as constant reprimanding.  I had 4 distinct instances of the following happening:  I am always cheerful and do not chastise them.  I greet them excitedly each time I see them.  Four times, four different women responded to my greeting, “What did I do?  What did I do wrong now?”  I calmly and lovingly replied, “Oh nothing!  I’m just so happy to see you!”  They are being treated like children

Story #17

This story is form a nursing home worker.

Another woman has a husband with Alzheimer’s and lives in a memory care community.  She routinely went to see him and he knew who she was.  After 2 1/2 months of being away, she got to see him through glass and he had no clue who she was.  She literally lost 2 1/2 months of that precious time with him.  Had they continued their normal routine, I have no doubt he would have been ok.  Although that is bound to happen with Alzheimer’s, it was definitely sped up due to no seeing or interacting with his wife.

Because they are required to wear masks, they often come out of their rooms without one because they’ve forgotten.  They are consistently getting sent back to their room for it.  It’s just a cold directive from staff, “Go back and get your mask!”  “Where’s your mask?  Go get your mask.”  Additionally, with the 6 feet apart rule, they are constantly being reprimanded for sitting too close with the directive, “Social distancing, so and so!  You’re too close.  Social distancing!”  These people with memory issues have NO CLUE what that new phrase even means and it is being received as constant reprimanding.  I had 4 distinct instances of the following happening:  I am always cheerful and do not chastise them.  I greet them excitedly each time I see them.  Four times, four different women responded to my greeting, “What did I do?  What did I do wrong now?”  I calmly and lovingly replied, “Oh nothing!  I’m just so happy to see you!”  They are being treated like children.

Story #18

This story is from a nursing home worker.

Another lady sits in the entry looking out the window and keeps to herself.  Although 99 years old, she is extremely sharp and does not have dementia.  I asked her to share with me how all this is affecting her.  She said, “Well, it’s depressing.  I feel sorry for all of these people.  I feel bad for the ones who’ve had it (Covid) but I just want to know when this is going to end.  I’ve had my test and I’m negative, but I just want to know how long this is going to go on.”

Story # 19

This story is from a nursing home worker.

In this community, when a resident leaves the community for ANY reason they are in a mandatory quarantine in their small room for 14 days.  They cannot for any reason leave their room.  One lady had to go to the ER and when returned had to be quarantined.  She found at the ER that she has stage 4 pancreatic cancer.  She was sent back to the community on hospice with no visitors allowed except the hospice nurses.  She had a dog that she would daily walk several times a day, but since she was quarantined, she had to give the dog to a family member.  She lost her dog and contact with all the outside world.  She’s completely alone.  There are 2 more of those stories there.  Trips to the ER, put on hospice and then quarantined for 14 days.  Completely unacceptable and inhumane.  It’s got to STOP.  It’s cruelty to be dying alone in a tiny room with no family.  Even after the quarantine, they still cannot see family because they aren’t allowed in.