# My son Joey and his COVID-19 journey



## Aneeda72

I decided to start this thread about my son and his journey with Covid.  Mostly because, should he die, I want to remember every bit of his passing, every moment of what could be his last days; or hopefully of his survival of this terrible virus.

At my age, 75, memory fades, and the details of the deaths of my other three infant sons, decades ago, are lost in the among all the other memories of the past.  I don’t want this to happen again.  Also, since we can visit him in the hospital, on the Covid ward, I am able to keep a photo journey as well which I will start this afternoon.

The beginning of this thread will be repetitive in some respects as I recall yesterday, although yesterday seems a lifetime ago.  I would ask members to not respond argumentatively and make this thread a debate about vaccination.  But I know it is a hopeless request.

So many people have become so disrespectful, lately, on SF, in regards to issues of COVID-19.  Still, my need to record every second of what happens, and have it available to me, over rides my caution.  Plus, many of us have lost friends and family to this virus.  Many of our members have survived the virus.

Joey has Downs Syndrome and has many of the issues associated with it.  The children’s hospital we picked him up from predicated he would live about six weeks.  The adoption agency told us every baby deserves a home, not a nursing home.  I fed him, every hour, with a syringe as he had no “suck” ability.  He slept in a basket between us on the bed.  He weighted four pounds.

He had open heart surgery when he was 9 months old.  His heart was more holes than heart.  After the surgery, his lungs collapsed, his kidneys failed, and he reached up and pulled out all the wires in his chest.  He was a challenge and a fighter.

He health was always iffy.  He survived several pneumonias.  He had a stroke at age five and had to relearn how to walk, etc.  He had multiple ear surgeries and after one surgery he was released from the hospital, the nurse gave him a tablespoon of pain med instead of a teaspoon, and when we went to take him out of his car seat-he had stopped breathing.  Thank God for paramedics!!!

As he got older, his health improved.  When Covid hit, with his poor lungs, he was kept home for months.  He thought he had been “bad” and was being punished.  I don’t think he ever truly understood he was being kept safe.  Eventually, the sheltered workplaces closed, his roommates stayed home as well, and his understanding grew.

Then the vaccine came.  Everyone in the groups homes that were owned by his particular provider were vaccinated.  A couple months later the sheltered workshop opened.  Everyone returned to work.  Things have been fine for months.  He was scheduled to return to working at his job, at a restaurant, soon.

Yesterday, at 4:30 am, he woke because the power when out at his house.  It had been storming.  He had a severe stomach ache, difficulty breathing, coughing, a fever.  In the afternoon, he was fine.  I talk to him on the phone every day.  Every day he has been fine.

Yesterday, he mentioned his friend, from sheltered work shop, had been home with COVID for a week.  She also has Downs Syndrome.  He also mentioned another friend, a male, had Covid.

Due to his on-going medical issues, the paramedics were called.  The paramedics called me for permission to treat, I am his legal guardian.  His heart rate was too fast, he was having trouble breathing, a fever of 103 was noted. He had severe stomach pain, chest pain, trouble breathing.  I told the paramedics he has been exposed to Covid.

He was rushed to the ER.


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## Kaila




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## officerripley

Oh no, Aneeda, so sorry to hear this, hoping for the best.


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## Jules

From his history Joey has always been a fighter.  These are tough times.


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## Pinky

Hoping with all my heart, for the best @Aneeda72


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## Judycat

My heart is there.


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## AnnieA

Praying, @Aneeda72 !   As soon as you're able to talk with his primary provider, ask about monoclonal antibodies.


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## Chris21E

Such a Beautiful and brave family with you both always...
Thank you


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## Aneeda72

The doctor had Joey call us to ask when we will be in today.  I will see him between 12 and 1.  I will ask about the monoclonal antibodies thanks @AnnieA.  I have also made a really hard decision and wanted to make it early when I still have the ability to think.  Just in case the worst happens.

I will sign the DNI paperwork.


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## GeorgiaXplant




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## Sunny

Hoping for the best, Aneeda.


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## Ruth n Jersey

@Aneeda72,I am so sorry to here this. My thoughts are with you and your family.


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## Sassycakes

I'm so sorry to hear what you and your son have been going through. You both are in my prayers.


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## Shero

A Prayer for Joey and Aneeda

Heavenly Father, give Joey, Aneeda and family the hope and courage they need today and every day during this tough time. Comfort their pain, calm their fears, and surround them with Your peace. Walk closely beside Joey during his journey to healing and recovery and bless the doctors and nurses who are doing their best to bring him through this ordeal.


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## Aneeda72

So he arrives at the ER, I already called my son, woke him up, and he meets his brother at the ER.  He constantly sends me texts as to what test they are doing, what they are giving him, how he is feeling.

When the paramedics were on the phone to me, I I formed them of his exposure to Covid.  As soon as he gets to the hospital a Covid test is done.  It takes a few hours to get the results.  They scan Joeys stomach and chest.  Find the cyst.  Get an ultrasound of his heart.  Put in a IV, give him morphine for the severe stomach pain.  Then the long wait for results.  

My oldest son says Joey is being difficult.  Yup.  Joey is cognitively six years old.  Most of us know how a six year old acts under these circumstances.  The results start to come in, the cyst is worrisome.  I get husband up and get to the hospital around quarter to 8.

Meanwhile, no one from the group home has shown up at the hospital.  I am beyond .  At six I start texting every phone number I have related to people who work at the group home.  I find, on line, an email address for the director and send her an email.  I text and call Joeys social worker-no one responds.

He needs the book.  A book is kept with all his medical information in it and his insurance paperwork.  Normally, a caretaker shows ups with the book, keeps track of everything done with Joey, and stays with him through the ER process and hospitalization.  Four hours later no one responds, no one shows up.  I can not tell you how angry I am.

I call adult protective supervision to file a complaint.  The worker wants to file charges of abandonment and neglect against the supervisor and so do I.  But the workers supervisor refuses.  

My husband drops me at the hospital, goes to their office, and can reach no one.  Then I get a call, from Joeys group home director, saying he slept in, he’s sorry, he will head over.  Just get the book and get here and I don’t want to talk to you.

Just before my son leaves the doctor walks in, in full gear.  .  We will be moving him to a Covid room.  He has Covid, I ask.  Yes, didn’t they tell you?  Nope.  Son leaves, calls work, and they decide he will work from home for 7 days before returning to the office.  My son is fully vaccinated and has had Covid.  It would be rare for him to get it, but why take a chance.

The group home worker shows up with the book, after four and a half hours.  . If this had happened last week when we were in Texas with our sick daughter and our son was on vacation with his SO, Joey would have been alone for who knows how long.  So very angry.


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## Aneeda72

Shero said:


> A Prayer for Joey and Aneeda
> 
> Heavenly Father, give Joey, Aneeda and family the hope and courage they need today and every day during this tough time. Comfort their pain, calm their fears, and surround them with Your peace. Walk closely beside Joey during his journey to healing and recovery and bless the doctors and nurses who are doing their best to bring him through this ordeal.


Thank you @Shero


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## Aneeda72

I leave.  I can’t stay in the same room with the worker.  It would not be pleasant.  It takes hours to admit someone to the hospital.  He waits with Joey, that’s his job.  The Covid ward is full and Joey is placed on a different floor.

(I am glad.  I am sure I do not want to go on a Covid ward.  I do not want to see the really sick and dying.  It is scare me.  It would scare him.  His room is a regular room.  It’s a nice room.  This hospital only has private rooms.)

I go home and finally people start to respond-too little too late.  I am very angry.  I talk to his social worker, tell her Joey was admitted with Covid, tell her no one came for 4 and half hours.  Eventually I get an explanation, it’s crap, CRAP.  

Supposedly, the group home manager was not trained properly and did not make the right phone calls.  She will be trained today.  Crap, crap, crap.  The director calls, apologized, explained, blah, blah, blah, crap, crap, crap.  I keep a hold of my temper.  Except telling them I am so made.

She assures me that everyone involved on this shit show will be spoken to and retrain.  .


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## Aneeda72

It’s 10:00 pm when the phone rings.  It’s Joey.  Mom?  Yup, hi Joey what’s up?

She wants to give me a shot in the stomach.  I don’t want a shot in the stomach.  My stomach hurts.  

The nurse needs to give him a shot of a blood thinner in the stomach to prevent blood clots.  (The phone is on speaker.). She tells him this, he refuses.  He has the right of refusal, so she can not give him the shot.  Thus the call to me.

He is a bit panicked-she said he has clots on his legs.  He doesn’t want clots in his legs.


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## Kaila




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## Devi

Yikes. How big was the needle, I wonder?


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## Shero

Aneeda72 said:


> It’s 10:00 pm when the phone rings.  It’s Joey.  Mom?  Yup, hi Joey what’s up?
> 
> She wants to give me a shot in the stomach.  I don’t want a shot in the stomach.  My stomach hurts.
> 
> The nurse needs to give him a shot of a blood thinner in the stomach to prevent blood clots.  (The phone is on speaker.). She tells him this, he refuses.  He has the right of refusal, so she can not give him the shot.  Thus the call to me.
> 
> He is a bit panicked-she said he has clots on his legs.  He doesn’t want clots in his legs.


As the phone is on speaker, is it possible for you to stay with him and chat while he has the shot?


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## Aneeda72

The nurse has given more information than he can understand.  I tell him to remember he’s a man now.  I tell him he has to do what the nurses and doctors say, I tell him to close his eyes, and the nurse will give him the shot.  I tell him a few times .

He agrees.  He closes his eyes, the nurse said it will only take a second, he gets the shot.

It hurts he says.  The nurse says it stings, it will stop in a minute but for him it hurts.  Good boy I say.  Good job Mr. Man.  It hurts he says.  Do I have clots?  Nope,  no clots.  You are fine.  Bye mom, he says and hangs up.

. It hurts I think.  It hurts so much that he is in the hospital with Covid.  I never cry, never.  My eyes fill with tears, water rolls down my face.  It hurts so much.


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## Aneeda72

Devi said:


> Yikes. How big was the needle, I wonder?


I doubt it was big, but a needle in the stomach is scary for everyone.


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## jujube

Oh, Aneeda, you have the patience of Job.  I would have gone postal on someone by now.  What a s**t show that was.  

Take care of yourself, so you can be strong for your son.  Repeat, TAKE CARE OF *YOU*.


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## Alizerine

AnnieA said:


> Praying, @Aneeda72 !   As soon as you're able to talk with his primary provider, ask about monoclonal antibodies.


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## Alizerine

--------------------------------------------------------------------------------------------


Alizerine said:


> Forgive me if I posted a non message. Just wanted to offer prayers for Joey and say that the antibodies are a good idea if administered early.


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## MrPants

Sorry to hear you are having to go through this situation   I wish you continued strength so you can best help your son through this. You have been and will be his guiding light. He's lucky to have such a loving mother! Hoping for his full recovery


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## Alligatorob

Hey Aneeda, hard to know what to say in your situation.  Except that Joey is very fortunate to have you, and let you know I'm hoping for the best.


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## Aneeda72

And so I come to this morning.

Joey calls.  I can tell right away he is worst.  He did not sound congested yesterday -today he does.  He has a wet cough.  Covid is progressing.  We talk about breakfast, how he got to order what he wanted.  A cheese omelette, hash browns, sausage 

When am I going home?  Last night he was told he had to stay overnight.  Was it last night, I wonder.  Already I am getting the time confused.  Yesterday afternoon dad saw him.  The nurse said he would be there four days or was it my older son?  So stressed, I am unsure.

But no one has told him.

A few more days Joey, maybe four.  You have Covid after all.  He says his tummy hurts.  His nurse is in the room he says.  Tell her to give you more pain meds.  He does.  She will.  I want to go home he says.  I am going to die in the hospital, he says.  

No, no I say.  Remember, your brother had Covid, his girlfriend had Covid, your sister had Covid, her husband had Covid, the baby had Covid -remember?  None of them died.  They are fine.  You will be fine.  And the nurse tells him she has his medicine, and we talk a little more, and I tell him I will see him this afternoon, and we hang up.

And he is not that sick, yet.  But he is sicker than the others ever were.  And Covid moves fast, so fast.  And I wonder will I see him this afternoon?  Crazy thoughts, of course I will.  But, I know, how many did not.  And the tears come, unbidden, again.  I fight them down.

My older son texted me.  This must be hard for you and dad.  How are you holding up?  I tell him the truth, I don’t want to talk about it-ever.  

I get a text from my daughter.  She got her spinal shot yesterday.  She is still in extreme pain.  I remind her the shot can take 7 days to work.  I remind her to be sure to eat and drink.  She still cannot walk.  She asks about Joey.  He is worst I say.  .  And I know she is sick, and I know she is in pain, and I know she is scared, and I want to scream at her-your brother has Covid.

But she knows that.  .  I send a message to my doctor.  I tell her about Joey.  I tell her I might need medication, cause, I might lose my mind.

Joey calls.  The doctor wants to talk to you, when are you coming.  We set a time, the doctor is in the room and confirms the time.  Joey has ordered a hamburger for lunch, and chips, and a coke.

He says he is sorry he got Covid.  He is sorry he scared me.  He is sorry he called me late last night.  . Can he go home now?  He missed his roommates party.  He wants to go home.  I explain the policy.  I explain that even if he was home he has Covid.  He could not go to the party.

I explain when he gets home, he has to stay in his room until he tests negative for Covid.  He says he knows.  Knowing is not understanding.  He doesn’t understand.  He has an IQ of 53.  How can he possibly understand.  I don’t understand.

He tells me one of his roommates has to stay in his basement room.  (He might have Covid, I think.).   Or maybe they all will just quarantine in their rooms.  I don’t know.  It’s very complicated.

What he is going through, is what any hospitalized child with Covid will go through.  What I am going through is what any parent goes through.  It’s unbearable.  

He says he just has a little covid.  I know.  It’s just a little Covid.  We finish our call.


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## Chris21E

Oh Aneeda72 it does hurt...Hugs  Such a trying Day...


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## Aneeda72

We are on the way to the hospital when Joey calls again.  Are you coming? Yes.  Doctor wants to talk to you-yes.  We are on the way now, we will stop and grab lunch, and then we are there.  How long he asks.  Half an hour I say.  You are taking forever, he says.

Are you having lunch, I ask.  Yes, he says.  Hamburger.  Well, I need lunch as well.  Ok he says.  We get to the hospital, husband waits in car.  I go upstairs.  Husband tells me what room he is in.  (Oh, it was my husband that went yesterday afternoon as the memory pops up.  I also remember now that older son asked for his room number so he could call later.)

Older son wants to go and stay with him in the evening which means we could not see him in the afternoon.  I refuse to let him.  In fact, I am now rethinking letting my husband go today.  Anyway, more on that later.

I get to the nursing station, get the new Advance Directive form.  (I have not yet filled it out.  I’ve picked it up several times, looked at it, not filled it out ).  Go into his room, he is finishing lunch.  His oxygen is off.  He thought this was good news.  Said on the phone it was off, he is better.  I tell him probably not.  Told him they were testing his ability to breathe on room air.

He says I am not his doctor.  No, I agree, I am not.  But, oh well, I drop it.  He will see.  His oxygen alarm goes off several times.  It goes as low as 84.  Doctor comes in, he is very nice, very patient.  We talk for half an hour and never once does the doctor look at his watch or act like he’d like to leave.


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## Aneeda72

I ask about the monoclonal antibodies-too late for those.  Must be given before Covid reaches this stage, usually in the first day or two.

Do you know how long he’s had Covid?  No, he replies.  No way to tell.  But his inflammation markers were low on his blood test yesterday.  Because of that he can have remdesivir, an anti viral, which will help at this stage.  Later on, when the inflammation markers are higher we still give this drug but it is not as effective.  Apparently, these markers help indicate how bad Covid is.

Do you know what’s wrong with his stomach?  (He has severe pain in stomach and has received IV morphine for it beginning in the ER.)  Covid is causing the stomach pain, he has changes in his stomach consistent with Covid.  .  I don’t ask what changes.  I probably would not understand the answer.

He seems sicker today.  Yes, the doctor replies.  That is the normal progression of Covid.  His oxygen alarm goes off.  Doctor says, let’s put that back on, ok?  Joey reluctantly Agrees. The doctor explains his oxygen is off for meals, to make it easier for him to eat and drink.  They will assess him Friday for his ability to go home.  He will a new blood test-today-for those markers.

I ask about his heart.  The cyst they found is not urgent.  The ultrasound was showed his heart function was ok.  The cyst will be assessed after Covid is over.  Will he have/get long Covid, I ask.  Probably not.  Most patients who are vaccinated and get Covid, do not get long Covid.  (Nothing is a 100% of course.)

What kind of Covid does he have?  Since 90% of the Covid in Utah is delta, is am pretty sure he has delta.  We do not test everyone for the variety.  (I explained to the doctor how two of Joey friends at the shelter workshop have Covid.  It is certain that Joey got Covid from Erika, a girl friend.  I learned the afternoon of the evening that Joey got sick, from Joey, that Erika was home sick, for a week, with Covid.

Joey also says her parents have Covid.  I learn from the director of the group homes, earlier, that the director learned today that the sheltered workshop is shutting down for two weeks due to the Covid spread.  It spread like wild fire in that disabled population although every single person there has had two vaccinations and wears mask.)

I relay this information to the doctor.  Yes, he says, that is delta.  If they had not been vaccinated, they would probably die.  Joey’s friend Erika, who has Down’s syndrome as well, does not need hospitalization.  Her parents also have Covid.

Our conversation continues.  Joey became very overweight during the Covid lockdown-this is a huge risk factor for him.  Having Down’s syndrome is another risk factor but the weight is the biggest issue.  It can not be known just how sick he will get.  It is a waiting game.

We discuss my doing a DNI.  He agrees-there is no way to know how someone will do on the “tube”.  How long they will be on it, how much damage will occur because of it.
I thank him and he leaves.  Joey looks very tired.

I discuss with Joey how he is drinking a coke,  not a Diet Coke.  He smiles and takes a drink.    He has Covid, I tell myself, let him have the dang coke.  I tell him it’s ok in the hospital but once home, it’s back to diet.  And once he is well, and he will hate me for this, the human rights paperwork will be filed and he will go on a strict diet to lose weight.

The doctor has said that people who have been vaccinated and had Covid have a strengthened immune system.  This is pretty much common knowledge as far as I know.  The doctor says a new study, unpublished as yet from Israel, confirms what we all have assumed.  But he will still  need the booster.

Joey is tied.  I go home.  I get no more calls.  I do not call him as he will call me if he needs anything or wants to talk.  In addition, the group home people call him, his brother calls him, and the doctor wants him to sleep and nap and rest as much as possible.

Besides I know how he is.  He is sick.


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## Butterfly

Aneeda, I am so sorry your family is having to go through this.  I will be keeping you and your son in my prayers.


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## Shero

Aneeda:  Hang in there Cherie, it is in Joey’s favour he is vaccinated.


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## SmoothSeas

Butterfly said:


> Aneeda, I am so sorry your family is having to go through this.  I will be keeping you and your son in my prayers.



seconding this...

tell Joey that we're all in his corner.


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## Aneeda72

My rambling thoughts.

The hospital situation is strange.  The doctor is in PPE, a lightweight paper covering of his clothes, yellow.  I have not seen a nurse yet.  The doctor wears the “bubble mask” with tubing for clean air.

Joey is unmasked in his room.  Coughing up a lung usually.

I am in the room.  I could have a yellow paper cover if wanted, but I see no point. I wear my clothes out in the community, soaking up the virus wherever it is.  I see no point in wearing the paper gown in his room.

I wear a KN95 mask.  (I think that’s what it’s called, too lazy to look).  No bubble head wear for me or any other visitor to a Covid patient.  One visitor a day is allowed.  I stay a half an hour.  Joey has the delta variety of Covid.  So I am exposed to the delta virus, the entire time I am in the room, as is any other visitor who sees their family member with Covid.

The hospital does not give an information sheet on your risk of catching the virus, if you should stay so many feet away from the patient, or any info at all.  There are no hints on if you should quarantine after these visits, or go home and change, or go across the parking lot and shop at the local Costco.  Strange.

You are supposed to be vaccinated, but no one asks for proof.  The only requirement is wear a mask, any mask.  Strange.  I had the booster a week ago today.  I am all set on vaccine.

I call my doctor to reschedule an appointment, explain the situation, and the stupid receptionist says I need a Covid test before I reschedule.  What?  I don’t have Covid, I just saw him for a half hour in a hospital.  A Covid test will be negative, it doesn’t show up in half an hour.  I can’t tolerate stupid people.  I give up on the appointment.  I am not getting an appointment.  I do not care.

I think of the many people, hunkered down in their houses still, and here I am choosing to expose myself every day to the most catchable Covid virus known; just to see my son for 30 minutes.  Even though he once again has a fever.  I am not worried.  I am not afraid.  It is worth the risk.

You either get the virus or you don’t.  

But I decide not to let my husband visit for a variety of reasons.  He has no problem with not going.  Yeah, I knew he wouldn’t have a problem not going.  My oldest son really really wants to go sit with his brother.  He makes the case that he eats out a lot and if he catches the virus, he could of got it anywhere, like before.  Nope.  I have to have at least one child I don’t need to worry about.


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## Judycat

Keep talking Aneeda.


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## Aneeda72

Good news, kinda of.  Joey has been released from the hospital and has just now gotten home. He was sent home with active Covid, of course, and on 2 liters of O2.  The usual shit show happened.

No one told Joey he was being discharged.    When I told him, he wanted to talk to the doctor, , cause I was not the doctor and he decided he was not well enough to leave.  . Shortly after I had left, doctor called, said she spoke to Joey and he agreed to leave.

I was called, later, cause the assistant director did not leave his phone number.  I gave the hospital his number, texted him that Joey was being discharged, and emailed the whole group to ensure everyone knew Joey as leaving.

To be continued:


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## Della

Oh that really is good news, I'm sure the doctor wouldn't be releasing him if she didn't feel he was pretty much out of danger.  He will probably sleep a lot for the next week or two while he recovers and his own bed is the best place for that.

I hope you can sleep now, too, Aneeda, and that the worst is over. 
Praying for you and Joey.


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## Aneeda72

Della said:


> Oh that really is good news, I'm sure the doctor wouldn't be releasing him if she didn't feel he was pretty much out of danger.  He will probably sleep a lot for the next week or two while he recovers and his own bed is the best place for that.
> 
> I hope you can sleep now, too, Aneeda, and that the worst is over.
> Praying for you and Joey.


Yes and no.

When the hospital can no longer do anything for the Covid patients they are released to home on oxygen.  But we have all heard stories of many of these people sent home dying.  Covid can still go very bad, very quick.

He has an oxygen monitor on that tracks his levels at the hospital.  But, we do not know who responses if he gets into trouble.  We have yet to find that out.  And the group home people are, well, not exactly able to cope.  I consider the assistant director down right stupid.

He sent me a text explaining how they have a box of PPE items, and start will wear complete gear, amd cleaning supplies for the house etc. and how this was.    I replied, yes, great for all of you, too late for Joey.  What an idiot.

How did you know I have not slept?  . @Della   I am still very worried.


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## Kaila

Aneeda72 said:


> I am still very worried.


I would be too, even though I do hope he will improve soon.
And he might.  We sure hope so.


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## Aneeda72

Then I get a call from home health care, they also do not have the director’s number.    Or joeys address, or where to deliver the oxygen that he needs.  OMG.  So I text the director, again, after giving them all the information.  The oxygen delivery finally gets set up.

The associate director picks Joey up from the hospital, takes him home, finally responds to the calls and everything is fine, finally.  Then I get a text from this idiot.  Do I have Joeys glasses.  Nope, why would I?  Yup the idiot left Joeys glasses at the hospital.  The hospital can’t find them.  Ugh, just ugh.


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## Aneeda72

Joey, I am sure, is happy to be home.  I am also sure he does not understand what being in his room for a minimum of 14 days mean.  Although, the hospital recommends 21 days as you can shed the delta virus, apparently, for 21 one days.

 But wait.

What happened to if I am vaccinated, and you are vaccinated, and one of us gets Covid, we can not give it to each other.  Well, that works with the other varieties.  Doesn’t work with Delta.  Thus all the PPE delivered to the group home to protect everyone else, who by the way, have already been exposed via the sheltered workshop and Joey.

There is also another major problem. If you are vaccinated, you may not show symptoms.  Since you don’t show early symptoms, you shed and spread the Delta virus like a firehose.  This is how all those disabled adults in the sheltered workshop caught Covid.

Then, due to the privacy acts which effects all those disabled adults, no one was informed that some clients had Covid.  When Erika stayed home because of Covid, the group home was not notified cause Erika lives at home with her parents.

When Joey asked where Erika was, he learned, the day before he fell ill, that she was home with Covid.  He told me.  I told the paramedics of the exposure.  The next day I told the head group home director about Erika.  This was the first time she heard there was an issue at the workshop.

Erika really likes Joey.  Erika gave Joey Covid.  That day, the morning Joey got sick and I texted everyone in the world.  The workshop closed for two weeks due to the massive amount of Covid infections.

And then the real shit show began.


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## Tish

Aneeda72 said:


> Then I get a call from home health care, they also do not have the director’s number.    Or joeys address, or where to deliver the oxygen that he needs.  OMG.  So I text the director, again, after giving them all the information.  The oxygen delivery finally gets set up.
> 
> The associate director picks Joey up from the hospital, takes him home, finally responds to the calls and everything is fine, finally.  Then I get a text from this idiot.  Do I have Joeys glasses.  Nope, why would I?  Yup the idiot left Joeys glasses at the hospital.  The hospital can’t find them.  Ugh, just ugh.



How frustrating it must be for you, prayers sent your way. Stay strong and keep on talking about it, we are all here for you.


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## Sliverfox

Am just now reading this,, cried  as I totally know  how  a mother feels separated from a son who is ill .

You are one  tough woman,, take    a deep breathe,,its one minute at a time.

I will add Joey and you to my nightly prays.


----------



## Aneeda72

All those clients who live in groups homes go to sheltered workshop during the day.  Now the workshop is closed and the clients are home for two weeks.  When the clients are at workshop, no one staffs the groups homes.  Now staffing has to be found to care for all the clients in the group homes who are now, well, home.

All those disabled adults have the right of refusal.  Which means they can refuse to be tested for Covid, so unless they get really sick, like Joey, no one knows how many clients are sick and how many clients are still spreading the disease in the group homes, and elsewhere.

Plus, if any of the employees quit, because of Covid worries, then there is no staff to care for all those clients.  Any clients with Covid, have to be contained and not all clients are as cooperative as Joey.  Shit show.

Not to mention the contract tracing for all these people who have been out into the community, with their families, working at jobs in the community etc.  and everything reported to the county.  It’s an endless nightmare.

I learn all this endless crap because the director is trying to explain how short staffed they are, how they didn’t know about the Covid at the workplace, and how sorry they are that Joey was not taken care of for those four hours.

Ok, got it.  And as  as I am, and I am mad, I get it.  I am not going to report them to licensing or this other place cause it seems they now have enough of an issue without my making it worst.  And it seems that everything that could go wrong, and shouldn’t have gone wrong, went wrong.  

But, as we all know, shit happens.

I do not blame them, or anyone, for Joey catching Covid and I tell them so.  It’s a virus.  I do blame them for the continuing incompetence displayed by the associate director of Joey’s group home.  But I keep my mouth shut on this.  Everyone knows every place is short staffed and all work places must take who they can get.  (Heck, even I might be able to get a job )

But Joey doesn’t understand what staying in his room will mean.  Especially no phone access, to do daily phone calls to mom.  . After a long conversation with our oldest son, tomorrow we go to Walmart and purchase a burner phone for Joey, so, if he chooses, he can start a life of crime.  

Our oldest son assured us we can do this.  He assures us Joey can be taught how to use a phone with buttons as he uses a phone with buttons at his house.  I am not so sure that we can get the right phone.  We will see.  I am sure Joey can learn to use a simple cell phone, if not, the staff can help.

Meanwhile, hopefully, Joey will keep his oxygen on, stay on his room, rest, continue to heal, and survive Covid.  We will go to the group home every day to check on him, phone or no phone.


----------



## Aneeda72

He was really tired today when I was there.  His fever had broke, his oxygen intake was better, but he still is very pale, his stomach still hurts, and he feels terrible.  He wants to shave when he gets home and he needs to wash his hair.  I hope they help him.  I doubt he is steady enough to shave on his own.


----------



## Judycat

He's a good looking lad.


----------



## Aneeda72

Judycat said:


> He's a good looking lad.


Thanks.

Unshaven, unwashed, tired as heck, sick as a dog, but my beautiful youngest baby boy, he is


----------



## Della

Aneeda72 said:


> a burner phone for Joey, so, if he chooses, he can start a life of crime.


Hee! You must watch as much Dateline as I do.

Hoping all is well this morning and somebody has found Joey's glasses.


----------



## Shero

Really nice to see Joey looking so good Aneeda. Bet you’re one happy but very tired Mama and I must say I admire your humor during this episode


----------



## GeorgiaXplant

@Aneeda72 I can't even imagine what you (and Joey!) are enduring. I admire your strength, your resolve and your sense of humor. I'd have been so frustrated at the very beginning that I'd have torn everybody involved a "new one"!

Here's hoping that Joey continues to improve and can cope with being confined to his room for such a long time.


----------



## Aneeda72

GeorgiaXplant said:


> @Aneeda72 I can't even imagine what you (and Joey!) are enduring. I admire your strength, your resolve and your sense of humor. I'd have been so frustrated at the very beginning that I'd have torn everybody involved a "new one"!
> 
> Here's hoping that Joey continues to improve and can cope with being confined to his room for such a long time.


Thanks.  @GeorgiaXplant 

Yes, that is the worry.  It would be hard for anyone to stay in one room for so long, but for a mentally retarded person who really doesn’t understand what is happening it must be horrific. 
Luckily he has the master bedroom in the house so his own bathroom.  We got him a computer and it loves it, and he has his tv with Netflix, and music player.  But he can not read.  He does not yet have a phone to call us.  We will fix the phone issue, of course.

He does not have a hospital bed.  At the hospital, the bed was set completely up so he was sitting up to sleep, as it is easier to breathe sitting up as shown in the photo.  At home he will be laying down to sleep.    He also has very severe sleep apnea.  There is no room in his room for a recliner or I would buy one for him.

I am really worried about his oxygen levels, the abilities of the group home personnel to care for him, and the effect of Covid on him in general.  The only good thing in this nightmare, is, like so many others were, he is not locked up by himself in a hospital without family to monitor what’s happening.


----------



## Aneeda72

Shero said:


> Really nice to see Joey looking so good Aneeda. Bet you’re one happy but very tired Mama and I must say I admire your humor during this episode


Humor is all that keeps us going.  I am mentally exhausted this morning.  And I still have a sick daughter to worry about who just got a out of network bill for 16,000.   And she is totally freaking out.  Long distance parenting of sick adult children is not to be recommended, but at least she understands her issues.  @Shero


----------



## Sliverfox

To address the lack of a   hospital bed ,, can you  find one of those  wedge pillows?

Will the   home he is in ,let you  come in more often to check on him?

I suppose they aren't set up to have a family memeber stay  with him?


----------



## GeorgiaXplant

@Aneeda72 yes to the wedge pillow...if not that, then multiple pillows to elevate his head above his heart/lungs.


----------



## Aneeda72

GeorgiaXplant said:


> @Aneeda72 yes to the wedge pillow...if not that, then multiple pillows to elevate his head above his heart/lungs.


Yes, get more pillows on my Walmart list, thanks


----------



## Aneeda72

Sliverfox said:


> To address the lack of a   hospital bed ,, can you  find one of those  wedge pillows?
> 
> Will the   home he is in ,let you  come in more often to check on him?
> 
> I suppose they aren't set up to have a family memeber stay  with him?


No we can not stay at the home and while I thought of bringing him to the apartment, I can not be awake 24/7 and the group home does have an aid awake at night.  I also requested home health to send someone in to check on him.  Have not heard back on that yet.

Because we are not just family, but his legal guardians, we will be able to enter the home and check on him.


----------



## SeaBreeze

@Aneeda72, just read through this thread.  Very sorry to hear about your son and all you two have been through.  You're a good mom, I know you're very stressed and weary of all this.  I hope Joey continues to get better each day and can be out of serious danger.  My thoughts are with you both, stay strong...hugs.


----------



## Della

I think the home should provide a hospital bed.  Joey would probably always benefit from one with his weight and sleep apnea problems.  Now's the time to ask for one since they know they're in trouble.


----------



## Jules

You must be burned out - physically & mentally.  Even when Joey is being a little stubborn, you manage to get through to him.  I believe you said before that he has a positive personality.  It helps.  Being back in his home, they know him.


----------



## chic

Peace @Aneeda72.


----------



## Aneeda72

Della said:


> I think the home should provide a hospital bed.  Joey would probably always benefit from one with his weight and sleep apnea problems.  Now's the time to ask for one since they know they're in trouble.


It’s not the home that provides or buys medical equipment.  It’s Medicare and Medicaid insurance that would provide it.  Before it could get approved, he will be over Covid.  We couldn’t even get one of these beds for our total care son.  When he got hurt, and sued his former group home, we used the proceeds from the lawsuit to buy him one of these beds.

Even if we footed the bill for one now, and we can’t cause we have given both our daughter and oldest son cash from the sell of the house for their issues, we couldn’t get it delivered cause he has Covid.  We only had so much money .

Recently, about a month ago, the group home couldn’t get funding for a new tube and mask for his cpap machine.  Instead of contacting me, they risked him dying for a 10 dollar piece of equipment. Stupid people.

Finally they sent out an email asking if Joey had enough money to pay for it himself.  I immediately responded I would pay for it.  It was ordered from Amazon but I was not billed as he had the money to pay for it himself.  It drives me crazy!!  His doctor said he had the worst case of sleep apnea she has ever seen.  He risks death every time he sleeps without the machine.

The challenge was they could not get a prescription for the tube because, unknown to them, his sleep doctor retired.  His regular doctor would not order the tube because he is not a sleep doctor.  OMG, it’s all a shit show.  (I’ve have this problem with my heart doctors.  My rhythm doctor will not help with my heart failure.  I have to see the pump doctor for that-meanwhile who cares if I die waiting for appointments.  Not any doctors, that’s for sure.)

A lot of parents will not pay for their adult child’s medical treatment.  (There are people on SF who have written, they will not financially help their adult children.  I fail to understand that attitude, but not my business.). The group home could not possible absorb all these costs for all their clients.

Anyway, it is what it is.  @Della


----------



## Aneeda72

Jules said:


> You must be burned out - physically & mentally.  Even when Joey is being a little stubborn, you manage to get through to him.  I believe you said before that he has a positive personality.  It helps.  Being back in his home, they know him.


I am not burned out, but between him and my daughter I have a great deal of chest pain.  My heart always reacts negatively to stress and it’s a lot of stress.  But  the angina is not fun.


----------



## Chris21E

Maybe an electric shaver would help, also some vitamins would improve how he feels, B12 for energy.  Soup and fruit juice does feel good when tired  

Sending Joey and Aneeda much love and healing 

*Treatment for post-injection inflammation*

Cold packs. These help reduce swelling, itching, and pain.
Over-the-counter pain medicines. These help reduce pain and inflammation.
Prescription medicine. These treat infections.


----------



## Aneeda72

Chris21E said:


> Maybe an electric shaver would help, also some vitamins would improve how he feels, B12 for energy.  Soup and fruit juice does feel good when tired
> 
> Sending Joey and Aneeda much love and healing
> 
> *Treatment for post-injection inflammation*
> 
> Cold packs. These help reduce swelling, itching, and pain.
> Over-the-counter pain medicines. These help reduce pain and inflammation.
> Prescription medicine. These treat infections.


I am sure he does use an electric razor


----------



## Aneeda72

Joey looked better yesterday at home.  Got him a cell phone at Walmart will give it to him today.  It should make him very happy.  Got him a bed back pillow which is very soft and raises him up in the bed.  He liked it really well.  He does not want a bed wedge.

He will be on oxygen until November 9, when he will see his doctor and be test for Covid.  That will be 21 days of isolation in his room, not 14.  14 days is for non delta, delta patients can be contagious for 21 days, despite those two vaccinations.

The staff at his group home are dressed like they work in a Covid ward all the time .

At the hospital the staff put the gear on when they entered his room, took it off when they left.  There is no negative air pressure situation like shown on tv.  His last nurse was extremely heavy set.  I found that strange since the doctor said the highest danger to Covid patients was weight.  The PPE gown only fit around the front of her, the back of her was uncovered.  She wore a mask and a plastic clear face cover, which as we all know, still gives Covid access to her eyes so it’s useless.

I wear a face mask, that’s all.  I am 75, no one says perhaps I should “gear up”.  That’s all the hospital required me to wear when I visited him there.  If it were that dangerous I would have been required to wear the full PPE.  Because when I leave, I walk through the entire hospital, get on the elevator, and ride it down, and walk out.  Supposedly shedding the virus that clung to my clothes and hair with every step.

I am beginning to think the rest is “all smoke and mirrors”.  How can there be one set of contagion rules for the medical staff and a different set of rules for visitors?


----------



## Sliverfox

Glad  to read that  things are  looking better with Joey .
That the staff is finally realizing  more precautions are needed.

Do  you think that COVID treatment  ,, care methods are still in the learning phase?


----------



## Aneeda72

Sliverfox said:


> Glad  to read that  things are  looking better with Joey .
> That the staff is finally realizing  more precautions are needed.
> 
> Do  you think that COVID treatment  ,, care methods are still in the learning phase?


I don’t know, but the medicine they gave him really helped and put him on the road to recovery plus the vaccines.  I saw Joey this morning and he looks really good.  He was up out of bed, sitting on the floor in front of his computer, and listening to music.

Such a relief, plus he had shaved and looked like he had a bath.  I do think he is on the road to recovery.  When my older son had Covid (not delta) it took him much longer to feel better.  Of course, their were no vaccines at that time and no medicine.

There are large public service signs all over Utah which say-get vaccinated and avoid the ICU.  So true for many, and true for Joey.

I bought a case of Gatorade with protein for Joey yesterday and asked the staff to make sure he drinks one, once a day.  I was happy to see him sitting on the floor and drinking one.  It might not help, but it can’t hurt.  He said his stomach felt better as well.  Also bought him a case of diet Dr Pepper.  His favorite soda.  He asked if o was bringing him lunch tomorrow as usual.  Yup.

I read that staying hydrated is important for healing from Covid.

Told Joey he was getting a cell phone as soon as his brother came over and set it up.  It’s a flip phone and I reached my limit of ability turning it on and charging it.  . Joey asked how long he had to stay in room and I told him 21 days, till November 9th.  He asked how long he had to wear the oxygen, until November 9.  I resent staff does not answer his questions.

All the guys are home.  There are four including Joey and they are staying in their rooms for most of the time, although they can leave their room and go into the kitchen.  The staff on duty is sitting on the sofa, dressed in all the PPE, talking on the phone to a friend.  

Most of the staff now are refugees who speak little english.  I dislike the not speaking English part.  Oh, well, the important thing is he is MUCH better and I can relax a little bit.


----------



## Tish

@Aneeda72 I am so happy for you and Joey, such good news.


----------



## Sliverfox

I wonder if they can read English & understand it?


----------



## SeaBreeze

Happy to know that Joey's doing better.


----------



## Shero

You and Joey are doing so well Aneeda. You're a strong lady and a loving Mom


----------



## AnnieA

So glad he's home!  Prayers for a speedy,  complete recovery.


----------



## Sunny

Happy news, Aneeda.


----------



## Aneeda72

Sliverfox said:


> I wonder if they can read English & understand it?


I don’t know, but I have to repeat stuff to them as much as I have to repeat it to Joey .


----------



## Devi

You could also type the instructions in a computer program and print it out ... then just tape it to the wall. It could help.


----------



## Aneeda72

Oldest son came over and set up his phone.  He presses 2 for me, 3 for dad, and 4 for his brother.  He learned the numbers right away, but didn’t understand how to press hard enough.  I am worn out with worry, I wanthim to be able to use the phone so he can contact us, but it will take time for him to learn apparently.  But he will get it.

Then I had to explain it to the staff before I saw Joey and after I saw Joey how to use the phone.  

When I got there she said he was asleep and I say, well, I am waking him up.  Then she says good cause I made his dinner but he was sleeping so I didn’t wake him.    Well, you can feed him after I explain the phone to him.

He was asleep and he had a huge fan on going full blast in his face.  Told him that might not be very good thing to do, but his room was warm.  Anyway, got home texted his sister to call him.  He didn’t answer.

Yup, forgot to show him how to answer the phone.  . Oh well, I thought.  We called, he didn’t answer.  We tried again and yay, he answered.  Staff must have shown him.  Then had his sister call him and he answered so all is good now.  I feel so much better now that I have a way to contact him at any time.

Hospital never found his glasses so we will have to buy him a replacement pair when he is better.  Medicaid won’t replace them.


----------



## Aneeda72

Devi said:


> You could also type the instructions in a computer program and print it out ... then just tape it to the wall. It could help.


I doubt they can read English and Joey can’t read, of course.  Their spoken English is very broken and most of them are somewhat shy and very quiet spoken. They dress in their native dress, but I have no ideal what country but, hmm, covered heads, long colorful dresses.


----------



## Devi

.


----------



## Devi

Aneeda72 said:


> I doubt they can read English and Joey can’t read, of course.  Their spoken English is very broken and most of them are somewhat shy and very quiet spoken. They dress in their native dress, but I have no ideal what country but, hmm, covered heads, long colorful dresses.


Ah, okay.


----------



## Della

If you can find out what language they speak, you can enter your instructions in English and "Google Translate" will put it in their language for you to print out.  Who knows?  They might find out things that will help Joey and all his friends.

Gosh, I feel sorry for all concerned.  The patients, who are so helpless to do for themselves, and the aids.  It must be awful to be learning a new job while only understanding half what is being said.

Then there's the hospital staff for whom I have no sympathy.  Who just tosses something as important as glasses in the trash?  No matter how busy they are they could have, at least, dropped them in a lost and found box.


----------



## Jules

You’re a strong woman co-ordinating all your family.  Great news about Joey’s progress.  The vaccine seems to have served its purpose of making the Covid less serious.


----------



## Aneeda72

I saw Joey today’s and took him lunch, but he’s sounds a bit congested-maybe a cold, I hope.  He said he feels really good.  I told him this is the last time it will come over.  He is doing better and I need to isolate and get tested, eventually, so I can have thanksgiving with my older son and his SO.  His SO will not attend dinner if we are all not tested even though we have no symptoms.

Then Joey calls me  and says he is hot.  . (I did notice yesterday his room was on the warm side.). I asked him to have his temp taken.  He said no, he’s fine.    They do keep the house warmer because Joey hates to be cold and get cranky when he is cold.  And he was taking a nap so probably under the covers as well.  

It is so hard to balance everyone’s needs and requirements


----------



## PamfromTx

Sending good thoughts to you and Joey, @Aneeda72.


----------



## Chris21E

So glad and happy for you sharing such important information, everyone is different of course, and no guarantees but any real-life light on this issue is so helpful.

Thank you, Aneeda...


----------



## Jules

Aneeda72 said:


> It is so hard to balance everyone’s needs and requirements


It really is.


----------



## Tish

One day at a time, and one thing at a time, and take a deep breath.


----------



## Aneeda72

Had Joey checked by doctor today as he is very congested.  He’s fine, just part of Covid.


----------



## Ruth n Jersey

@Aneeda72 I'm happy the doctors are keeping watch over your son . I can only imagine how tired and stressful this must be for you, Your needs are important too.


----------



## Aneeda72

Great news, oldest son who sat in the hospital with Joey for 4 1/2 hours in the ER tested negative for Covid today.  Such a relief.  Remember after exposure to Delta you have to wait 7 days for a valid test.


----------



## Kaila

Aneeda72 said:


> Great news, oldest son who sat in the hospital with Joey for 4 1/2 hours in the ER tested negative for Covid today.  Such a relief.  Remember after exposure to Delta you have to wait 7 days for a valid test.


That test result is the best gift for your birthday!


----------



## Aneeda72

Kaila said:


> That test result is the best gift for your birthday!


Amen to that!!


----------



## mellowyellow

Most people would never take the risk of visiting a patient in a Covid ward, you are a very courageous woman in my eyes Aneeda and hope your birthday is a happy one.


----------



## Aneeda72

mellowyellow said:


> Most people would never take the risk of visiting a patient in a Covid ward, you are a very courageous woman in my eyes Aneeda and hope your birthday is a happy one.


Thank you, but, you know, he is my son, I’d do anything for him.


----------



## Aneeda72

He seems to be doing fine and says he feels better everyday.  . Still sounds congested.  . He had Apple Jacks for breakfast today.  OMG, when he is well, completely well, I am, going to have a serious talk with the group home.  I told them to give him eggs for breakfast, a protein for the love of God.  Then, if he insists Apple Jacks.

Apple jacks are the same as the plates of chocolate chips cookies that they have been giving him for breakfast.  No wonder he’s gained a lot of weight.  . The stupid people will make him a diabetic.


----------



## SmoothSeas

PamfromTx said:


> Sending good thoughts to you and Joey, @Aneeda72.



me, too...

tell Joey that your forum friends are thinking of him...


----------



## SeaBreeze

Glad he's feeling better Aneeda, and I agree, he should be eating real foods and getting real nourishment during this time.  Thanks for keeping us updated, big hug from me to him.


----------



## Chris21E

So glad Joey is feeling better, we are not letting up for either one of your family, Thank you for letting us know.

Will Joey eat oatmeal, with fruit ?worth a try...


----------



## Aneeda72

Chris21E said:


> So glad Joey is feeling better, we are not letting up for either one of your family, Thank you for letting us know.
> 
> Will Joey eat oatmeal, with fruit ?worth a try...


Yes, he likes oatmeal.  The issue is not just Joey, it’s the staff.  I thought about this a lot last night.  The staff is, hmm, trying to explain without mentioning race, or age, or religion is difficult because this is a component of the problem.

The staff comes from an area and culture which gives deference to males.  The laws of the USA have been explained to them in regards to what Joeys choices are.  While someone raised here would have greater understanding of those laws and be more flexible in applying them, this group is not.

Plus the staff seems to have no negotiation skills, or does not want to be bothered with the effort. As in once you eat your omelet, you can have a small bowl of Apple Jacks.  This would be acceptable.

Its complicated and I see it’s either beyond their understanding, or its just easier to give Joey what he wants even though it’s harmful to him.  But probably a little of both.  People Down syndrome can be very stubborn and difficult.

Being overweight was a component of Joey getting Covid.  Having the vaccinations saved his life.  So, I think I might need to have the group home’s psychological provider file for a human rights exception in order to set up a diet for Joey and force the group home to comply.  And get a nutritionist involved.

But the nutritionist first, to write a diet for Joey for the people at the group home to adhere to, as I suspect the problem is pure laziness on their part.  Plus he gained all this weight when the now Assistant director was the house manager.   Ugh just ugh. I can not stand this guy and they promoted him. 

it’s very complicated and at my age I admit I just don’t want to do it, but if not me who?


----------



## Kaila

I agree of course you are right, all about Joey and his foods, etc.
And you are right also, that, at this point, you _cannot do everything you would like to do for him._

Is it possible that he would eat one egg, first, in order to then be rewarded with (a smaller amount) of the Apple Jacks?
If so, then *possibly, *if they won't prep it, then you could hard-boil eggs, to be used once or twice a day, in that way?
Though I know, it might not work with dear Joey, and also might not be easy, to get them to follow-thru on it.

The oatmeal with fruit is another good idea too, especially with the fruit visible on top, for him to see it, such as applesauce.
And again, he could be given a small portion of the Apple Jacks for rewards, *if* that made it easier for him and the staff, to actually do.

Oatmeal is another thing that you could possibly fix, and then they just microwave warm it a bit.

Just ideas.
I understand it is a big, difficult problem, without any easy or quick fixes, _for sure!!_


----------



## Aneeda72

Kaila said:


> I agree of course you are right, all about Joey and his foods, etc.
> And you are right also, that, at this point, you _cannot do everything you would like to do for him._
> 
> Is it possible that he would eat one egg, first, in order to then be rewarded with (a smaller amount) of the Apple Jacks?
> If so, then *possibly, *if they won't prep it, then you could hard-boil eggs, to be used once or twice a day, in that way?
> Though I know, it might not work with dear Joey, and also might not be easy, to get them to follow-thru on it.
> 
> The oatmeal with fruit is another good idea too, especially with the fruit visible on top, for him to see it, such as applesauce.
> And again, he could be given a small portion of the Apple Jacks for rewards, *if* that made it easier for him and the staff, to actually do.
> 
> Oatmeal is another thing that you could possibly fix, and then they just microwave warm it a bit.
> 
> Just ideas.
> I understand it is a big, difficult problem, without any easy or quick fixes, _for sure!!_


I have contacted the social worker to set up a meeting and a plan.


----------



## Kaila

Oh gosh, @Aneeda72 
I just read again (_my 3rd time )_
*your* post, above,
and I see that you _did_ include in it , the very same or similar idea,
that I suggested, about _negotiating, the egg/ appleJacks with him....._


----------



## Kaila

Aneeda72 said:


> I have contacted the social worker to set up a meeting and a plan


Excellent idea and action, for you to take.  That's good.


----------



## Sliverfox

Aneeda,, do you have someone who will become his advocate when you are not longer   on earth?

Perhaps talk  to your  son that was with Joey at the hosptial to get different ideas on handling the  situation.

Wondering why there aren't more  nutritionist  working at   care homes or offering services to the public.
So many actors, models or wanta be models  who think they are overweight,,might spend money  for  that service.


----------



## Chris21E

I found ultra incompetent is always put in charge, you will find a way.

So much to deal with.


----------



## Tish

Aneeda72 said:


> I have contacted the social worker to set up a meeting and a plan.


So happy for both of you


----------



## Aneeda72

I had an interesting talk with the group home manager yesterday.

They have not been cooking, instead they are ordering food in cause it is “safer” .  It’s not, of course.  This is the reason for the high carb diet pizza etc.  I told her they could order from subway and get much healthy food like salads etc.  She said they might start making sandwich’s at home.

Joey was able to get out of his room, go to the refrigerator, and find his frozen egg sandwiches that I bought him.  They are 34% protein and 1% carb.  I told him, and her, he could have a carb with them, piece toast, bagel, small bowl sweet cereal, etc.

I asked why he was out of his room and she said they make him put on gloves and mask.  He doesn’t need gloves I said.  Then she dropped a bomb.  Two other clients in the home have Covid.  .  They are vaccinated as well.  She says they got Covid from walking through the house and touching the door knobs and such.  I did not disagree.

But that’s not how they got it.  If they got it from Joey, and it’s assumed they did although they work at the same work place, they got it from the air in the house.  None of them wore masks in their rooms.  Delta is very contagious as an airborne disease.  Trapped in the house together, no open windows, all breathing the same air 24/7.  That’s how they caught it.

I also addressed the question of where Joey’s things are.  Lots of his things are missing, most of his clothes are gone, and even a couple of pieces of furniture are gone.  His dresser is broken.  His room was rearranged and has to be put back as I was before.    Once he is well, I will have to deal with all of this and replace his glasses and buy a new dresser.

Then she says he has over three hampers full of dirty laundry.  Why they have not washed it, is beyond me.  We will have to pick it up and get it washed here.  Staff, apparently, is doing nothing at all.  Nice job, wish I had it.

I mentioned I found the weekend aide sitting on the sofa, doing nothing but talking on her cell phone with no mask on.  . She should not be surprised if she gets delta. The group home manager says that’s not supposed to happen. -no mask.  . Whatever.

I am so frustrated.

But, Joey says he is improving and I think he is.  His oxygen is supposed to come off on Thursday and we will see how he does on room air.  He sees the doctor on the 9th, and gets retested to see if the covid is all gone.  Hopefully, it is.  Then we will work on his losing weight and finding what’s missing from his things.  And get the sheriff involved if necessary.


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## Chris21E

Pleased to hear Joey is improving...Now about group homes hate them, Rescued a veteran from one, when taken to the medical care they wanted to know when he broke his leg, they abuse them...So they are the pits, they lose things and steal


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## Shero

I am sorry about the situation at the group home Aneeda, but so glad Joey is doing better. Bless him


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## Tish

@Aneeda72 I can imagine your frustration is through the roof by now.
It really does sound like none of the workers gives a damn.


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## Aneeda72

Tish said:


> @Aneeda72 I can imagine your frustration is through the roof by now.
> It really does sound like none of the workers gives a damn.


Yes, I was going to email the group today but I am so , I did not do it.    I need to get a little “cooler” in my temperament.  Imagine how bad it is for those clients whose parents show no interest at all after their adult children enter these places.

Or the parents of adult children who drop the elderly into nursing homes, and never or rarely check on them.  Life becomes horrific for those clients.


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## Kaila

At least you know that you bring Joey so many joys into his life, by all of the things you do for him, and you answer him when he needs to talk to you.  That phone, etc.....


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## dseag2

Aneeda, I've read through your thread and I'm so sorry about your experiences with the group home.  I am, however, happy to hear that Joey is improving.  We are all hoping that Joey's oxygen comes off on Thursday as promised.  Please keep us updated.


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## Tish

Aneeda72 said:


> Yes, I was going to email the group today but I am so , I did not do it.    I need to get a little “cooler” in my temperament.  Imagine how bad it is for those clients whose parents show no interest at all after their adult children enter these places.
> 
> Or the parents of adult children who drop the elderly into nursing homes, and never or rarely check on them.  Life becomes horrific for those clients.


Absolutely!


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## Kaila

Is Joey less congested?  And how did his Thursday check-up go?


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## Aneeda72

Kaila said:


> Is Joey less congested?  And how did his Thursday check-up go?


Thanks for asking.  Joey sounded like his old self yesterday so I am starting to think that he will be fine.  He sees the doctor on the 9th, then we will know.  I contacted the director of the group home with my concerns and she is supposed to set up a meeting.


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## SeaBreeze

Thanks for the update Aneeda, sounds good.  I hope he continues to feel better as time goes by.


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## Jules

Glad that Joey is on the mend.  You’ll work things out with the residence.


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## Aneeda72

Received devastating news concerning Joey.  Heartbroken.


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## Shero

What happened Aneeda?


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## Pinky

Aneeda72 said:


> Received devastating news concerning Joey.  Heartbroken.


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## Devi

Aneeda72 said:


> Received devastating news concerning Joey.  Heartbroken.


What happened? I thought he was on the mend.


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## Aneeda72

Shero said:


> What happened Aneeda?


He said Joey doesn’t need heart surgery at this time.  Joey got real excited and happy.  . He did not understand what he said next.  He said his lungs were extremely damaged from Covid so even if he needed surgery now, he could not have it.  He would die. 

He said we had to wait 6 months for his lungs to heal and then see where he was.  He said that his lungs would be badly scarred, even after healing.  He said if he gets chest pain to take him to the ER, cause it might be a heart attack, but there could be no surgery.  He implied he might need to have portions of his lungs removed.

I just cannot stand the possibility that another son might die before I do.  Life can be so cruel.  . It’s so hard to wrap my mind around.  I am so sad.


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## Sliverfox

O,, Aneeda,, sending cyber hugs


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## chic

Hugs.


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## officerripley

Oh no no, Aneeda, so sorry. Sending hugs and thoughts your way. Oh, boy, I'm so sorry.


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## Devi

I am so sorry to hear this. Hopefully ... well, hopefully things get better.


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## Shero

Aneeda72 said:


> He said Joey doesn’t need heart surgery at this time.  Joey got real excited and happy.  . He did not understand what he said next.  He said his lungs were extremely damaged from Covid so even if he needed surgery now, he could not have it.  He would die.
> 
> He said we had to wait 6 months for his lungs to heal and then see where he was.  He said that his lungs would be badly scarred, even after healing.  He said if he gets chest pain to take him to the ER, cause it might be a heart attack, but there could be no surgery.  He implied he might need to have portions of his lungs removed.
> 
> I just cannot stand the possibility that another son might die before I do.  Life can be so cruel.  . It’s so hard to wrap my mind around.  I am so sad.



Oh ma cherie, my heart breaks for you. Stay strong which is hard to do now but you must. You have been so brave. My prayers are with you and Joey. 
God Bless.


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## Pinky

My heart aches for you and Joey.


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## Kaila

I am so sorry, as well, Aneeda, for the heartsickness you must be feeling.


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## MarciKS

Aneeda72 said:


> He said Joey doesn’t need heart surgery at this time.  Joey got real excited and happy.  . He did not understand what he said next. He said his lungs were extremely damaged from Covid so even if he needed surgery now, he could not have it. He would die.
> 
> He said we had to wait 6 months for his lungs to heal and then see where he was.  He said that his lungs would be badly scarred, even after healing.  He said if he gets chest pain to take him to the ER, cause it might be a heart attack, but there could be no surgery.  He implied he might need to have portions of his lungs removed.
> 
> I just cannot stand the possibility that another son might die before I do.  Life can be so cruel.  . It’s so hard to wrap my mind around.  I am so sad.


*HUGS* so sorry! i just lost my mom the 2nd to covid. if u need to talk let me know.


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## SeaBreeze

Aneeda, very sad to hear this news about Joey.  I can't imagine how you're feeling now, sending you and Joey love and warm hugs.  I hope he can get through this, you're both in my thoughts.


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## Jules

So much emotional pain for you.  Hoping that Joey’s new home will give him time to recuperate and become stronger.

Sending many hugs to you and Joey.


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## Chris21E

Much love and hope to Aneeda and Joey...


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## jujube

Oh, Aneeda, you didn't need this!  Keeping you and Joey in my thoughts.


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## Aneeda72

Thanks everyone for your concern for Joey and myself.  It was a rough evening yesterday as I told his older brother and sister.  . With such injured lungs, a cold could be life threatening.  It also explains the bad cough that he has.

We have decided to let him live life as “normal“-not trying to over cautious over where he goes or what he does.  It is never about how long you live, but about the quality of life you have; and we want his life to be good.  Whether it turns out to be a few months or several years, we will impose no restrictions on him; although I’d like to put him in a complete hazmat suit.  

Even without Covid there was never any guarantees for a long life for any of us.

Anyway, he LOVES his new group home.  We are going to get him curtains for his room, and more food .  Some new furniture as some of his furniture is worn and too big for his room.  Since the group home people agreed to buy a second refrigerator for the group home, we have decided to buy a stand up garage freezer as well for it instead of the small box freezer we provided.


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## Aneeda72

MarciKS said:


> *HUGS* so sorry! i just lost my mom the 2nd to covid. if u need to talk let me know.


I am sorry to hear this and so sorry for your loss.

Covid is so awful-even when it doesn’t take a life; it can impact someone’s life forever.  An “unfair” disease for sure.  My oldest son was so upset and said “if he gets Covid again, he will die”.  

And with the new extremely contagious variant that is a possibly.  And with his damaged lungs a simple cold, the flu, pneumonia, or any respiratory disease could be horrific for him.  But there is nothing to do for it; but pretend, to him, all is well.

It might be a blessing that he doesn’t understand.


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## Chris21E

So wonderful Aneeda, living with the unknown is hard, but I just focus on the love. Joey is so blessed to have you, never forget that.

No matter what you are told, hope is always there. I have been given bad news, yet here I am completing another year soon. Love is forever, Joey has that, you do as well....


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## Chris21E

*To all that let their Love Shine *


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## Alice November

I can't think of any words that could express what I would like to.
You are a good and loving mother. Bless you and your son Joey.


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