My son Joey and his COVID-19 journey

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.
 

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.
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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.
 
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.
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Ah, okay.
 
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.
 
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
 
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.
 
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...
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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? 🤦🏻‍♀️
 


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