California on lockdown due to COVID-19 spread

vltsra

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So we are on lockdown essentially all over California. I've been pretty much locked down for a month or so in any case with the exception of my art classes. It's such a worry; I go to the grocery store or pharmacy to pick up some things that my PALS wants or needs, and not everyone is observing social distancing. I had a kid buying a six-pack practically breathing down my neck today in line. I kept my nose and mouth in my jacket and stepped away as soon as I could. I feel a little crazy right now - buying canned goods or frozen things and dried beans. Advice from my husband was if he could walk or drive he would just stock up. I told him he had not been to the grocery store lately. There is nothing to stock up on. Yesterday I felt excited that I scored some yeast and 2 small bags of flour.

His caregiver is still coming over, she is about 4 months pregnant with twins. She told me yesterday she will need to leave us in early June. If I want a break I'll have to find another caregiver, which also concerns me in these circumstances. I guess I have a couple of months to think about that. She's been happily locked down as she is concerned about her pregnancy.

We did not go to the pulmonologist appointment on Monday so I don't know what they would have said to him. He doesn't have a feeding tube; that was my next immediate concern. He is still eating now and doesn't want to talk about it. He keeps telling me he just wants to get well. Maybe I'm thinking too far ahead, but I'm concerned about what I do if my PALS needs hospice care. He is definitely struggling to breathe when he is not on bipap. He is on bipap 24/7. If this drags on, who knows?

As if ALS is not enough. I suppose the lockdown isn't much different from how we have been living lately in any case. I don't mind as long as I can do a few things here that feed my spirit. Just concerned about my PALS.
 

lgelb

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V, can you do some online shopping? That is all I am doing now, and would suggest that for others. Not sure what there is in your part of Cali, but here Instacart (including some pharmacies as well as groceries), Amazon Fresh/Prime/Whole Foods are options. I hate to think of you in any "non-distancing" setting.

The list of cities where InstaCart operates is here. They are usually my go-to for groceries these days, as it is individual vehicles instead of big trucks, and of course you can select doorstep drop-off so you are not in contact.

We can't predict the future, but in all likelihood, if he's still eating normally, he will not suddenly need a tube overnight, and in truth, if he's on 24/7 BiPAP, he may not ever want one. Just spend the time with him, V.

Best,
Laurie
 

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It's such a difficult time V and the situation where you are is different to ours so I can't really say much helpful.

I was included in a teleconference with our state health service yesterday to discuss the strategies being taken and to answer questions. I'm more and more conscious of just how differently things run in each country. Keep talking here if it helps at all.
 

vltsra

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Thanks Laurie and Tillie. I will definitely check out the InstaCart service. I feel as though I have enough food here in the house for about a month now. I've done some additional on-line shopping for things like the mini blinds that need to go into the new bathroom, neoprene gloves (which were sold out at all of the local pharmacies) and wine from my favorite small independent winery :). May need to look at ordering art supplies on line.

It's just hard! We finished the elevator in December and got the van in January with the express purpose of being able to take him places to raise his spirits and avoid having him cooped up here. I suppose I could take him for drives so he can at least get out of the house, but it isn't the same as being able to take him down to the boardwalk in his power chair. I don't know that I would have done anything differently.

V
 

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One thing that came out of the teleconference I had yesterday with our health services was don't use gloves as a prevention for COVID.
Gloves in this situation are more dangerous as a transmitter than hands.
The issue is knowing how to safely remove gloves, and that goes for masks and gowns too. Too often, infection happens when these kinds of PPE are being removed.

Regular handwashing done correctly, not touching your face with your hands, and keeping distance as much as possible have proven to be the safest strategies.
 

vltsra

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Thx Tillie. We actually use the gloves when cleaning him after toileting. Nothing to do with Covid19.
 

lgelb

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If your neighborhood permits, I would go out for "walks" in his chair. There are enough blooms, birds, bees and squirrels now to provide visual interest. And if not, I would get in the van and drive him somewhere he can get some fresh air, without others close at hand. Less popular parks, vistas on the outskirts of neighborhoods and retail centers, bring a little picnic since he eats, I am sure you know good places. Even the boardwalk, if you can get there with everything's being closed and avoid often-touched surfaces.

I say this to anyone who can get out in the open air safely and who does not have a respiratory virus: carpe diem, because things are going to get worse before they get better.
 

vltsra

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Just changed his prescriptions to mail order only. I tried to use Instacart and got many messages saying things were sold out! Glad I've stocked up. I will use them as needed (and as available) for future supplies.

We got out of the house on Saturday. Just in our little cul de sac, but he was happy to be outside. We had a (distanced) chat with a couple of our neighbors. I've been out walking. Cooking up the fresh food first and I told my PALS he may just have to eat what I give him under the circumstances.

ALS had already put us a little on lockdown so it's not so different for us. It has to be hard on the children. Hope everyone is staying safe.

V

One more thing - it was raining this morning, stopped now. I went outside to put in the recycle bin. The air smelled and looked so fresh and clean! Like when I was a child.
 
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EricInLA

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If you don't want to risk going out, I bet there are local church/temple groups who will go pick up fresh groceries for you and bring them to your door. You can leave cash at door or do PayPal or Venmo etc. We have a few groups around here who are doing that. One of them is a WhatsApp group, but I know there are others because I see them on local news reports.
 

lgelb

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Did you try Amazon Fresh/Prime Now/Whole Foods (all part of the same thing, really)?
Enjoy some more fresh air! I know what you mean. Also, apart from Eric's great suggestions, some people on NextDoor are posting people who can help, on a map.
 
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