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Related: Editorials & Other Articles, Issue Forums, Alliance Forums, Region ForumsMy daughter lives in a group home
and comes here every Tuesday to snuggle and watch TV with me. She functions emotionally like a toddler, and she knows when Tuesday comes around because she rushes to the front door of her day program to look for me. She loves me and slobbers like a puppy.
She spends her day with a couple of hundred other disabled adults. They are not crowded, and there is a nurse on site. The clients are sent home if they have a fever. They do go out into the community, to movies and restaurants and malls, but I don't know if these outings will continue.
Her home for the past seven years has been a nice house not too far from us which she shares with two other disabled women and 24-hour staff.
Every other Sunday, all three ladies plus staff come to our house for dinner and visiting. These ladies are intellectually disabled and cannot be expected to follow safety precautions like covering coughs and sneezes. The Sundays at our house are the only time they visit friends--for we are their friends--and they all look forward to it enormously, as do we.
I am 73 years old with serious lung disease (one lung was removed years ago), and I am in a position to stay home virtually all the time.
Coronavirus has shown up in our county in PA, and schools are being closed.
My heart is breaking.
getagrip_already
(14,825 posts)so far, no deaths have been reported in anyone under 10, and even up to about 50 the death rates in otherwise healthy people are miniscule.
They get the virus, they just don't get sick enough to be hospitalized. She will be fine.
But you are at risk. Is your concern that you will have to stop the visits? If so, I can certainly sympathize.
You can minimize your risk by wearing an n95 mask while they visit if you feel any of them are or could be ill, and wipe everything down with disinfectant when they leave.
Otherwise you may have to shelter in place for now.
Stay healthy. Stay well.
FM123
(10,054 posts)Yes, there are many folks out there with disabilities that are not able to follow safety precautions and it is heartbreaking indeed to think of what that might mean for them.
Squinch
(50,993 posts)getagrip (the first post) makes an important point. Maybe the answer is to forego visits with the ladies until this passes.
A temporary separation is worth your health.
If your daughter gets a fever, will they send her home without consideration of your condition?
cyclonefence
(4,483 posts)We are so fortunate to have very, very good care for her. My husband and I just got too old to take care of her, and it killed us to move her out at age 28, but it was the best thing for all of us.
Yes, it will be better to have a brief, painful separation than to risk my life, but she won't understand. I've got to woman-up and just do this.
Squinch
(50,993 posts)the world when you get too old to take care of her.
But it strikes me that it is the only responsible decision you can make to secure your child's future.
As far as the immediate future goes, I am sorry. But this too seems like the best way to ensure that you are around for her for years to come.
Can you do skype and maybe have a little prize for her to open from you every day for a few weeks so she knows you aren't forgetting her?
MLAA
(17,318 posts)When I was a kid I was in the hospital every summer. And one very kind lady gave me a bag of prizes that I could choose one from every day to open! It was very nice.
Squinch
(50,993 posts)Hortensis
(58,785 posts)Perhaps you could have dinner together that way? So they'd know you hadn't disappeared?
demigoddess
(6,644 posts)such care for her sometime soon. I'm 71 husband 75. Hope we do as well as you have. Keep yourself safe and alive, for her.
cyclonefence
(4,483 posts)to be in. What decided us that it was time was when I was having treatment for cancer and just had no energy to care for her. It occurred to us that the worst way for this all to end would be for her to find us dead and be unable to get help or understand what had happened. We wanted to find a place for her while we were healthy enough to be sure that she would be well cared for--this is definitely not a decision you want to make during a crisis. I hope you are investigating now and can take your time in finding the best possible situation for your child. My heart is with you.
TEB
(12,872 posts)Shanti Mama
(1,288 posts)This is an impossible situation for you. She needs you to stick around. Maybe that's the deciding factor?
stopdiggin
(11,348 posts)are probably both at the lower end of exposure risk. It sounds like you go out into public minimally, and she little at all (and I certainly wouldn't advocate that the little interaction she has be curtailed). And your daughter has the advantage of being monitored by professionals, so they can pick up on any problem pretty quickly. They'll be watching very carefully, particularly now, and particularly in this population. Don't stress out here! I think you're both pretty low risk .. and you're actually in pretty good shape. Take sensible safety precautions .. and then enjoy one another as much as you can!
-- -- -- --
Boomer
(4,168 posts)There's a difference between low-risk for contracting a disease due to exposure opportunities, and low-risk for outcome after catching it.
Yes, the daughter may be at low-risk for a serious bout of corona-virus due to age and health. But even if the OP is at low-risk of contracting coronavirus, she is in a very high risk category for outcome due to age and medical conditions. She needs to significantly reduce her chances of exposure because she can't afford to get coronavirus -- it could easily be fatal.
stopdiggin
(11,348 posts)concerning the elder's health. That wasn't my focus (and perhaps should have been) However, if you are recommending that this mother now cut off contact with her daughter .. "needs to significantly reduce her chances of exposure" .. I would still deem such measures cruel, and overly dramatic.
We make trade offs. In this family's special circumstances (and they are somewhat unique .. my answer would be quite different if the daughter were a functional adult.) .. I would maintain normalcy and contact as my priority, until forbidden such by medical professionals. But I appreciate your opinion .. and your correction to my original post.
-- --
Boomer
(4,168 posts)The OP can initiate a few weeks of reduced contact and temporary sadness vs. a permanent absence from her daughter's life.
I'm in the same category as the OP, although not quite as bad. I'm 65 with compromised function in one lung (but not completely gone). I'm curbing my outings to only the most necessary, keeping my distance from people, and at work I'm staying in my cubicle and interacting as little as possible with co-workers. This is temporary, not a life-style change, and it's worth it to reduce the risk of getting ill or bringing illness home to my wife, who is even more health-compromised than I am.
stopdiggin
(11,348 posts)but insist (or advocate) that this mother stop interaction with her special needs daughter?
And of course the likelihood of this having any resolution in "a couple of weeks" is .. beyond laughable ..
Gee .. I'm glad we got you on board to sort this all out for us!
On second thought .. I don't think your opinion is of a great deal of value after all.
But thanks for chipping in!
-- --
Boomer
(4,168 posts)The OP carefully detailed the behaviors that were part of her concern. Her daughter and the other group home residents weren't capable of understanding why they couldn't hug or touch someone, or the importance of hand-washing or coughing and sneezing away from people.
When I go to the office, I don't have to worry about someone rushing up to hug me. We've had COVID-19 protocols in place for two weeks now, suspending travel and face-to-face meetings. With a staff of fewer than 10 people in a spacious office, we're pretty separate already. For now, our region hasn't had any reported cases, but we're all prepared to work from home as soon as there is any credible reason to do so.
stopdiggin
(11,348 posts)But not just yet. And still, you're more than ready to step in and run someone else's life ....
Oh .. and that wasn't snark .. that was outright disparagement.
hamsterjill
(15,223 posts)I dont know the right answer.
I just want you to know that I am very angry that people like you are being put in situations like this with no good answer. I dont remember any panic over the Ebola situation in this country and I feel that was because we had an adult in charge in Obama.
I have ZERO confidence in Trump and I feel I have a right to be angry over his incompetence. I know this does nothing to help the situation. Im merely sharing my thoughts.
I wish you peace and wisdom so that you will be comfortable with whatever decision you make as to going forward.
Kali
(55,019 posts)I think there were even a few bannings over it all.
snowybirdie
(5,233 posts)You are the most vulnerable in this case. Let the ladies visit when this is over. They need you. Perhaps their caregivers can teach them the safety practices? Good luck!
dewsgirl
(14,961 posts)my heart breaks for you.
Demovictory9
(32,472 posts)CatMor
(6,212 posts)maybe you should stop until this has passed. It would be better for all in the long run so you will be around to continue being with your daughter. It will hurt for a while but will be best for all. I admire what you do as it is not easy.
iluvtennis
(19,868 posts)bronxiteforever
(9,287 posts)calimary
(81,440 posts)And at its most basic, thats all you can do.
Kali
(55,019 posts)see about setting up video calls. you can even still have "dinner" all together with a little planning you could even eat the same things.
Karadeniz
(22,564 posts)pnwmom
(108,990 posts)on FaceTime. That's the best part of new phones, in my opinion.
But in this case maybe an iPad or something similar would be even better.
cyclonefence
(4,483 posts)and we are going to try video phone calls. In addition, we'll drop off Sunday dinners, so the ladies will at least know we're thinking of them.
My husband, who is in a little better shape than I am, goes over there and makes Sunday breakfast for all of them every Sunday, and he'll keep that up until someone at the adult day care tests positive. At that point--or if one of the ladies gets a bad cold--we'll stop having them over.
marble falls
(57,162 posts)totodeinhere
(13,058 posts)Frequently wash your hands and avoid going out to places where there are a lot of people in close quarters. And remember that it hits seniors the hardest but a big majority of seniors will survive. But it's not something you want to get.
pnwmom
(108,990 posts)who might spread the virus.
That's what's killing me. We are not to that point yet, but it will come.
I think I'm going to ask my doctor for some Ativan.
Evolve Dammit
(16,760 posts)to you and your family and friends.
Joinfortmill
(14,448 posts)deurbano
(2,895 posts)developmental disability, and is quadriplegic with a speech disability as a result of cerebral palsy. She is 46, and had lymphoma in 2013-14, and spent five months being treated in the hospital...developing her first ever pressure sore (which progressed to stage 4!) in the process, plus had a lot of other complications (needing a feeding tube, etc.). She was first misdiagnosed as having a cold or allergies or reflux because she had a chronic cough, but it turned out the cough was actually due to a tumor crushing her esophagus. Luckily, she never needed radiation (the chemo was VERY hard on her, though, and had to terminated earlier than the regular protocol dictated), but I think this experience has made her even more vulnerable to respiratory issues than many other people who are quadriplegic. I worry a LOT about how this could affect her, and like your daughter, she can't easily follow the prevention guidelines. She's had a bit of a cough on and off for weeks, so she went to the doctor and was told a lot of people have had a lingering cold, and they did blood tests for cancer that were negative and she had no fever... but the cough continues. I'm think maybe she should get a chest x-ray to rule out "walking pneumonia"? At any rate, for all these reasons, I think she's extra vulnerable, but two weeks ago, the doctor thought normal activities and even domestic travel were fine.
My daughter is extremely active in our community. (We live in San Francisco.) She rides BART and the streetcars all the time, goes out to eat at cafes, goes to movies, etc. She's particularly active in Democratic politics as a Ca Dem delegate and a canvasser (she's always one of the lead texters with her one good finger)... and in the domestic workers' rights movement and the movement for longterm care/independent living/self-determination for people with disabilities and elderly people. Four weeks ago, she was in Sacramento for a meeting concerning self-determination for people with developmental disabilities, in Las Vegas three weeks ago for a domestic workers' rights convention, in San Mateo, Oakland, Berkeley and all over SF for various activities (including an event she co-hosted on behalf of the Warren campaign regarding proposed disability-related policies) after that, then flew to NYC with my husband (who took time off work to be her attendant) for a domestic workers' rights meeting, and they got home about 1 am today!!!
While she was in NYC, NY started diagnosing its first cases, then I heard someone diagnosed in Toronto may have contacted it in in Las Vegas... and then on Thursday, my younger daughter's San Francisco high school (I was both a teen mom and now a geezer mom) was closed because a student's parent is being treated for the virus! So, my vulnerable older daughter seems to be a heat-seeking missile for coronavirus hot spots, which may now include our own home! (I think the school district is waiting to see if the student with the positive testing parent is also positive before deciding what to do going forward.) And my 17-year-old is a senior, and now the high school musical she is in may be cancelled, along with the annual dance performance, the prom... graduation?! And college visits for admitted students are being cancelled, too.
Of course, my high school daughter's situation pales in comparison to what some people in the world are experiencing, but it's beyond ridiculous that we don't even know how long the virus has been here, that we've had such criminally inadequate access to testing, that there has been so little advice or any guidelines until the last couple of days. I heard the recommendation now is for those 60 and over to try not to go out much. I'm 65! My husband is 64! More information... PLEASE. My two daughters and I were supposed to go to a bridal shower today. What to do? We decided my older daughter should stay home for the next week or so after the NYC trip (she was supposed to go to a CA Dem delegate meeting in Visalia, but decided to skip that), since she's feeling a bit run down anyway. My other daughter and I will attend. What about my 21-year-old son and the gym... which is right next to the high school that closed? And my son is supposed to go back to university in England in April. Will that even be possible?
This is coming at us fast.
cyclonefence
(4,483 posts)It's a shame to even consider curtailing her active life. We need guidance for people like our children, who may or may not be more vulnerable than others, who simply can't follow the standard safety recommendations (my daughter is very good at covering her nose and mouth *after* she sneezes), and we're obviously not going to get that help from the current administration. Granted, helping people with disabilities (and their families) know how to stay safe is not an obvious concern to the vast majority of the public, but I feel confident that once this was brought to the attention of an Obama (or a Biden or a Sanders) administration, people would have gone to work on it.
I hope we all stay well, and I'm so proud of you and your family.
58Sunliner
(4,392 posts)Brainfodder
(6,423 posts)We've all got folks and/or ourselves we cherish in danger!
The fools in charge really blew it with their BS and too slow to really get on it, but knew that after Puerto Rico.
Control-Z
(15,682 posts)It's going to be difficult but I trust you'll do whatever is best for you and your daughter as you've done that already for her entire life. You've been the kind of hero to your daughter that I wish every disabled person could have.
Do the other two women who share the house with her have family to help them if things become unmanageable?
I'll be hoping this virus never reaches them but that it's brief and mild if it does. Take good care of yourself.
cyclonefence
(4,483 posts)but her housemates are in their 60s. One has sisters, but they live in CA (we are in PA) and the other has only a very old (80s) mother.
We did not want our daughter to feel like we had abandoned her, plus we really love her company. We started being so involved with their house to maintain contact with our daughter, as well as to keep an eye on things--my husband does minor repairs to the house which it takes the agency weeks or even months to get around to, and I snoop a little to make sure everything is clean--but it has evolved into genuine friendship on all sides, and we look forward to our visits with the ladies. Our motivation was, and is, selfish. The benefits were unexpected and fill us with joy.
locks
(2,012 posts)one of the Trump cohorts yesterday on TV said "If your aging parents live with you or nearby and get sick you just keep your children away from them. Put them in another room and do not let anyone go in." I have ten great grandchildren from one to 14 and I was sickened when I thought of them not seeing their grandparents and other family and friends. How would you explain that to a precious 3 year old and who is going to care for them when their parents have to go to work. Worst of all, the patients my home health RN daughter sees every day are the poorest among us, have very small homes and are cared for by their children, grandchildren and neighbors. I have also worked as a social worker in home care and nursing homes and hearing what will probably happen to these dear souls is heartbreaking.
Hekate
(90,774 posts)I am out of words for Trump and his enablers -- what they are doing is deliberate and malicious past belief. The MAGA people are just stupid, and by that I don't mean IQ. Stupidity is a quality a person has to strive for. That's bad enough. But the powerful enablers of Trump -- they belong in the pits of Hell.
TheBlackAdder
(28,211 posts).
I have chronic bronchitis, along with my nephew and my sister has COPD.
These are essential to keep your lungs clear. It fights anthrax, pneumonia, the flu and other infections.
.
orleans
(34,072 posts)the elecampane liquid and 'Lung Tonic'
but they sound like something that would help me. can you share more details (wondering how often you use these--in water?--where you can buy them, etc.)
thanks
cyclonefence
(4,483 posts)I'd never heard of it. I'm not really a fan of herbal treatments--the ones I've tried haven't worked for me--but I will give this a shot. An extra expectorant would be a big help--plus it will get rid of my worms!
cilla4progress
(24,760 posts)and let's hope it's over with speedily.
B Stieg
(2,410 posts)it sounds as though you've given your daughter a lovely life.
That won't be swept aside so easily!
lunatica
(53,410 posts)((((((((((( ))))))))))))
roamer65
(36,747 posts)This is going to hit those in them very badly.
cyclonefence
(4,483 posts)My mother was in a high-end assisted living compound, in the memory-loss wing, and when there was a dangerous snowstorm many of the staff left to go home. Staff at such facilities are underpaid and undertrained, and I doubt that the threat of losing their jobs would stop some of them from abandoning their patients.
roamer65
(36,747 posts)cyclonefence
(4,483 posts)The people who take care of my daughter seem to have been born to take care of people. They are truly special, doing the hardest and least appreciated work in the world. They know how essential they are, not just to the well-being but to the survival of their clients. My daughter loves her caregivers, and I think they love her. I don't know what will happen if the staff abandon their charges. People will die.
At the same time, if I were a professional caregiver, it might become difficult for me to justify maybe endangering my mother or grandmother who lives with me (as is the case with many if not most of the women I know) to care for someone else's child.
FakeNoose
(32,723 posts)Even though you don't go out often you can order masks from Amazon. Not all of them are expensive, and many are disposable and meant to be worn only for a few hours. A few masks are longer-lasting and can be washed in a washing machine or a dishwasher for reuse. (These masks cost more, and they might be harder to find.)
It would be a question whether the disabled women would allow the mask to cover their mouth and nose, even if they don't understand the reason why. If they cannot wear them, you can still wear yours while you're in their company. Good luck to you and God bless!
cyclonefence
(4,483 posts)on herself or anyone else within reach. Masks for me are a good idea, but I think her pulling at a mask with her (always damp) fingers would probably be worse than no mask at all.
Tanuki
(14,920 posts)experience, as they often do for kids in medical settings?
https://www.acco.org/medical-play-kit/
cyclonefence
(4,483 posts)If it comes to it, I'll sure give it a try--those masks are adorable.