Help Mayuri get Caregiving
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Hi everyone. I’m raising funds to pay for private caregiving for my sister Mayuri Saxena, who is suffering from advanced stage ALS (Lou Gehrig’s disease).
Many of you in the advocacy community know her from her effective campaigning that helped pass the Federal “Act for ALS” bill in 2022. We were part of an amazing team of patients with ALS, and their loved ones.
But now that the victory lap is over - like many families stricken with this disease - we’re left scrambling to come up with ways to privately pay for a skilled caregiver.
While we fought and “won” insurance approval on paper - the fact is that in a post-Covid world, home duty nursing pays significantly less than bigger hospitals (which pay up to 3x-4x more than home duty nursing). It’s the simple math - it’s not worth it for quality, skilled nurses to do private home nursing.
Insurance throws their hands up saying, “hey we gave you the approval and are reaching out to every in-network and out-of-network nursing agency.” But month after month, year after year — the result remains that this 24/7 burden gets assigned to my senior mother as the backup caregiver.
My sweet mother, in her mid-70’s, is sometimes on continuous 24/7 shift, having to be at my sister’s bedside to do oral suctioning or tracheal suctioning - so my sister doesn’t aspirate on her own saliva. Or my mother has to be there to administer feedings every few hours, wipe my sister’s eyes and face, massage her paralyzed body, and basically stay every moment just a few feet away because of how critical my sister’s condition is.
A loving mother will give her everything for her child. And my mom is. She took an early retirement from a job she so deeply loved, just because we had no nursing available. She gives her energy and sleep because the staffing is so unreliable and unsteady. And now she’s dipping into her own pockets to pay for the private caregiver we manage to find - and it costs us about $1,200 per week.
That’s right. We have to somehow come up with those funds week after week, for an indeterminate amount of time.
This is why I’ve held past GoFundMes, because of how much help we’ve needed. But now all of those funds are completely depleted. Between trying to pay for caregiving, and other expenses related to caring for my sister in our home-turned-hospital, we are humbly asking for help.
And some may ask - “why’s it so expensive for a caregiver, why won’t insurance cover it?” As mentioned above, the nursing shortage has affected those receiving skilled nursing at home. The skillsets needed are indeed that… skilled. No regular caregiver who can cook, can also perform ventilator maintenance, care for a tracheotomy site, or administer meds & formula via enteral feeding, all while clearing airways through invasive suctioning. Those are highly skilled tasks that are life & death, thus us needing to compensate to attract a qualified caregiver.
I write this before my birthday, a wish that my sister and our family has some much needed relief in a situation that is truly exhausting. We love each other, but we are human and are asking for help.
If you want to donate using another method that doesn’t deduct commission, you can use:
• PayPal to The.Mayuri.Saxena.Trust[at]gmai l.c om (please correct spelling before sending)
• For Zelle or mailing a Check, kindly message me through GoFundMe or the gmail address above
If using the one of the above methods, please include your name in the Notes section so I know who to thank
100% of the funds will deposited in The Mayuri Saxena Trust, which has been created for Mayuri’s benefit.
Thanking you,
- Mayank Saxena
Many of you in the advocacy community know her from her effective campaigning that helped pass the Federal “Act for ALS” bill in 2022. We were part of an amazing team of patients with ALS, and their loved ones.
But now that the victory lap is over - like many families stricken with this disease - we’re left scrambling to come up with ways to privately pay for a skilled caregiver.
While we fought and “won” insurance approval on paper - the fact is that in a post-Covid world, home duty nursing pays significantly less than bigger hospitals (which pay up to 3x-4x more than home duty nursing). It’s the simple math - it’s not worth it for quality, skilled nurses to do private home nursing.
Insurance throws their hands up saying, “hey we gave you the approval and are reaching out to every in-network and out-of-network nursing agency.” But month after month, year after year — the result remains that this 24/7 burden gets assigned to my senior mother as the backup caregiver.
My sweet mother, in her mid-70’s, is sometimes on continuous 24/7 shift, having to be at my sister’s bedside to do oral suctioning or tracheal suctioning - so my sister doesn’t aspirate on her own saliva. Or my mother has to be there to administer feedings every few hours, wipe my sister’s eyes and face, massage her paralyzed body, and basically stay every moment just a few feet away because of how critical my sister’s condition is.
A loving mother will give her everything for her child. And my mom is. She took an early retirement from a job she so deeply loved, just because we had no nursing available. She gives her energy and sleep because the staffing is so unreliable and unsteady. And now she’s dipping into her own pockets to pay for the private caregiver we manage to find - and it costs us about $1,200 per week.
That’s right. We have to somehow come up with those funds week after week, for an indeterminate amount of time.
This is why I’ve held past GoFundMes, because of how much help we’ve needed. But now all of those funds are completely depleted. Between trying to pay for caregiving, and other expenses related to caring for my sister in our home-turned-hospital, we are humbly asking for help.
And some may ask - “why’s it so expensive for a caregiver, why won’t insurance cover it?” As mentioned above, the nursing shortage has affected those receiving skilled nursing at home. The skillsets needed are indeed that… skilled. No regular caregiver who can cook, can also perform ventilator maintenance, care for a tracheotomy site, or administer meds & formula via enteral feeding, all while clearing airways through invasive suctioning. Those are highly skilled tasks that are life & death, thus us needing to compensate to attract a qualified caregiver.
I write this before my birthday, a wish that my sister and our family has some much needed relief in a situation that is truly exhausting. We love each other, but we are human and are asking for help.
If you want to donate using another method that doesn’t deduct commission, you can use:
• PayPal to The.Mayuri.Saxena.Trust[at]gmai l.c om (please correct spelling before sending)
• For Zelle or mailing a Check, kindly message me through GoFundMe or the gmail address above
If using the one of the above methods, please include your name in the Notes section so I know who to thank
100% of the funds will deposited in The Mayuri Saxena Trust, which has been created for Mayuri’s benefit.
Thanking you,
- Mayank Saxena
Organizer
Mayank Saxena
Organizer
Flushing, NY
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