Ask HN: As a caregiver how to achieve things

#1

Post by dumy55 » Sat, Jan 21, 2023, 5:07 AM UTC

I am in mid 30's and last year my partner was diagnosed with a rare life threatening disease. Everything turned upside down, currently things are holding up fine..But I am stuck.

As a immigrant in US I am worried about possible medical bills would like to accumulate some money, but feel my hands are tied.

1. My partner can't possibly work.

2. Changing to high paying job requires quite a effort and because of my Job and caregiver duties I don't have much time left to prepare for interviews

3. I would not be eligible for FLMA in the first year of employment, so not sure if it's a wise decision to change a job.

Asking for suggestions to manage this phase and how to navigate this.

Re: Ask HN: As a caregiver how to achieve things

#2

Post by mpnagle » Sat, Jan 21, 2023, 6:25 AM UTC

I had a fantastic job while taking care of my Dad towards the end of his life. Emergencies would come up that required me to fly to him (he was in Boston in assisted living and nursing homes, I was in the Bay) and the company and my manager were so understanding about it.

I think a job where it's understood that you may have to take a day off with very little notice, or more, will go a long way to everyone's peace of mind, and I found it was possible to find that.

Re: Ask HN: As a caregiver how to achieve things

#3

Post by ZhangSWEFAANG » Sat, Jan 21, 2023, 6:43 AM UTC

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Re: Ask HN: As a caregiver how to achieve things

#4

Post by tomcam » Sat, Jan 21, 2023, 8:01 AM UTC

So sorry. Other than my sympathy, the only thing I have to offer is that a government job might be a good bet. They usually have insane medical coverage, and usually the programming knowledge you need is not exactly state of the art.

Re: Ask HN: As a caregiver how to achieve things

#5

Post by schreiaj » Sat, Jan 21, 2023, 8:15 AM UTC

So, some of this also depends on the implications of the word caregiver. I went through a year in which I was the sole care giver to someone that needed assistance walking most days and some days even with their walker would fall. (Fortunately for us, this turned out to be temporary and they are doing much better now, still some lingering issues...)

If you are providing larges amounts of care daily? Yeah, it's brutal. Between work and helping them I was maybe sleeping 4-6 hours a night and regularly having to deal with emergencies. I don't have a great answer in this case other than lean on family. We couldn't do this, but I know folks who are in similar boats who have had some success here.

If it is more a slow illness, this is the right time to find something stable. I know it's tempting to want to find the eye popping salaries but finding something that covers costs reliably and you can plan is much easier. Stable may not be glamorous but it keeps insurance paid for.

Re: Ask HN: As a caregiver how to achieve things

#6

Post by Hermitian909 » Sat, Jan 21, 2023, 8:47 AM UTC

I'm so sorry you're going through this, I've been there.

Thoughts in order from most to least palatable:

1. Try your best to lean on friends and family if possible, nothing else will help you reclaim as much time. Don't be afraid to get aggressive here, you guys are struggling, let people know.

2. Ask yourself if you can invest in hiring help around the house: cleaning, cooking, laundry, etc. If this buys the time to get a much better paying job, it can be well worth it.

3. Consider a lower standard of care for your partner while you prep. This is a hard option, a mutual sacrifice for the future.

4. Staying the course may not be so bad. If you're married to your partner you may want to divorce to avoid their medical bills if there's a chance they don't make it.

5. If the disease is not very treatable, consider instead enjoying your time together rather than spending money on treatment (my own experiences with this problem and this article shaped my ideas: https://www.zocalopublicsquare.org/2011/11/30/how-doctors-di...)

Re: Ask HN: As a caregiver how to achieve things

#7

Post by trungdq88 » Sat, Jan 21, 2023, 11:51 AM UTC

Hermitian909 wrote: post #6

I'm so sorry you're going through this, I've been there. Thoughts in order from most to least palatable: 1. Try your best to lean on friends and family if possible, nothing else will help you reclaim as much time. Don't be afraid to get aggressive here, you guys are struggling, let people know. 2. Ask yourself if you can invest in hiring help around the house: cleaning, cooking, laundry, etc. If this buys the time to…

Thank you for the link. It is such a good read.

Re: Ask HN: As a caregiver how to achieve things

#8

Post by dumy55 » Sat, Jan 21, 2023, 12:54 PM UTC

Hermitian909 wrote: post #6

I'm so sorry you're going through this, I've been there. Thoughts in order from most to least palatable: 1. Try your best to lean on friends and family if possible, nothing else will help you reclaim as much time. Don't be afraid to get aggressive here, you guys are struggling, let people know. 2. Ask yourself if you can invest in hiring help around the house: cleaning, cooking, laundry, etc. If this buys the time to…

Thanks for the thoughtful reply. I found value in every point you have mentioned.

One option we thought of was to relocate to our home country near our family but did not because of good treatment available in US. But this is certainly something to think though for future.

Re: Ask HN: As a caregiver how to achieve things

#9

Post by dumy55 » Sat, Jan 21, 2023, 2:23 PM UTC

schreiaj wrote: post #5

So, some of this also depends on the implications of the word caregiver. I went through a year in which I was the sole care giver to someone that needed assistance walking most days and some days even with their walker would fall. (Fortunately for us, this turned out to be temporary and they are doing much better now, still some lingering issues...) If you are providing larges amounts of care daily? Yeah, it's brutal…

I used to provide a lot of assistance when it was first diagnosed. But was fortunate to have a supportive manager/team. Took about four months of leave. Not things are better, but not as much as before the diagnosis. But I get your point... I want to be in a stable job. Insurance covers expensive medication and I can't even think of losing it

Re: Ask HN: As a caregiver how to achieve things

#10

Post by theGnuMe » Sat, Jan 21, 2023, 3:01 PM UTC

I would worry less about the money, things usually work out. You also need to identify all of your options. Does your partner now qualify for SSI, disability and/or Medicaid? If they do get Medicaid. Otherwise the Affordable Care Act will limit your/their financial exposure as well.

Next, you need to build a support system of friends and possibly family (if they can come over for a time to help).

https://www.usa.gov/disability-caregiver

Some states have better options than others, especially for caregiving. You want to look into personal care assistants. It can be very difficult to find people but