Ask HN: As a caregiver how to achieve things

[dumy55]

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.

[Hermitian909]

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...)

[comprev]

Getting divorced goes against the promise of being there "through better or worse, in sickness and in health".

That's a brutal suggestion even if your intentions were good!

[cjbprime]

Why is it brutal? The legal status is just a document; the commitment to mutual care still seems present and honored. Why would it be honoring that commitment to leave one spouse in extreme medical debt, and the other spouse with the guilt of that?

(If you read "may want to divorce to avoid their medical bills" as "you should break up with them", I don't think you interpreted the suggestion correctly.)

[toomuchtodo]

The divorce is to firewall creditors chasing OP for post death medical debt. It’s not for lack of love, but because America.

OP should talk to an attorney familiar with creditor and estate law.

[dumy55]

Thanks,I will consult a lawyer

[toomuchtodo]

Hope it helps. I am terribly sorry for your situation.

[theGnuMe]

You do not have to get divorced to not pay a deceased spouse's bills or be responsible for them unless you signed that you would agree to be responsible and you don't have to sign that.

[toast0]

That's going to depend on the state the debt is incured in. In states without community property, the spouse is probably not liable. In states with community property, it depends, some states will consider medical debt a personal debt and some consider it a community debt.

If this is something under serious consideration, it's worth a consulation with a subject matter expert and not just random internet people. Also, divorce may affect immigration status, which seems to be in play as well; and it may make visitation more difficult, although you might just not tell medical facilities about the divorce.

[dumy55]

Divorce is not an option, I will consult a lawyer specialized in this.

[dumy55]

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.

[trungdq88]

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

[mpnagle]

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.

[saltcured]

Along these lines, there is a whole range of care options to consider. You have to do something sustainable as a caregiver, not sacrifice yourself to a death march. Paying someone to provide hands-on care, while you work, may be more sensible than losing your career and financial stability in an attempt to do it all yourself.

A board and care home can provide full time basic care, usually with monthly "rent" for the full package. Respite care is a shorter term variant for when a caregiver needs a break. These are not nursing homes because they lack staff doctors and registered nurses. They have a little economy of scale by sharing caregiving staff with several residents.

There are also hourly/daily caregivers who specialize in providing in-home care. This can get very expensive with frequent use though. There are less specialized variants for "sitters" and transportation escorts who can be a companion but don't handle as much of the patient needs.

Try to check with your hospital system or county social services, as they can probably help you bootstrap your knowledge of these topics. There also may be local support groups where other caregivers may have relevant experience and tips to share, as well as camaraderie.

[dumy55]

My employer is supportive too, I was able to take long leave and also last minute days-offs. I will think though this and thanks!

[comprev]

It also shows compassion at a difficult time and something you're unlikely to forget.

Prior to the need you might be already planning the next job move. Now you might be planning the next decade at the same employer because of how they treated you.

[saadehmad]

I was in a similar situation as yours for the past year or two.

I'm not in the states, so I cannot provide any insight on that aspect.

As Hermitian909 suggests, investing in hiring someone to assist with tasks such as cleaning, cooking, and laundry can be immensely helpful.

As you have said, your employer is supportive, don't change jobs. There is no way to predict if a new employer will be as understanding and accommodating of your situation. Having a life-threatening disease means that you may have unexpected emergencies at random times and need to leave work to attend to them.

Ask your employer to let you work remotely. It will allow you to provide better care for your partner. And, most importantly, spend more quality time with them. You never know when the time will change.

This advice may be difficult to hear, but record videos with them. Pictures are nice but videos have something magical in them(Speaking from experience.. I lost my partner a couple of weeks ago).

It is not possible for you to be with your partner constantly. If possible, consider relocating your home to be closer to either your or her family. Or you can move in with them semi-permanently for support.

[schreiaj]

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.

[dumy55]

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

[theGnuMe]

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

[dumy55]

My partner is not eligible for SSI, disability or Medicaid because of immigration status. I will check about Affordable Care Act, but currently we are on employer provided health insurance plan.

I will go through the link you have posed and check the state resources too. Have not heard of personal care assistants before, but will find out more.

[theGnuMe]

You might ask your state's department of human services. If your partner is a legal immigrant they should qualify. Medicaid is a 50:50 federal and state partnership.

Another link for you: https://rarediseases.org/policy-issues/medicaid-eligibility/

[tomcam]

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.

[dumy55]

Thanks. I am not eligible for any government jobs in general. But I understand your point of choosing a stable job.