Medicaid long-term care or home and community?

It's better to find a good facility for her now. She is weak and will need care you are unable to provide. I found that when I asked relatives if they would take turns taking care of mom at home (which they all wanted her at home, not in a facility) suddenly they were unable to volunteer. I don't blame them one bit, but it showed them clearly that when you bring a fragile old person home almost everything falls to the person brining them home, not others. They were much more supportive of a facility placement after that.

I'm sorry you are posting here. Your mother is only 78, which is not that old. At least by my standards these days. I think your mother would be better off being cared for in a facility because it will be easier for you. You are still working and should continue to work so that you can have enough money for your later years.

I didn't have a lot of luck with care agencies and opted to hire each person individually for my parents but situations happen and these people might not show up because of illness or weather. You need reliability. Don't expect other family members to do what you are hoping they will. I've found most family members don't want to have to sacrifice and be inconvenienced and if someone else steps up they are more than happy to let them.

Place her and visit often. It is the most reliable way for her to get the care she needs. It is not the greatest option but there are no good ones to be honest.

Good luck.

I don't see how you can work full time and be a sole caregiver. Your Mom had CP and still gave birth to and raised children? That's impressive.

You have put in 7 years. Don't quit your job to take care of Mom. Have her placed, so you can continue your career and prepare for your old age. Mom is better off in a facility with a staff to care for her, meals, meds, bathing help and be safe. Also around others her age. She is requiring an assist now, which is also reason to be in a facility that has all the equipment and medical experience needed.

Sad and miserable is how life becomes as you get old with health issues. Nothing can change that fact. She will have people to talk to in a facility and not be alone all day.
Sorry this is happening.

My wife is on Medicaid home and community based services and we receive in home assistance 24 hours a week. It’s been a lifesaver for me but I am her sole caregiver the rest of the time. If I reach a point where I can’t care for her anymore the waivered services allow for a transition to LTC with assistance from her case manager. I am retired and able to attend to her needs when the caregivers are not here. If I was still working it would not be possible to care for her and LTC would be the only option.

You are right to be worried that home and community care will mean a lot of work and worry for you trying to secure reliable help! It can work if you happen to have a good friend or family member who is able to and wants to provide the cares she needs.
When I was at this crossroads 10 years ago with my husband, I couldn't find a nursing home that would accept him (he had behaviors which got him kicked out of the nursing home). I was working full time - we were both only 53. I feared that relying on a stranger to show up every day at 6 am and stay til 5 pm would not only be a headache for me, but jeopardize my job when someone was a no-show, AND I would have to work all night as a caregiver after working all day, then get up early the next morning to do it all again. I knew this was unsustainable, and made the decision to quit my job to stay home as his full time caregiver. We had a family friend who was VERY reliable and had worked as a caregiver previously, so she was hired to help.
Since then, she has retired, and we moved several states away. I have not been able to get reliable home care for the 6 years we have lived in AZ, and it is very frustrating for me!

I share my story as an example. Yes, she will be better cared for, and you will have less worry if she is in a nursing home. Everyone misses their own bed.
She will, in time, settle in to her new home, and it will become her own bed.

I am giving an explanation about your guilt and her feelings if and when she is in SNF. I have given this answer a number of times. You can enlist the social worker and/or doctor that this time to tell her that she she is considered unsafe at home. Remind her that it is the medical staff that signs the paperwork for her to be in long term care. You can keep the mantra up that it is her disease she can blame and that doctors and/or social workers will decide when she is able to be discharged home. Which will be never in reality. You can explain to her that your cannot be her 24 hour caregiver because you need rest. You might still have to work if you are not yet retired.

OP you are correct to be concerned about being able to find consistent home health paid by your States Medicaid for your wife.

The Home & Community Based Services (HCBS) Medicaid programs is what runs these and they usually have home health companies that they are contracted with. Home health overall can be very much challenged in finding consistent and reliable workers.

Medicaid is administered by each State so what that State has as its minimum wage is a factor in all this. Many many States (like all the South except FL) that have a minimum wage of $7.25 hr, so anything the State pays has to tie into that minimum wage. Home health is viewed as low skilled. Tends to be $9-$11 an hr that a worker gets paid directly with the agency which is getting a small administrative fee. Target pays $15 hr as the baseline wage & most Target employees make $18.50 hr. For both potential employees and home health agencies, it’s simply not worth it to be a vendor for HCBS as the workers can go off and work higher wages @ Target and the home health co can find private pay customers and charge double or more the State fixed rate.

Also for HCBS there will be an assessment done. If she gets assessed at close to or over needing 40 hrs of care, the recommendation will be for care in a SnF as they do 24/7 overisght. Only if you live in an area - like NYC - that inhome is more cost efficient, will care beyond 35+ hrs be done by HCBS.

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on doing the LTC Medicaid application, for couple when 1 will be the in the NH spouse and the other is to remain the living in the community spouse (a CS in Medicaid speak) can be way more complicated than doing a solo application. The big issue is that y’all’s income and assets will need to be segregated (only she has to become impoverished for eligibility) and it flat is just not simple. For couple situations imho it realistically should be working with a CELA level of elder law attorney as it just not straightforward for couples. For example…

INCOME: for most States her max is $2,901 mo and she is supposed to pay almost all of it to the NH as her LTC Medicaid Share of Cost/ SOC. HOWEVER if you really need some of that income of hers to keep your household afloat, then you can do the paperwork with documentation to file for a waiver to get CSRA. Community Spouse Resource Allowance and think of it as old school style alimony. But doing the waiver isn’t easy and you probably will overlook costs. But an experienced atty knows.
Your own income should not ever be a factor for her eligibility unless you make a lot of income. Like you’re close to the SS $ max of $5,181. But if this is you, unlikely to be able to get a waiver of her income. .

ASSETS: most states have it as at max of 2K in nonexempt assets for the NH applicant. But you as the CS can have your own assets. What the figure is dependent on your State. Some do the max of abt 162K others do the Federal minimum of abt 38K, others do a 50/50 spit. Add to this, what LTC Medicaid recognizes as assets tend to be a fixed snapshot date. So if ya need to move $ around, possibly do a SPIA, take on debt, whatever to make yourself able to keep more of the assets, is best to be done b4 the snapshot. Again it can be overwhelming and why for couples a savvy experienced CElA atty is a good option.

Big take away is only she has to become impoverished to be eligible for LTC Medicaid not you as the Cs.

Individual LTC application filing for widowed or divorced,imho can 100% be done by their POA or kids IF they have been involved in the elders life so know where they bank & already a signatory, know what their debt load kinda is, how they have health insurance, and elder has already done some legal, to me that can totally be a DIY by their POA or one of their kids. But couples is way way more complicated.

there have been lots of posts on CS / NH situations on this forum. Go up to the “Q” icon to search.

Your last sentence answers your question. Yes, it is better to go the facility route ten ensure she is safe 24/7. Don't feel guilty about getting her the care she needs.

If your mom is in a position where she can’t be left alone at all, then the home and community care assistance will probably not be enough. My mother qualified for something like 16 hours per week. I saw someone else on here. Say their parrot got 24 hours per week. That would still leave some gaps you’d have to fill in while you work, either with private paid caregivers, family members, etc.

I have not read the entire thread but I talked with an RN who was the Care Manager for Medicaid home health care.

The RN mentioned they were always short of CNA's and she triaged the CNA's and assigned care each day depending upon the medical needs of the client.

i.e. The RN told me many of her Medicaid clients would call wanting a CNA to drive them to Walmart. The RN said trips to Walmart were not a priority.
Clients with higher level health needs were prioritized with more hours given the shortage of workers.