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Caregiver for bedridden mother who lives in my home with father (who is also ill but who basically takes care of himself). I need more help than Medicare is providing. Father won’t let me put her in NH even though I am burnt out and have no siblings.

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Robin4, welcome.

This is a complex issue. The is Community Medicaid, which is health insurance. Then there is Long Term Care Medicaid, which covers NH Care

Medicaid varies WIDELY by state. Since there is a spouse involved, it really behooves you to get dad to an Elder Law attorney who can explain this complex situation.

You say you are burned out and dad refuses to put mom in a NH.

If dad doesn't want mom in a NH, then either HE does the caregiving, or her hires help.

Most state Medicaid programs only cover a few hours a week of in-home care.

Caregiving has to work for BOTH parties
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Thank you. Yes, Dad tried to do the caregiving and he is now in the hospital with heart failure and pneumonia. It’s just too much for him. He’s 87. And I feel too guilty to stop. I work full-time, luckily remote, but my mother takes a lot of care and now he will, too, when he gets discharged from the hospital. Let’s just say my husband isn’t too happy with the situation.
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Babs2013 May 2023
Your parents maybe mad at you but you have to think of them in this situation because what happens if you get sick and can't take care of them where would they be. You need to find a nursing home NOW so that both of them can be together they do have rooms where husband and wife can be together and then your father can help his wife and they both can get help. And you can visit as much as you want. Yes, it'll be hard but you are saving everyone including yourself.

Prayers
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Robin, you say you feel "guilty"?

Did you do something that CAUSED your parents' declining health and advanced age?

I think perhaps what you feel is grief. I did too, as my mom became more frail and unable to care for herself.

Your dad might become on of the 35% of caregivers who die before their charges do.

Both of your parents need a higher level of care than can be given in a home setting. Start working with the Social worker at the hospital to get them both into an appropriate setting.
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Robin4 May 2023
I’m sure that’s very true. Just a difficult thing to do as they will be very upset to leave the home and be put in a nursing home.
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When was the last time your father visited a "nursing home"?
A Skilled Nursing facility is a bit different than the "nursing homes" were 20, 30, 40 and more years ago.
Your mom might also qualify for Hospice at home.
She would get supplies delivered, medications delivered to the house.
A Nurse would come at least 1 time a week. A CNA would come 2 to 3 times a week to help bathe mom.
There is a Social Worker assigned to the team as well as a Chaplain and most Hospice have a variety of "therapies" that you could ask to visit. (massage, music to name 2)
You could request a Volunteer to come sit with mom so you can get a break.
You would get all the equipment that you need to SAFELY care for her delivered as well.
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Robin4 May 2023
Mom was in a skilled nursing facility before she went on hospice but suffered a stroke there. Was not a good experience. We took her home from the hospital on hospice but she did not pass and was taken off hospice and out on home care. She does have an aide who comes out two mornings a week and a nurse who checks on her once a week. It still is not enough.
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Robin,
Welcome to the Forum.

You say that your Mom is bedridden. Can you tell us more? Does she suffer from dementia, physical debility or BOTH?

You mention Medicaid. Has either one or both of your parents in some way managed to qualify for Medicaid in home care as well as receiving Medicare?

States vary a lot in terms of what care is provided. I know that MI has a lot of in home program help, and that would be arranged through qualification for Medicaid there, and a case worker. Other states are not as liberal with care provided. Medicaid is a joint Federal and State program, so it would be up to you to explore this subject with Medicaid in your own area. Wish you luck and hope you will update us regarding what you find or do not find in your own area for your own situation. It sounds as though there's an awful lot on your plate and I hope you have some support system in place for yourself.
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Just curious, what type of homecare were u able to get Mom thru Medicare. Being a health insurance they don't do much. In home care after a hospitalization and thats temporary. A member has talked about intermittent care for Aunt and Mom she got thru Medicare. But as far as I know Medicare does not supply aides for daily care.
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Robin4 May 2023
She qualified for home health care because she is bedridden and has chronic kidney disease. She has an aide two mornings a week and a nurse who checks on her once a week. They are not here long and it’s not enough.
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Yes, thats in home care and you don't get much help. You need to see if she qualifies for in home Medicaid.
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Contact your doctor and ask for a social worker and a visiting Nurse and see if they can hook you up with elder services .
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Robin4 May 2023
Thanks
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Sorry you are having to be in this situation, so hard. Hugs. When elderly parents need lots of care because they are no longer independent and it is not possible nor safe for them to remain in their own home without daily 24/7 care there are not many realistic options unless one has lots of resources. You the adult daughter can NOT do this long term without help. Your dad realistically cannot do this solo either. In home aides are needed OR a decision about facility care has to be made.

Medicare does NOT pay for full time aides, but only has a limited benefit post op OR if one is certified as "homebound". That said, the benefit is not 24/7 "custodial" care as Medicare does not provide for this.

Medicaid -- once one qualifies, more on that -- in your State might provide some home-based care, but again this not 24/7 much less daily care. And most states have a long waiting list for a Medicaid-covered aide. We were told the wait is 5 years where we live.

For Medicaid, your LO has to meet an income/asset and care needs tests. If your parents have assets/income above perhaps $2 or $2.5K total, your LO may NOT qualify. Each state is different, and there are a myriad of rules and paper work. Best to get with a licensed elder care attorney in your State to help w/this.

Medicaid long term nursing home coverage -- different than "general" Medicaid medical coverage -- could potentially pay for long term nursing home facility care. Again there are lots of rules, asset/income tests and "level of care needs" to be met. This takes time to work through, so best to research and find a high qualify SNF (skilled nursing home) that is both Medicare and Medicaid qualified. Go visit w/your father as part of what happens dad if something happens to you OR me, who cares for mom? Perhaps that might motivate him?

If placed in a nursing home, your dad can go ever day/all day to be with her but her care would not fall just on him or you. Facilities today have lots of activities. My mom's has "exercise classes" two times a day, even if in a wheelchair they can go and the class has things specifically geared to those with limited ability. There are daily big screen movies in the social hall. Daily outings on the grounds when the weather is nice. A game room, checkers, cards or other games. There is a book club, a dining hall or food can be brought to the room.

My mom is a difficulty eater, so she gets to pick all her meals -- what she will eat -- and they bring all her meals to her room. The doctors are right there, she sees her board certified geriatric internist once a month right there, no need to coordinate doctor appointments outside unless a specialist is needed. On staff they have a cardiologist, psychiatrist, psychologist, social workers, physical and occupation therapist (PT and OT can be arranged right there, even in their room if needed). The podiatrist comes every 6-8 weeks to handle toe nails and feet issues, the optometrist comes once a year and the dental van comes 2 times a year. And all the Rx and over the counter drugs are managed. They have special programs for those with dementia, "memory care" when/if needed.

This would free you and your dad up to 1) live your lives and 2) get the care she needs. You would still "care" for her by spending time with her and taking her out. You can take her out to lunch, shopping, to religious services or just for a drive, etc.

No one really wants to go to a nursing home, but often it becomes necessary OR full time aides are required. We have an aunt in New York City w/lots of assets and she has 2 full time aides (they work in shifts) but it costs $9K a week or $36K a month! Private nurses where we live (east coast urban area) cost $150 an hour. Less skilled aides cost $25 per hour. A friend (72 yo) who broke her pelvis in Jan has had 5 to 6 private aides daily M-F while her husband works. Some were great, others just slept on the couch and were fired.
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GB2112 May 2023
Just to clarify some misconceptions about Medicaid: in many states that have Medicaid homecare waivers, Medicaid *does* cover daily care and even live-in care. My mom is receiving this benefit in CT right now (she was approved for 8 hrs/day of care but they will cover up to and including live-in care should her needs change).
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For feelings of burnout: I would seek more information on in-home respite care. Respite provide short term care for 1-4 weeks for primary caregiver (it Is usually private pay). If either of your parents are Veterans, the VA also can assist with respite care fully paid for by the VA.
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Confer with an Elder law attorney who can probably best help navigate you through Medicaid application and, provide you with other valuable guidance for the situation you are in.
Be sure that you have POA papers signed for decision making and care , medical and legal purposes. There will of course be a tug of war between the husband of your mother and you( unfortunately), emotional dynamics all most guarantee it; this emotions must be respected and addressed BUT do not let them direct what you know is needed. Get help, support for yourself. Confer with Elder law attorney. They should give you one hour gratis consult for you to share your situation and then you can decide about going forward with their help. Also confer with both parents PCP to get accurate up to date " level of care needs assessment" for both.
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Here in Pennsylvania there is PA Waiver Program that provides some money towards care in the home. The applicant has an inhome visit to determine eligibility based in ADL’s and a financial review of income and assets. My mother met the needs portion, but had slightly more income then the guidelines. We received a small check towards her incontinence supplies.
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Robin, so your 87 yr old father is currently hospitalized, is that right? He’s in for heart failure and pneumonia? He’s not able to take care of himself & hasn’t been.

If he’s still hospitalized, this more than likely will provide for him to be discharged for post hospitalization rehab in a Nh/SNF that has a rehab unit OR EVEN BETTER maybe if he has an infection or other issues that can’t seem to get tamped down go into a LTACH. Either will be Medicare, the rehab will be 20/21 days at 100% then up to 100 @ 50%; the LTACH is all Medicare & whatever he has as his secondary health insurance. If LTACH placement is mentioned at the hospital, please pls listen to what the care team is saying….. he’s quite ill and absolutely needs this type of speciality care. LTACH placement is only via referral and it’s a narrow window to get in via that referral.

Not to sound harsh but perhaps view this an an opportunity to have your dad go into a facility. He’s not any legal position to tell discharge planner at the hospital that he’s going home as he does NOT have a home. He resides with you and your hubs; you can firmly tell the planner that it would NOT BE A SAFE DISCHARGE for him, that you do not have the ability to do the 24/7 oversight and care he will be needing in your home and you will not be taking him back into your home. But you are going to have to come to a realization that this is the best resolution for him and stick to it.

On your Mom & kidney issues, So she is ESRD eligible? & getting extra services due to her kidney care that is paid by Medicare? Often ESRD benefits tend to get overlooked or underused as they are speciality category which allow for early MediCARE enrollment & not on the usual radar for caseworkers dealing with elderly as ESRD tend to be way waaaay younger under 65 group who go to Fresenius/DaVita and utilized the programs those 2 companies have set up to use Medicare $. (fwiw pretty profitable for Fre/Dav). So often caseworkers who do elderly “duals” on Medicare and Medicaid aren’t familiar with what’s out there ESRDwise. Has your mom ever gone to a kidney care center? If so, maybe reach out to where she used to go and see if they have any suggestions as to getting a better care plan for your mom.

You cannot keep up this pace. Bringing your dad back home post hospitalization AND a mom bedridden with kidney dx, both back side of 80’s needs a team, A TEAM, of caregivers. Not a solo gig, certainly not a one for someone who has FT job even if it’s WFH. Your husband knows this, he’s probably worried that it will be 3 of y’all needing help…. what then? Really if your dad can be discharged to a facility, let it happen so things can be re-evaluated under less stress for a care plan for your mom.
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KaleyBug May 2023
She said fathers at home taking care of self, is this post in the wrong place
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Any chance your parents could be placed together? Perhaps the Elder Law Attorney might know? Maybe at a Continuing Care Retirement Community (CCRC)?
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In order for your mother to qualify for Medicaid she must be within their income guidelines. Contact the Medicaid office in your state/county and they will explain it all to you and they will let you know if your mother qualifies for Medicaid.
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Ask for anything that might help the situation. Your parents income will determine if they are eligible for Medicaid programs. Contact the office near your location and find out what kind of help your state has, get the income limits, and if they look eligible, apply.

If they have some money - income or savings - it's time to start using some of it to hire some in home help. Medicare pays for very little in the home - perhaps some physical or occupational therapy, weekly nursing visit, some areas have in home podiatry or other dr care. Her doctor would have to order Medicare home health care like those things.

If you are really at the end of your rope in regard to taking care of them, you might talk to dad about your needed rest and see if he would do a shared NH room for both of them. He could be out and about while mom gets the bedridden care she needs. He would be able to observe mom's care.
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Do you have Area on Aging in your area location? Can you self pay to hire help?
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Robin4: Search Medicaid.gov in your state.
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Check out P.A.C.E. It is a program that brings nursing home type of care to your home. It is Medicaid eligible. If it works out, it still takes 2-3 months to get started. You will also have to use the doctors and other providers who participate in their program. I turned a friend on to this and he husband (cancer, dementia) will be getting P.A.C.E services soon.

Beyond that, look to local organizations for respite care, as someone else mentioned.

** Good Luck!
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igloo572 May 2023
Just a technicality & warning/alert on PACE, it is 1st & foremost a MediCARE program in that you must be on Medicare to be enrolled AND you can choose to be only on MediCARE and go to a PACE day program but will do a separate monthly copay if not also on State Medicaid. What States are doing is wanting you to go onto Medicaid as health insurance so become a “dual” Medicare & Medicaid enrolled for health insurance for all PACE costs AND ALSO have you apply to go onto that States community based Medicaid for other billable via PACE referral services. This is kinda important should your State include community based Medicaid programs in how it does the required attempt for Estate Recovery (MERP). If your State does this, every time you go to the center or utilized a paid by community based Medicaid service for care, such as IHHS / in-home caregivers that is creating a tally of costs to be included in Estate Recovery. PACE is designed for those who otherwise would qualify for skilled nursing in a NH but by being in PACE are able to continue to stay in their home as they go to PACE center a day or two or more during the week, have transpo to/from, have meals and activities, get regular healthcare screenings at the center AND if need something not available at PACE, it will be done at whatever hospitals/clinics affiliated with which PACE coordinates. If you are a “dual” at a PACE, the PACE program will take over how your healthcare gets done as PACE issues a # which is your new insurance # that is 100% tied into the provider /institution network affiliated with this PACE. There is little wiggle room for the elder to travel or see old MDs, as PACE centralizes all care that needs to be coordinated by them. PACE now will serve as a gatekeeper for entry into a NH. It’s designed to keep elder at home and fully expects spouse, or other family members to do whatever needed all the nonPACE provided hours. Only if it gets way beyond that, will PACE do the referral to have the elder go into a NH. Hopefully elder is low income / assets enough to be able to apply for LTC Medicaid (the program that pays for custodial care).

PACE imo is newest trend for cost containment/ efficiency. It shifts $ at $6-$15K a mo from being spent on an individual with 24/7 oversight in a NH to shifting $ to a place that dz’s+ use & under a contract for its costs AND makes family do all nonPACE provided care. It sounds great but……

Also on the becoming “dual”, if you have a really good secondary health insurance with choices and have doctors you like in more than 1 healthcare group, you may not at all want to give that up to go into a PACE, limited to docs in their network and go on Medicaid. If you’re a couple who owns a home and it’s only your spouse that would be at need for PACE, you may not want to enroll ill spouse onto community based Medicaid as it puts your home in the crosshairs for estate recovery. It limits your ability to travel and be able to get care should something happen while away from your city. PACE cannot force Medicaid but will charge a monthly copay if not. This is what happened at 1 of the 2 PACE in my area. 1 PACE way more financially secure retirees w/FEHIB or better secondary health insurance as part of retirement package. (Area has Coast Guard, Navy & oodles of oil&gas retirees) No way giving that up to become a “dual”. Couple of folks challenged Medicaid needed requirements and won. Copay abt 3K a mo for 3-4 full days a week program. MediCARE still gets billed for healthcare services done at the PACE but they keep their old Medicare #.

5 years ago TX had maybe 4 PACE, now slightly under 100. PACE shifting $ away from individual care 24/7 done in a facility to done at a day center with family / spouse having to figure out & do all the rest. I think the reality on doing 24/7 oversight all non PACEtime will be quite challenging for a lot of families.
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