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.
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
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.
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.
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.
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.
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.
See All Answers