The time has come for long term care. What is my first step?

It sounds as though mom is being discharged becausr she's stopped making progress, not because she's met goals.

AL for someone who is doubly incontinent? That doesnt sound like the apprpriate level of support.

Can you check out some local ALs and ask that they assess her for admission? That's the usual process. Alternatively, see if the local Area Agency on Aging will do a "needs assessment" and advise.

Medicare & a supplement will not pay for Assisted Living or long term care of any kind. AL is not likely to accept your mother in her condition as it's intended for seniors who are fairly independent & only require minimum care; plus, it's private pay.

It sounds like your mother is in need of long term care in a Skilled Nursing Facility with Medicaid footing the bill if she doesn't have sufficient income to foot the bill. Speak to the social worker at the SNF she's current at for rehab; s/he can steer you in the right direction, most likely. You may also want to speak to an Elder Care attorney about the Medicaid requirements and lookback period in your state.

Like BarbB said, you can get a needs assessment done as well, but a doubly incontinent person is not likely to be accepted into AL. If you have Morningstar AL in your area, they DO take elders with more needs than most other ALs, but the monthly costs are also quite a bit higher. Your first step should be to speak with the social worker at the SNF mom is currently at, to get some guidance as to how to move forward.

Best of luck with a difficult situation.

Speak to the facility's social worker. Let her/him know that you are unable to care for mom at home anymore, that she needs more supervision than you can provide. If mom needs to apply for LTC Medicaid, then you can help with starting the application for her. If the social worker at the facility does not seem very helpful to you, then you need to contact APS, or a state level elder care social worker and let them know mom's situation. They will step in and take guardianship if necessary. Please make sure you or your husband does not take mom home. You know yourself that your mom would be put in a dangerous situation if that were to happen, and you absolutely do not have to nor should you take her home. As far as any price the nursing home quotes for the days she is there that Medicare isn't paying for, make sure you don't pay from your own money. Mom's money only pays for that, and the NH can bill her.

The 1st step is to get mom a needs assessment.

If she has any assets, she will have to self pay until she has less then 2k cash. Insurance doesn't pay for LTC.

Someone is going to have to find a facility that meets her current needs and hopefully, her increasing needs until death. I wouldn't leave that to a stranger, I would have someone that loves mom do this. Even if you need to take a break from work. Because facilities vary so much, you want to make sure she is going to what seems to be the best choice for her. It may not work out that way but, you have to start there. look for some place that has obvious good interactions with the residents. Does it pass the smell test, how is the food? Do they have activities daily? It isn't necessarily going to be a new, fancy building, that is the least important thing.

Best of luck, this is such a difficult transition and the most stressful for you.

Unsafe discharge.
Call her doctor, admit to a NH until bedsores are treated.

I appreciate all the helpful advice. The social worker at the rehab is the one who plans on me paying for any extra days, which believe me I won’t be doing. She also wouldn’t discuss the bedsores and advised she knew nothing about what our next steps should be and that my mother had met all her goals there, which must have been just breathing.

Mom has zero assets and I’ve been charging her rent for the time she’s lived with me so she would have living expenses to show should this day come.

Ill reach out to the state APD as no one at the rehab has been even slightly helpful.

Have you had a care conference?

I would ask for a care conference and ask to see the PT and OT goals. Talk to the therapists and ask for documentation that she has met those goals.

Make them demonstrate to you that mom can walk 50 feet without assistance, for example.

Call the Ombudsman and report the bedsores and ask what can be done about them.

Is a wound care doctor tending them? Ask for mom to be seen by one asap. Or transfered back to the hospital for treatment.

And discharge to a defferent rehab.

I will reach out to our county's APS and see what I can get going. I definitely need her on Medicaid and the Rehab told me her bedsores were healing, but the night nurse told me the wound care team was in earlier and put in a lot of new orders. It seems the rehab is not being honest and I am wondering if I should just send her back to the hospital where she will get a higher level of care.

I would wonder if the hospital will take her back with bedsores that she got at Rehab. My daughter went thru a court hearing but it was in reverse. The patient came to Rehab with bedsores that were documented by my daughter. The family was trying to sue Rehab but the fault was the hospitals. Rehab won.

YOU are not responsible for your mothers care financially. Those bed sores are a big problem for Rehab if that is where she got them. They have to take care of them and it needs to be done by a woundcare Nurse. I would tell the SW that she needs to start the application for Medicaid and that Mom needs to be transferred to Skilled Nursing. That you live out of State and that husband cannot care for her because he works 60 hrs a week and there is no money for in home care. Be careful about getting APS involved. They could take over Moms care and become her guardian. You lose the right to make decisions for her. Start with the Ombudsman. See if they can address the problem and the bed sores. Bed sores are very important. It means they are not shifting Moms position. Its their responsibility to treat them. Once sent home, you have taken over that responsibility. This is not something a layman takes on. If the Ombudsman doesn't address it, then APS should be called in.

If Mom has any assets, you need to spend them down. My Mom had 20k that was used for 2 months of care. It gave me time to get Medicaid applied for and started by the 3rd month. There is a criteria that has to be met. Certain info Medicaid needs. In my State you have 90days from date of application to spend down any assets, supply info needed and have a place set up. If not done in that time, u start over. So, you need to keep on top of that application. The SW can get the ball rolling but I would not trust her/him to follow thru in a timely manner. Keep in touch with the Medicaid caseworker. You email/fax any info needed. If need to, you mail and certify paperwork. You can keep the SW in the loop, but you make sure everything that needs to be done is done. You may need to take some family leave (FMLA) to be able to do what is needed. Be aware, that any Social Security or pension Mom receives will need to go to her care.

You have the right to refuse discharge. Nursing homes are required to do a safe and medically appropriate discharge. So push back. They may transfer her to another facility.
Not sure what state you are in, but if your mother is single and has less than $2000 or $2,500 (depending on state) in total assets, she may qualify for Medicaid long term care now. Nursing homes will not advise on spenddown strategies other than just pay her assets to them until she qualifies. If there are assets, reach out to an attorney in your state.

I do so appreciate all the helpful advice. I have spent a lot of time on the phone from APS to the NH to the Ombusman to the Medicare dispute line. The NH has been way less than helpful. The Ombudsmand was a godsend. She explained a lot to me and pointe me in the right direction. I am going to do my best to gather up the huge list of documents they say I need to get a Medicaid application in place, but am not sure my mother even has most of the items. I did manage to get an appeal filed to keep her in the rehab for a while longer; they have up to 72 hours to advise me on that. Otherwise I guess she will just stay there and they can bill her for money she does not have. Being in another state, caring for a handicapped son, negotiating the sale of our current house and purchase of another and both of us working full time, and seeing my mother is such poor health has really taken a toll on us both.

Thanks so much for the update, Tluther! Don't let the b@$tard$ wear you down...

Ombudsmen, like social workers, come in 2 varieties; great and terrible. Glad you've got at least one good one!

My advise to you is to thoroughly check the facility out. My personal experience with the Bristol assisted living facility were my wife caught covid and died was very bad. If I had to do it over again I would not have sent her there unless these facility had better staffing and better ppe and SAFTY PROTOCOL. That is what I went through, you have to make you decisions.

Nusing Homes are a Horrible place to be sent to and their Rehab is a Joke.

I know this from experience.

They are all understaffed and you can literally lay in your urine and feeces for up to an hour.

They have special blow up mattresses that your mom should have been on to help with bed sores and they should have been applying butt paste ointment to help with not getting bed sores.

You should check with her Insurance and find our exactly what your options are and what is covered.

Your mom will continue to go downhill in a Nursing Home.
Please work something else out.
She needs to be taken out of the Nursing Home like yesterday!

You can have her signed up with Home Health where Audes will come 3 times a week to give her a Shower Bath or Bed Bath.

Mom can have In Home Therapy.

A Nurse will come by once a week to check on her and take her vital signs and she'll report to a Dr that can give rx's for healing the butt sores.

I found that virgin coconut oil does wonders for it but you must keep a thick layer of thick butt paste on the skin to keep moisture out.

If she can't get up to go to the bathroom. While in bed, she keep her laying on a diaper but keep the diaper opened so air can get to her.

You can check around and find Care help for $10 an hr you don't need a Nurse for Caregiver.

Praters your mom doesn't have to spend her end of life in a Nursing Home as it's a slow and painful death sentence in both physical and mentally.

Also, if your Dad was in the Military, your mom could qualify for up to 30 hrs of Caregiver Help a week.

In terms of finding a good Assited Living Facility, I'd visit several at different times of the day, (that's what we did), and see if the residents look happy and well taken care of, if the facility will be in your area. Even once your mom moves into one, I'd also check on her (as your work schedule allows), at different times. You'll see how different staff members interact with the residents. Will your mom have some freedom to go outside, let's say to a safe, enclosed area, or will she be inside all the time? With Covid, I'd check policies as well, in terms of visitation, not only from family members, but with the residents themselves. I'd also check to see if a fax machine is accessible by the staff 24 hrs. a day. My mom was in Memory Care for a week, (she then lived with us), and the doc faxed a medication change at 5:30, but the nurse whose office had the fax machine, left at 5. Hence, my mom didn't get the med. dose changed until the next day. To use an old expression of frustration:"Good night nurse." I even wrote a book about our travails taking care of my mom called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." My Mother-in-law was in Memory Care for many years, and for the most part, we were happy with the care she received, but Hubby went there every night after dinner. If your mom will be in a different state, I'd either hire someone or ask a local house of worship if volunteers could go check on her. Best of luck.

Speak with a elder attorney they can help you with getting her care as far as finances and Medicaid . Sorry about the bedsores - my Mom Had a Horrible one and she also went downhill after being in a rehab . Check YELP and Propublica they Publish what NH Have Patterns of abuse , neglect , complaints . Go Visit the NH Visit them and speak with whom ever is in charge . You will see if People have bruises or have been punched in the face . You Can also see what they are eating and the attitudes of the Nurses . Most NH have one doctor covering several NH - they are a For profit business . This is really the Only way to screen NH - Go to a senior center ask them what NH Have the Best reputations . Good Luck .

Do not bring her home - your lives will be disrupted and will be horrible until she passes. You need to live your life now as she has lived hers. Talk to different places and go and visit them. Whatever you do, DO NOT CONSENT TO BRING HER HOME - that is what they are banking on. Contact an attorney for help now.

Nursing homes for rehab are essentially a place to keep a person relatively safe when they cannot go home while recuperating; if mom is about to be discharged, tell them under no circumstances can she come home as there is not proper care available to her there. Consult with elder law attorney, all aging agencies, and get referrals for the proper care facility that you find has a good record and stay on top of them to live up to their advertised offerings.

Talk to social work at the rehab facility. They can help you with the process. You might need to start researching facilities near you that have openings and are covered by your mom's resources. Social work should be able to do this research, but it helps to get to know the facilities near you in advance.

I would start looking at assisted living facilities. There are a number of sites that rate them. And you can set up an appointment to tour the place and speak with them. My brother’s required a family member tour before admission. An assisted living facility will look at the person’s ability to take care of themselves. Do they wear briefs and need to be reminded to go to the bathroom? Or does the person not have any control at all? The assisted living facility will have someone assess your mom for the level of care she needs and what they will provide.

If they say she’s not a candidate, your next step would be to go to the Medicare website where you’ll find ratings for nursing care facilities. Bedsores and staffing are among the criteria that Medicare looks at in their inspections. I found a great one for my brother who has Medicare (covers his hospice care) and Medicaid (covers nursing home care)—it had an overall rating of four stars and five stars for resident care—and they have lived up to it. Medicare has a limit to the number of days they cover for nursing home care. I would definitely look for a place—AL or NH near you so you can visit her and keep an eye on her. Unfortunately that will entail clearing out her home sooner or later. It can be hard to recognize a nursing home may be the next step but it may be the best for her. After finding facilities that look promising work with the social worker where she is now. Have them make the calls.

Your mom would definitely have more social interaction in a facility—NH or AL. My brother was diagnosed with brain cancer and we noticed how much he brightened up in the hospital. People were checking on him throughout the day. Way better than holing up in his apartment by himself all time.

I would find a geriatric social worker who can assess her—will she even be able to live on her own again? They can can also help you make the financial decisions independent of what the facility might tell you. Some facilities are great at transparency, others not so much. The social worker can also help you figure out the financial end of things too. Another source would be an elder law attorney. Ours even recommended an excellent assisted living facility when it looked like that was the ideal setup for my brother. Do you have a Power of Attorney for finances and health in place? Good luck!

Tluther: I was going to suggest that you speak with the Ombudsman, but I read your post wherein you stated that you have already done so.

I believe Medicare pays for first 20 days days 21- 100 are copayment about $165 ; after that is long term & apply for Medicaid. In assisted living, you have to just need a little help…your mother needs more assistance. Keep her where she is ..& work with Medicaid/ Social Worker to get her on Medicaid…after short term insurance expires. Don’t dare take her home..as taking care of her is a 24/7 full time job & one person can’t do it all. She will require lift machine for transfers, diaper changing, & more. Leave her where she is.

If she got bedsores, she might get them anywhere..you have to address this issue with Nursing Supervisor to change her diaper more often, put A&D ointment & the Desitin cream..& turn her every so often to get off her backside.
Hugs 🤗

Refuse to take her home at all until the bedsores are healed up. Tell them it would be an unsafe discharge as no one available to look after her, and let them find somewhere they feel suitable to discharge her to. Until she is more active and not likely to get infections leave it to the hospital to sort out, when she is recovered you will be able to talk to her and discuss her needs more.

Print a checklist and start calling facilities. Arrange to tour them. Figure out what your mom's income is and what she can afford to pay.

Ask aging care. They have many resources.