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My mom has Dementia and is becoming very tired and is starting to not want to eat. She sometimes hides her food I give her so she can throw it away after. She is using her walker and does do somethings for herself but that would only be to maybe wash a few dishes or go to the bathroom. If I tell her we are going out for a drive or a walk she is excited about that but to get her there is exhausting for her. She is 90 and otherwise very healthy.....

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I just put my 96 yo mother into Hospice, because she needed extra care that the AL facility could not provide. She has gone down-hill suddenly over the last six months, and a recent trip to ER took too much out of her and me to ever do it again. She will have her own caretaker in the morning and the nurse will stop by once a week to check on her. My mother is wheelchair bound, has very little balance, is almost blind, and wears hearing aids. She is slowly approaching her limit. Her doctor had to recommend that she be considered for Hospice.
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Because your mother's physician recommended Hospice, then please give them a call. They will send a nurse to evaluate your mother, and if she meets eligibility requirements, they will inquire about private or state funding, and submit the paperwork. After that, they will send a nurse, music therapist, and possibly volunteers to help you care for her. Hospice helps the family and the patient. Just pick up the phone and call your local chapter. Hospice was a Godsend for my mother and I. So much so, that my mother's condition improved and she was discharged, for now. Prayers for you and your mother ~
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We put Grandma into a Hospice Program after a 1 week hospital stay and then a 1 and a half week of VNS coming and assessing that she doesn't need full time care... Mind you, Grandma was hardly eating and sneaking her food to the dog when we turned our backs, barely knew what day it was, and needed to be dressed by myself, mom, or aunt. VNS kept dening care, at home Hospice care was a final option because we got 4 hours through Hospice and the assistance to bring in 1 privately hired aid. Grandma took a major fall and refused hospital treatment and passed away shortly after. She was 4 weeks and 2 days of being on Hospice, grandma declined rapidly and passed away peacefully at home. Our aids were phenomenal in preparing us for her final days, they told us it was coming and did everything they possibly could to make my grandma comfortable.

Some people can be on Hospice programs for years and some are only on it for a short time. Talk with your mother's doctors to decide if it's time for a Hospice program. The hospice program my grandma was on, allowed her to go anywhere, but she had to stay close to home incase we ran into a problem and she needed medical attention, if she left the state and was to be admitted to the hospital, she would be dropped from the program and our process would start all over. Ultimately on her own, she knew if she went to the hospital after this fall, she wasn't coming home and her wish was to not die in a hospital. Against the rest of the family's wish, we honored grandma's wish and made the last 4 weeks very comfortable for her.

It's case by case, but when I read about hospice care, most families said they saw rapid decline in their loved one. If in your heart you feel that this is the beginning of the end, speak with mom's doctors and care advisors and see what they say. Best advice would be if Hospice is the only other option left, go with an at home hospice care.
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We brought in a hospice doctor a year before my mother died and before anyone would even think she "needed" one. It was recommended so that a relationship could be built and so when the time came, we weren't bringing in a completely new doctor at the end. It worked out very well. The hospice doctor came every other month or so to visit with my mom and check her out. She worked in conjunction with my mom's long-time primary care doctor. When my mom suddenly DID need a hospice setting, we were all ready with an established relationship with the doctor and the hospice organization. So even though you don't see the end right around the corner, it's not a bad idea to establish the connection now.
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How do you establish a connection or relationship with Hospice if your parent does not qualify at the moment. My mother can get around on her own but she does not want to eat and frequently says she will be glad when she is dead. We have a Gerontologist but honestly he is not being very helpful and is well honestly rude or curt in the way he speaks to me and I am her care giver and POA. Someone mentioned to me that I should have my mother evaluated for Hospice but I am pretty sure they would say it is too early for her.
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At least in New York State, hospice home care can be great and it can cause problems.

My first suggestion is keep in mind that enrolling in hospice is not irreversible. Many people eschew hospice because of its connotations. It can feel like giving up. It's not. It's just another service that might be optimal for your parent. And you can always quit it at any time.

Hospice visiting nurses are often great at addressing issues including pain management, wasting (extreme weight loss), and the psychological stress suffered by caregivers.

The biggest downside can be that joining hospice might trigger a reduction in home care services. In New York, at least, for the Medicaid/Medicare patients I treated as an RN, hospice was a "Medicare only" program. That meant that hospice could not bill Medicaid, and patients were limited to only the limited number of home health aide hours that their Medicare covered. Because Medicaid was so much more generous regarding HHAs, these patients often lost important services by joining hospice home care.

Research that issue with your doctor or a social worker. Of course, I don't know what insurance you have or even what state you live in. Just be aware that hospice can trigger some restrictive insurance issues-- But not necessarily in your case. I just recommend that you check it out.

Also, it sounds like you're handling this all on your own. I recommend that you look into getting an aide even if you don't go the hospice route.

The other issue about hospice is that you agree to forego any treatments that suggest an effort to cure or reverse disease. Be sure that you're not forfeiting treatments you want to continue using. I encourage you to speak with you doctor about this.

And finally (sorry to be so long-winded), joining a hospice program is reversible. If you decide you want to get more aggressive about medical interventions than hospice will allow, you can usually drop hospice at a moment's notice and go back to a more aggressive insurance plan. Again, this is something you might want to talk to your doctor about.

Good luck. It's a hard situation, but it really sounds as if your doing a terrific job with it.
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First, I'm not able to read you whole statement. It ends with "She is 90 and otherwise very healthy...". Understand what hospice is. This is a big decision. You may want to consider Palliative care. Hospice has many rules which may include no feeding tube or intravenous fluids (water), as well as limited medicine. Caring for Dementia people is extremely difficult. It is a burden. Palliative care is the step before hospice. Really, it's an ethical question. I have reservations on the way hospice deals with end of life. I looked to religion for an answer. I followed the concept of "no extraordinary means" to keep someone alive. This is a pretty subjective statement which can be interpreted differently. A doctor suggested hospice for my 87 year old father after his second stroke. He would have passed away in 4 weeks if he would have entered into the program, because he would have been denied medical treatment. He recovered from the stroke and lived lived another 10 months on palliative care. We enjoyed each others company those last few months. It was difficult to care for him. A doctor is just another person. They may not have the same moral ethical ideals as you do. Or, maybe they do. Just be sure you know what hospice is. I think palliative care is the proper route until the last few days. I like to guide the welfare based on the patients beliefs as opposed to the government run hospice organizations. Again, research what hospice is.
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I worked in Geriatric Research and the conclusion is many seniors do not get hospice when they need it. There are many doctors that won't tell you when it is time for hospice. You mother is not wanting to eat. There are many doctors that will tell you to put a G tube in via there belly button into their stomach. Their are many of Geriatricians who feel this is in humane. I feel when a person stops eating they are beginning to slowly let go. My mother died in 2011 and she was strict comfort care. No feeding tube. Etc. But, it is never to soon. Your mother probably will live beyond 6 month. But, Hospice always likes to meet them when they are well. If they feel they have longer than 6 months to live. Then they will periodically checkin with you and you can always call them. I see their are NH that don't practice good palliative care. If your love one is home or in a NH. I would call Hospice. My mother had hospice at home. It was a very nice and Hospice left me with a good experience.
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Hospice is an end of life program run by your Health insurance. Primary being Medicare. I live in Massachusetts. They are strictly no heroic measures. True if you want a doctor to do a heroic measure Hospice will back out. But, when an elder family gets to point that they are not going to get better. There are times families have to see their family member get better 2 or 3 times and then go back to their original status. This is prolonging death. I have seen it in NH for 32 years. Everyone has there own impression of comfort care and it may not be a belief of their belief. But, it can cause suffering. Hospice can always evaluation the situation. Hospice also has facilities that are very nice. They are the same cost of a nursing home per month. But, house will never turn anyone down due to lack of money. People make many donations. There is extra help by nursing asst too.
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Well, the first step is to consult her doctor. You cannot get hospice without a doctor's order.
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Call your mom's doctor and ask for an evaluation for Hospice. Ask others if they have used hospice services, which hospice group they used. Some are better than others. I just went through this and my mom passed a week ago today. Thinking of you.
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My husband and I have an appointment with Hospice at 2:00 today. I agree with the comment above that many people attach a negative connotation to the word Hospice. And there is a difficult emotional element to this decision. My husband is the patient(stage 1V malignant cancer in his brain and lymph nodes and heart etc) and I am the caretaker. We both want Hospice but his family feels we are givning up by asking for this. Well, they aren't the ones picking him up off of the floor after seizures and they don't seem to have little understanding or compasion for me as a caretaker. I find that soooo disappointing as I thought we all had a good relationship. It would help our healing process so much if they could be compassionate rather than judgemental. We have a home health nurse from the hospital who is coming with the hospice person on our first visit to enable a smooth transfer. My husband has seizures that cannot be treated by home health nurse - i have to take him to ER or dial 911. With hospice they can give meds for seizure and they can come after hours and on weekends. That is what made us sign up - doc did not suggest. We are using an herbal cancer fighting regime (not recommending this - just stating the facts). Anyway I don't understand why his family cannot understand the importance of getting this care. The alternative is that uncontrolled swelling leads to a fall and perhaps new trauma - we don't need any new medical issues. My goal is "to do what I need to do to live this season of life without regrets, but with choices that are fully fulfilling to my husband and I.
For my own self care I am listening to uplifting music in my earbuds, taking bubblebaths, petting my dog, doing iron yoga and planting seeds up in my greenhouse. I send my appreciation and support to all of you out there who have not heard the word 'thank you' or gotten that ever elusive kudo or a hug.
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I'd made the decision to put my mom in hospice. She passed from frontotemporal dementia last year.

I'd say call hospice when medical interventions will no longer help her. Make sure that the doctors/nurses explain what can be done to assist her, and that you comfortably understand her condition. In my case, I'd really grilled her doctor, and felt comfortable in my decision.
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Just talked to our geriatric care manager about this yesterday for our 86 year old mom who is barely eating and spitting out meds, lots of weight loss, living in a very nice residential care home but often refusing to cooperate. I was very pleasantly surprised at all the benefits of hospice services, all covered for free by Medicare. They can be started through either a doctor's prescription or "family request for evaluation directly through the hospice provider." My mother has a DNR and wishes for no life-sustaining methods undertaken. They said a team will be assigned to her, including a doctor, up to 3 visits a week for bathing and medication oversight, on top of her regular facility caring for her. It also includes spiritual and family preparation. The best benefit for her was that she most likely will never have to be hospitalized again, her biggest fear. Staff would call her hospice team before calling 911 and they would address the situation. With my husband's mother we found hospital staff were not equipped to handle dementia patients well and care was substandard. All personal doctor visits that she would have to be taken out of the house for would cease and are taken over by the home visiting doctor. Our care manager said it's a wonderful program, she knows the best services to recommend, and as I had heard so often, many families wait way too long to realize the benefit of such services and wish they had called much sooner. They are generally called when a patient is given six months or less to live, yet some go years past that getting recertified every six months for continued hospice care. Most facilities welcome the extra help and care that comes with hospice and work with their team. For our family, it sounds like the right decision. I believe my mother will have much more personal care than her doctor she sees every 3 months for 15 minutes, and I know the hospice team will particularly address any pain, comfort and medication issues she needs. Best wishes for you and don't hesitate to look into this choice. I was so pleasantly surprised at all they had to offer.
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This is from the mid 2000's so things may have changed but it is a list of criteria for eligibility for hospice for someone with dementia:
The following are the criteria for determining whether someone with dementia qualifies for hospice care:

a€¢ Unable to ambulate (walk) without assistance
• Unable to dress without assistance
• Unable to bathe properly
• Urinary and fecal incontinence
• Unable to speak or communicate meaningfully
• And suffer from at least one complication
– Aspiration pneumonia, Upper UTI’s, Recurrent fever after antibiotics
– Signs of a recent stroke
– Decubitus ulcers (multiple stages 3-4)
– Difficulty swallowing or refusing food.
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wwe called hospice on my fathers doctor's recommendation. that was almost 3 years ago. he did pass away at 94, and we had about 1 week notice. Refusing food may be a sign that she is nearing the end, but not always. refusing food could just be depression. hospice is good for keeping someone comfortable when they are nearing their end and making the transition peaceful. We seriously considered hospice the week my father passed. he passed before we got in to action. that translates that we didn't really need them. each situation is unique. if your mom has no serious health issues, she is probably not near the end.
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I have thought about this for my Dad. For me, I am a strong bodied person, it will be when he can't get up without help, or is bed bound. He is 190 pounds. At that point I will see about renting a hospital bed for the living room (TV and view of Yard) with help for bathing etc. I really hope he just stops living before it gets to this point, he would not like it. He turns 94 April 2. That goal has kept him going recently. I think after that, he will not feel like staying around.
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When I was primary caregiver for my mother-in-law, I belonged to a support group that was run through a local hospice. The women that run the group stressed that hospice loves to be able to help people live their life as fully as possible—that their mission is much greater than providing comfort to people on their deathbed. A hospice group supplied my mother-in-law with a transport chair so I could get her out of the house to go to the senior center, and with travel oxygen so she could go to the beach with her daughter. In other words, although hospice eases the process of dying, it also facilitates and encourages the process of living. Keep in mind, however, that a terminal diagnosis is a hospice requirement (with a life expectancy of 6-12 months). I have even heard of cases with a diagnosis of "failure to thrive." After my mother-in-law passed away, I wrote a book about caregiving, "What to Do about Mama?" It is a collection of caregiver stories that touches on many of the topics addressed in Aging.Com and other caregiving sites.
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Remember - with Alzheimer's, one does not have to be nearing the end, in other words, six months from death. A person just has to meet certain criteria. My mom was on hospice for over two years!
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Since you are asking the question of when do you know it's time, it's time. I don't think there is any such thing as calling in hospice too soon, it is usually the other way around. Bless you and your family.
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Hospice has a stigma, but now as bad as one thinks. However, depending on how you are using hospice. They can be on hospice for some time. It's not just because death is imminent. Usually they don't medicate as much. Perhaps check into palliative care before hospice. When I wanted hospice they said they would give my mom medication but caregivers do this already. They felt it would be better to call in hospice when the medicine serves no purpose and to make her more comfortable. Weigh both and see which one fits your loved one. Good thing you are "patting" yourself on the back! Only you can seek your own well deserved validation of a job well done and thank you! ;-)
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sorry for my typo now as bad should have been not as bad.
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Wisteria8: God Bless you and your husband. I think you both have done what needs to be done and it is a shame that others are so judgmental. Non care givers are very good at being that way, they are not in the trenches with you. Perhaps you could enlist them to come and help so they can see the care that is being provided and know that you are doing the best that you can for your husband! Well done, thou good and faithful servant!
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To be able to be eligible for hospice care, you should meet two conditions; your doctor must indicate that your life expectancy is less than 6 months, and your condition is considered fatal and incurable. Normally, the doctor signs a form indicating the condition of the long term care recipients as explained in infolongtermcare.org

Unless your mom meets these condition, then hospice is not advisable. And as you have stated she is 90 and otherwise healthy, so you might want to think that over because hospice care usually deals with long term care recipients who are terminally ill. But if there is a need for hospice, you should be able to get it sooner before it is too late. I suggest you talk to her doctor.
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Hospice is run differently in various communities. Their requirements, service, timing, structure etc. varies depending on your local factors. So, what you hear about on this website...people's personal experiences with Hospice where they live...may not hold true or accurate for Hospice in your area. For instance, my niece, in a neighboring state, saw hospice reps daily...all day...for weeks for the care of her grandmother and a couple years later, her father-in-law. However, where I live, they could only come to the home 1-hour per week for in-home attention, due to lack of staff/volunteers. My local chapter's main focus is in-patient (hospital) hospice care which is staffed by hospital nurses. A hospice volunteer visited briefly once a day. This care was for my husband, whose doctor even thought our local Hospice could/would provide more extensive care than Hospice told me they actually could provide. So, you need to get info from your local Hospice...the "horse's mouth"...so to speak.

You need to contact your local Hospice chapter to find out how it works there and what they can offer where your mother lives. They will evaluate what your mother needs and what-when-how they can provide any help. Good luck to you.
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Just on the financial-legal end first. I see nothing in your original post that suggests any med pro has suggested hospice. While hospice/pallative is generally viewed as a family decision it isn't only a family decision as Medicare does not just pay for hospice without a tier of med pros ordering it. Those med pros will not order it unless they think the patient has 6 months of less to live. As for the choice for hospice being reversible I think it will depend on the place hospice is being provided in how quick or easy it is to dc hospice. My only experience with hospice is in a NH setting. In that setting there are all kinds of reasons why it might be hard to impossible to quit hospice once on it. The main reason being that the NH at the point you are quitting hospice would not feel equipped to care for the patient w/o the hospice support financially or medically or legally. In other words what if patient quits hospice & dies on their watch? Financially can they meet the patient's needs w/o hospice having been on them since that was what was paying for all her equipment & care. It would be near to impossible to find an accepting NH at that point if she were dumped because of the decision to D/C hospice. I can see other settings where reversing would not be a decision made easy on the patient/family. All patient's rights are not always observed, enforced or possible. As for whether hospice is a good idea I hardly ever lean towards pallative or hospice in regards to my parents. There can be a million reasons I can think of for a patient not to be eating. If not eating is a new problem it would be unwise to rush into hospice w/o ruling out treatable reasons for a lack in appetite. A new med or drop in med would be the first thing looked at by me anyway. A UTI. Any kind of infection like pneumonia, even a cold. Is she refusing fluids or having trouble swallowing or digesting them. If not then it could be due to anything that she isn't eating much.

The only way to start hospice is to get a doctor to write an order for a hospice evaluation. If the hospice agency says yes she is eligible then the patient/family decide on which hospice agency. Then if the family says yes to having hospice then either the original ordering md or the hospice md have to write another order to have medicare pay for the hospice because that order states Med. necessity. Neither order can be written by the doctor unless he thinks she will be dead in 6 months. Even though the agency would love to get to them early it usually won't work that way as most mds won't write the order even for the eval.
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even though I do not care for the idea of hospice or pallative I have tried twice to order hospice for my dad when the alternatives were not sounding compassionate & I (as his POA) was not effective in getting a hospice (6 months) order in either case which would have saved him alot of medical hell. Now I am very grateful that I did not get the orders for hospice evaluation that I tried to because he is finally getting back to alertness after months & is having some quality of life. He is eating well. He hoyer lift with 2 aides for a while into chair, then he became one aide transfer for a month or so, now he is almost self-transfer. He had lost 16 pounds in one week while refusing to eat for a month. Now he eats like a horse again & has been receiving PT for 120 days now & is becoming stronger. The MDs knew he was not a lost cause. I simply wanted it because he has alzheimer's & I wanted to skip the med hell he had to go through to get here. As POA, I was not allowed that decision. So it is not a family decision or patient decision because it is not a free service.
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In any case if you are successful in getting hospice for the love of God please PLEASE do not involve Vitas. They are the largest hospice provider in the US & they are horrible. That was the agency I had on mom for 1 week in a week she was in a drug induced coma. They were extremely negligent on care. I have heard horror story after horror story from others that tried Vitas & they had to switch to another agency. A couple of good ones in my local area I have only heard good things about are Hospice Plus & Grace Hospice however they may be local & there may be one by the same name in your area that is not as good. I would suggest doing alot of homework from talking to caregivers locally before choosing which agency. Do not ask alot at the agencies because they are sellers.
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You can call hospice anytime. They will come out and make an evaluation. If they feel your mother is not a candiate. Then they wont take her on as a patient. But, it is nice for them to know her. Also, as her caregiver how aggresive do you want to be in her treatment. Do you want a full code. Would you want a feeding tube etc. any heroic life saving measures would not make her a candidate. My mother had dementia for 12 years. I was her Health Care Proxy. I wanted my 3 siblings involved in what I and her physcian thought would be the best care. I worked in Geriatrics and I saw the bad decisions family made until they decided to keep their loved one just comfortable. I wanted this done years before so everyone would be on the same page when the time came. I told my family we could do it together or I will do it alone. We all sat down with my mother's Geriatric MD. The first question asked was about CPR. The doctor told my family if my mother where to have CPR. She would not come back as she was. That pretty much put everything into reality. No one gets better from Dementia. They eventually die from it. I made my mother a DNR, DNH Which means no CPR and do not hospitalize. DNH does not include my loved one fell and needs sutures or they broke a bone. But, to continue. My mother was also no feeding tube. Comfort Care only. My mother got weaker and weaker and fell down the stsirs years after my family had the meeting with the doctor. She had spilt her head open and was taken to the hospital and admitted to the trauma unit. The second day I called hospice and i met with them. It was decided my mother would go on hospice. I brought my mother home and went out to buy a bed so I could be right next to her when she needed me. Hospice came and brought all her medication and her Comfort Care box of medication which they explained how to use. I also had my 40 hr girl who came from an agency through Medicaid. The key is for the patient to have less than $2000 in their name. Apply for medicaid for home services. Just call your local aging care home care agency. They will help you with Medicaid. This is not Nursing Home Medicaid. But, a Medicaid for low income people. My mother owned her own home and this Medicaid does not attach to the home. We did this 6 months before she really got sick. We only had a couple days a week. Once they become bed bound they would get 40 hrs of service. I was lucky the first time to have the woman. You may go through a few. Hospice will give you 16 hrs of service per week. You can use them for when your regular person has a day off. My mother was on hospice for 6 months and then she had a peaceful pain free dignified death in her own home. If I had to do it over again. I would do it the same way again. No regrets! My mother had dementia for 12 years. I lived with her the last 8 years
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Kathleen225 - about your sentence "This is not Nursing Home Medicaid. But, a Medicaid for low income people. My mother owned her own home and this Medicaid does not attach to the home." this may not be correct. Medicaid's MERP (Medicaid Estate Recovery Program) is not limited to just $ paid by Medicaid to a NH for a Medicaid recipient. In many states, any mental health care programs, home health care programs or other long-term Medicaid paid for program for those over 65 can be within MERP's review. You should Google your states Medicaid to see what programs are within MERP review for repayment. In my mom's state (TX) both mental health & community based provided @ home services are subject to MERP. Now whether or not, MERP goes after their claim or lien on the estate really depends on how your state runs it's MERP program and how your state views property rights, death laws and probate. If you inherited your mom's house, you may want to make sure that there is no possible MERP claim or lien that could be an issue later on - you can get a title company to do this for you. It would be awful if years from now you want to sell the house and find there is MERP claim decades old that has to be lifted to sell the property.

Medicaid for any maternal health programs or kids programs - like WIC - is not under MERP. But most states have MERP allowed for any long term provided service for the elderly as MERP is designed to be done via probate.
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