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I have no help. She is on Medicare and I cannot afford a nursing home. I am at a point where I don't know what to do for her. If I bring her to hospital they will just release her. Please, any advice?
Cindy and Lisa, just now reading this post. Hoping you can check in and let us know how it's going. For what it's worth, I as well as many others sympathize and support you!
Good answers on here. If your Mom doesn’t have money, apply for Medicaid for her. Visit nursing homes that accept Medicaid. Admissions person at the nursing facility will tell you what you need too. Many assisted living facilities do not. I went to the local Medicaid office in person and talked to a representative but that was 5 years ago. Now, in my state, they don’t do in-person. You call the toll free number. First stops should be a nursing home and if you have about $300.00 to invest in a consult with an elder law attorney, please do so. Worth every cent. I ended up going 4 times over 4 years.
You have some great suggestions here. As a former Dir. of Admissions and a current Cert. Assist. Living Admin. I just want to emphasize a few things that have already been said and add a little more info. Medicare is not designed to pay for long term custodial care. The big payer on that front is Medicaid in every state. The administration of Medicaid varies from state to state so as has been suggested, get in touch with your state office and find out what the particulars are for an application. In NJ, the person who is applying has to have no more that 2000.00 in assets. Start working now on some of the paperwork you will need to provide to the Medicaid office in order to get your Mom approved financially (she will still need to be approved by the state's Medicaid nursing staff) - birth cert., marriage license, divorce papers, death cert. for a deceased spouse, rent/mortgage receipts (in NJ they require a five year look back but your state might be different). Be prepared to answer the following type of questions - whose home is Mom residing in now, her's or yours? Are you employed (most professionals would strongly urge you NOT to use your own funds to care for your Mom. Use up your own funds on Mom and what happens to you in a medical emergency)?? If you are employed, you certainly can not be home to give Mom the time and care she appears to need but like a previous poster, I hesitate to advise you to do a hospital dropoff. Yes, they may find her a place if there is nothing they can do for her medically, but you will still have to apply for Medicaid and you will lose the ability to even begin to choose the facility. It could be on the low end of the scale or it could be far away. Some Day Care facilities take Medicaid and have a memory care program (not all do) but you may have to get on a list. Many Assisted livings have memory care but remember....assisted livings only give an "assist"; if the person gets to the point where they need more than an "assist", they will need to go to a long term care facility. I would be careful in "liquidating assets" at this point, Don't use Mom's money to buy a new car in her name as the state medicaid office could consider this a "transfer of assets to qualify for Medicaid". In NJ, they will impose a penalty of time without Medicaid assistance - the equivalent of saying you are not eligible to receive Medicaid assistance for the next x months. As low as the Medicaid payment is to the LTC facility, it is impossible to get into one if they know they are not going to be paid for x mos! You might want to call your Office on Aging and see if they can recommend an Elder Care (EC) attorney. Yes, they are expensive but many will offer a free 15 min consultation. Have your questions written down and take a trusted friend with you who can help you remember things and ask other questions that come up. Just so you have a point of reference in NJ the average LTC costs run about $9000/mo or $300 per day per person on private pay. They will be lucky if they get $200 per day for the Medicaid recipient. Considering the costs of running a facility - gas, electricity, phone, maintenance (those floors have to be done everyday), dietitian (required in NJ), cooks and kitchen staff, social workers, Dir of Nursing (required in NJ), laundry staff and equipment, food, generator (required in NJ) maintenance, accounting staff (someone has to keep track of the residents personal needs accounts, etc), activities staff (required in NJ) not to mention the upper level nursing staff who give medications and perform the critical skilled nursing duties involving IV/s , wound vacs - well you can see it is an expensive operation. Notice we haven't even gotten to the worse paid staff who perform the basic ADL care like feeding, bathing, transfers and toileting. - those folks are frequently paid $15 or less per hour. Please get started on the Medicaid piece asap. Hugs to you, stay strong, you'll thru it.
Happy to see someone "in the know" back up what I have tried to inform others about when they are aghast at the cost of facility care - there is more to the equation than just your LOs care, a LOT more! I also feel so bad for those who are in the trenches, handling the actual day to day, hour to hour tasks and probably get some of the lowest pay in the facility!
What people also don't consider is that home care (it varies by state/region, but let's just call it $20/hr) may sound less expensive, and it can be if you don't need 24/7, BUT you have to factor in rent or RE taxes, utilities, food and all other costs associated with living in your own place. If a person needs 24/7, it will actually be a LOT more expensive to hire home care and keep them at home (never mind the logistics such as what happens when someone doesn't show for their shift, can one person do the tasks needed, etc.)
If the cost is of no concern and you can find good reliable help, go for it! Keep mom or dad or spouse at home and let them finish their days in their home. If you are not independently wealthy and can manage physically and emotionally, sure, go for DIY. For the rest of us, we can only hope that there are funds, either personal or Medicaid, to cover the costs!
When my mom was first diagnosed and still lived in her home alone, she would often tell me when she woke up that she didn't know where she was. As your moms dementia gets worse, she will say lots of things that will be scary and unbelievable. I am sorry you are dealing with this...it is not easy.
My aunt had MS and was in her home and my uncle could no longer manage her care. She was like dead weight and he couldn't get her bathed properly and things were getting hairy. They couldn't find a nursing home on their own, so they basically took her to the hospital and said she needed care and had no where to live. The hospital assigned a social worker to place her in a nursing home. I know it's not ideal, but .....
Many times my mom has not known where she is. It has usually been a UTI that caused it. She is not ever totally sure where she is and what is going on, but it gets really crazy once in a while when she wants to go home to where she raised us kids, which is in a different town than where she's lived for the last 40 years. So take her for a urinary test first and if that is it and it clears up maybe she'll be better, but probably still in need of a facility soon. Find out if she qualifies for medicaid, and if she does, start looking for a facility that accepts it. Try to not panic over this setback. Just go through some steps to find a way for her to be cared for when you can't do it any longer. Maybe that is now, in which case there are others advising here on what to do.
I second the motion to test for UTI. You could start with a home test - if positive, definitely get a full test, preferably a urine culture. If home test is negative, you could still request a test from the doctor - no harm no foul, it would at the least rule out UTI.
I was skeptical about UTIs and odd behavior in elders/dementia patients until it happened to mom. First was a severe case of sun-downing, later afternoon/early evening. She needed to take Lorazepam (anti-anxiety) while being treated (note during the morning and early afternoon she would be fine!) More recently she developed night-time bed-wetting, which turned out to be UTI related (once treated it went away until the next occurrence of the UTI! Now the nurse is aware of this, finding mom on the floor in her BR/or evidence of wetting leads right away to a test! She ends up on the floor as a few months ago would not stand/walk without help, but tends to forget in the middle of the night and tries to get up to go!)
If this is ruled out, clearly mom needs to be in a facility. Medicare doesn't cover LTC. If she is very low income, she might qualify for Medicaid. If possible, work with EC attorney ( zip entered in https://www.naela.org will give you a local list - many will offer an initial no cost visit. depending on mom's funds, you may need to find a low cost or no cost alternative.) They can help you navigate the Medicaid maze. If not, perhaps the doctor's office can point you to someone like a social worker who can help?
Also note that often (depends on the state you live in) Medicaid only covers NH and your mother may not qualify (skilled nursing care may be required, and dementia alone isn't enough.) However, many states Medicaid can provide some $ for home health aides. Certainly not 24/7, but ANY help is better than none!
I would hesitate to recommend the ER drop. IF there isn't something specifically wrong, they could send her home, even in a cab! This is not what you want. Depending on the hospital, this may not ever get you where you need to be. Even IF they admit her, it could be for observation only, and could result in some serious medical bills that won't be covered. Be wary of taking this route, UNLESS she has a specific medical need.
As the other members have mentioned, look into applying for Medicaid. Depending what state you're in, rules may be different. Be sure to have all her documents, (if you have them) available, just in case there is the 5 year look baCK. You'll have to decide if you want to go to the interview or have a trusted person, if you know/can find one go in your place. I believe the Medicaid you would be applying for is the one for Nursing Homes.
Good luck and Sorry that your mom is going through this.
At some point medications no longer work for dementia. It seems your mom has reached this stage. Decide if you want to care for your mother at home or if her care is more than you can handle. If the latter, sell her assets, apply for Medicaid, and find a nursing facility that accepts Medicaid clients.
Liquidate any assets mom has immediately and apply for Medicaid. Even if she does not qualify ...do this.... Take her to her Primary Physician for an appointment and explain to her Dr. that you need help....you work and need assistance with taking care of her. From there the state should come to your home and assess her...have her meds handy and a list of ALL her ailments. This should assist with getting someone in to assist her with bathing, getting dressed, grooming, cooking, etc. I have my 85 year old dad with me and he gets 17 hours a week of care provider help and it's good for both of us. You can do this☺️
My 89 year old mother has lived with me for 10 years. I recently, with her applied for a Medicaid Waiver for her. Then looked around at Assisted Living facilities. Contact your local Area Agency on Ageing and they should be able to help you with the process. In Ohio she would need to pretty much have no assets and keep her bank account under $2000.00. My mother moved out before Christmas and loves it. Good Luck
I am so sorry that your mom has dementia - a sad miserable disease for sure. And I am sorry you are alone to care for her. Does your county have a Commission on Aging? Ours has 2 programs currently - Respite & FAIR. Does your mother qualify for Home Health? What about Palliative Care Hospice or Hospice? Does she have any other type of insurance (some have purchased plans that will cover caregiver cost)? And finally is hiring private care an option (even if it be for a few hours)? You will need to have some down time for sure. Don’t be afraid to reach out and ask for help, talk to others who have been or are going through this, talk to her doctor & educate yourself on this disease. My mom developed a UTI a few months back which seemed to be the start of a severe downward decline-blood clots, hospitalization, sent home on Home Health, then Palliative Care Hospice and now Hospice. She, per Hospice assessment, is in the final stages and I have to admit that I regret my fears and apprehensions during those previous stages because as each stage passes her mental & physical abilities slip away more and more. Please reach out to the facilities mentioned on this site - you and your mom deserve all the help you can find! Love & Prayers!
To give yourself a break is there an Adult Day Care near you? If so that is a great option it will give her a place to go and you will have a bit of time for yourself when you don't have to worry about her. Would she qualify for Medicaid? If so that might be an option and then get her on a list for a Memory Care facility that accepts Medicaid. (some Memory Care facilities also have Adult Day care) If she is hospitalized you could talk to a Social Worker there and tell them that you are at the end of your rope, you can not safely care for her, you are concerned about her safety as well as yours. And by hospitalized I do not mean you bring her in for no reason..as they will not hospitalize her it would be an "observation". By the way the dementia medications like donepezil (Aricept) do not work forever.
Don’t listen to demands of mother when you take her to hospital to take her back home. Tell Dr in ER you want & need help...you have terrible back pains/headaches from caring for her & unable to help her anymore. Also you are unable to guarantee her safety in the house. Speak to Social Worker at hospital. Don’t let them discharge her to home. Good luck...& Hugs 🤗
Cindy I'm sorry you are alone. My Mom is almost 101 and has dementia, is bedridden, cannot hear or see well, along with CHF and a few other health issues and although I have siblings they refuse to do anything. They are wealthy and I'm not. Sometimes feel like I am losing my mind and do know I am losing my health both physically and mentally. Friends have given up on me being able to do anything so they have left and my social life has been zero for a long time. Have never cried so much in my life as in this past week. Have never done so many laundries and made a bed so many times nor cooked so many meals that go mostly uneaten. I understand the "don't know what to do". I take her to the Dr and they say "she's old, this is all to be expected" with no suggestions of what to do. They gave me pills to lower her agitation and they make her MORE agitated. If I take her to the hospital they will admit her, she will go through hell again and be worse when she comes home. And so I suffer and wait. This next week for the first time in 20+ years I have someone coming in to give me a 4 hour break once a week. I don't even have the energy to think of what to do in those 4 hours. So my dear, I have nothing to offer but "I understand and know how tough it is when you do 24/7 care and are worn to a frazzle". Can you find any good person who would come and give you a break once a week? As I haven't yet experienced it do not know how much of a help it will be, but right now it is a light in a very dark tunnel. Thinking of you!
So sorry you are going thru this also. Thank you for your very kind words. Its so sad when people abandon you and your watching your parent waste away. This disease is brutal. A once active vibrant women reduced to this. Never an unkind word for anyone. This condition has taken everything away from her. I try to stay strong. Please try to do same.
I would tell you to contact her doctor and see if she would be eligible for hospice. This was our only resource because Medicare will only pay for home help for a while. With hospice, they can renew it if the person even loses one pound of weight, or if the dementia seems to be getting worse. They can help you get her into a nursing home also, if it comes to that.
Donepezil, at best, decreases the slope of the decline for a while but with a sharp fall off at the end. So whether someone is on it or not, the endpoint is the same.
As others have said, if she can't be cared for, get her to an ER and then don't accept responsibility for release. They'll have to deal with it. Hopefully there aren't any issues with getting on medicaid.
Unfortunately, the hard truth is that no medication really keeps dementia “in check”. You need to determine IF you are financially responsible for her care. If she has any funds or real estate, they will need to be liquidated to pay for her care if she needs residential placement. Why were you considering taking her to a hospital? Do you consider her to be in need of full time care? Who wrote the prescription for the medication? Will that person give you a written statement about her cognitive status? If she is unable to take care of her personal needs/safety, you will need to find out what kinds of services are available for her in your area.
This is very tough to consider when becoming the caregiver of a dependent adult. If you provide some more information you will find that many will provide general information to help you get started.
Have you investigated Medicaid for your mother? Medicare is not the answer. Take her to the ER and make it clear that you cannot take her back home. Have social services find a nursing home for her and apply for Medicaid.
If you are unable to care for your mother at home, please take her to the ER. This could be something as relatively easy to fix at a Urinary Tract Infections, or could be a reaction to medication or a need to medication change. If there is no change do not take your mother back into care in your home if you feel unsafe doing so. Ask for the social services to intervene and seek placement for your mother. They can often do the financial circumnavigation much more quickly than you can. And will see to some safe placement for your Mom. It may not be the Hilton, but if you are unable to safely care for your Mom do not accept her back home into your care. You will have to be strong enough to withstand manipulation because basically they will do just a out anything to get her out and back with you including promises they will NOT keep for instance "We can make this work" (they can't) and "We will get you help". They won't. Or it will not be enough.
This is very true! They will promise you the moon to get you to take a person with dementia back home. The hospital pulled that on me with my husband earlier this year when he fell out of bed, cracked a vertebrae in his back & could barely move. Along with this came incontinence & they encouraged him to just pee in the bed so they wouldn’t have to change diapers. Then they convinced me to take him home with NO HELP (I’m alone with no family or friends) just shy of the 3 days required to get Medicare Part A to cover paying for him to go to a rehab facility so I could get a freaking BREAK.
They told me that someone would call on Monday because it was the weekend. DAYS later, they said a facility wouldn’t be covered & started sending these two-bit “therapists” from an agency, who clearly had no experience dealing with dementia, to try & get him to do exercises. Half the time they wouldn’t even show up; the others they’d be late, so I’d be late for work.
I’d call & call to speak to someone in charge and get nothing but indifference. I ended up having to hire a private care person & fill the house with cameras to avoid being robbed blind or have my husband being mistreated. They want $20+/hour, and It’s hard to find anyone reliable. I just had the last one give notice that she’s leaving, right before Christmas.
If you have a dime to your name, you can’t seem to get any help. I got a social worker to come just once, and she took one look at my house & said we’re not going to qualify for anything, assistance-wise. The plan seems to be to get every dime out of the person and their family until they are broke, and THEN you can get on a list to wait for public assistance. I actually had a service tell me to cash out MY retirement from work to pay for a private care facility for my husband, because his pension and social security wouldn’t be enough. $7,000+/month for private care facility that smells, and the residents live in glorified jail cells. I just have no idea what to do except pray for a quick end.
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Medicare is not designed to pay for long term custodial care. The big payer on that front is Medicaid in every state. The administration of Medicaid varies from state to state so as has been suggested, get in touch with your state office and find out what the particulars are for an application. In NJ, the person who is applying has to have no more that 2000.00 in assets. Start working now on some of the paperwork you will need to provide to the Medicaid office in order to get your Mom approved financially (she will still need to be approved by the state's Medicaid nursing staff) - birth cert., marriage license, divorce papers, death cert. for a deceased spouse, rent/mortgage receipts (in NJ they require a five year look back but your state might be different). Be prepared to answer the following type of questions - whose home is Mom residing in now, her's or yours? Are you employed (most professionals would strongly urge you NOT to use your own funds to care for your Mom. Use up your own funds on Mom and what happens to you in a medical emergency)?? If you are employed, you certainly can not be home to give Mom the time and care she appears to need but like a previous poster, I hesitate to advise you to do a hospital dropoff. Yes, they may find her a place if there is nothing they can do for her medically, but you will still have to apply for Medicaid and you will lose the ability to even begin to choose the facility. It could be on the low end of the scale or it could be far away. Some Day Care facilities take Medicaid and have a memory care program (not all do) but you may have to get on a list. Many Assisted livings have memory care but remember....assisted livings only give an "assist"; if the person gets to the point where they need more than an "assist", they will need to go to a long term care facility. I would be careful in "liquidating assets" at this point, Don't use Mom's money to buy a new car in her name as the state medicaid office could consider this a "transfer of assets to qualify for Medicaid". In NJ, they will impose a penalty of time without Medicaid assistance - the equivalent of saying you are not eligible to receive Medicaid assistance for the next x months. As low as the Medicaid payment is to the LTC facility, it is impossible to get into one if they know they are not going to be paid for x mos! You might want to call your Office on Aging and see if they can recommend an Elder Care (EC) attorney. Yes, they are expensive but many will offer a free 15 min consultation. Have your questions written down and take a trusted friend with you who can help you remember things and ask other questions that come up.
Just so you have a point of reference in NJ the average LTC costs run about $9000/mo or $300 per day per person on private pay. They will be lucky if they get $200 per day for the Medicaid recipient. Considering the costs of running a facility - gas, electricity, phone, maintenance (those floors have to be done everyday), dietitian (required in NJ), cooks and kitchen staff, social workers, Dir of Nursing (required in NJ), laundry staff and equipment, food, generator (required in NJ) maintenance, accounting staff (someone has to keep track of the residents personal needs accounts, etc), activities staff (required in NJ) not to mention the upper level nursing staff who give medications and perform the critical skilled nursing duties involving IV/s , wound vacs - well you can see it is an expensive operation. Notice we haven't even gotten to the worse paid staff who perform the basic ADL care like feeding, bathing, transfers and toileting. - those folks are frequently paid $15 or less per hour.
Please get started on the Medicaid piece asap. Hugs to you, stay strong, you'll thru it.
What people also don't consider is that home care (it varies by state/region, but let's just call it $20/hr) may sound less expensive, and it can be if you don't need 24/7, BUT you have to factor in rent or RE taxes, utilities, food and all other costs associated with living in your own place. If a person needs 24/7, it will actually be a LOT more expensive to hire home care and keep them at home (never mind the logistics such as what happens when someone doesn't show for their shift, can one person do the tasks needed, etc.)
If the cost is of no concern and you can find good reliable help, go for it! Keep mom or dad or spouse at home and let them finish their days in their home. If you are not independently wealthy and can manage physically and emotionally, sure, go for DIY. For the rest of us, we can only hope that there are funds, either personal or Medicaid, to cover the costs!
My aunt had MS and was in her home and my uncle could no longer manage her care. She was like dead weight and he couldn't get her bathed properly and things were getting hairy. They couldn't find a nursing home on their own, so they basically took her to the hospital and said she needed care and had no where to live. The hospital assigned a social worker to place her in a nursing home. I know it's not ideal, but .....
I was skeptical about UTIs and odd behavior in elders/dementia patients until it happened to mom. First was a severe case of sun-downing, later afternoon/early evening. She needed to take Lorazepam (anti-anxiety) while being treated (note during the morning and early afternoon she would be fine!) More recently she developed night-time bed-wetting, which turned out to be UTI related (once treated it went away until the next occurrence of the UTI! Now the nurse is aware of this, finding mom on the floor in her BR/or evidence of wetting leads right away to a test! She ends up on the floor as a few months ago would not stand/walk without help, but tends to forget in the middle of the night and tries to get up to go!)
If this is ruled out, clearly mom needs to be in a facility. Medicare doesn't cover LTC. If she is very low income, she might qualify for Medicaid. If possible, work with EC attorney ( zip entered in https://www.naela.org will give you a local list - many will offer an initial no cost visit. depending on mom's funds, you may need to find a low cost or no cost alternative.) They can help you navigate the Medicaid maze. If not, perhaps the doctor's office can point you to someone like a social worker who can help?
Also note that often (depends on the state you live in) Medicaid only covers NH and your mother may not qualify (skilled nursing care may be required, and dementia alone isn't enough.) However, many states Medicaid can provide some $ for home health aides. Certainly not 24/7, but ANY help is better than none!
I would hesitate to recommend the ER drop. IF there isn't something specifically wrong, they could send her home, even in a cab! This is not what you want. Depending on the hospital, this may not ever get you where you need to be. Even IF they admit her, it could be for observation only, and could result in some serious medical bills that won't be covered. Be wary of taking this route, UNLESS she has a specific medical need.
Good luck and Sorry that your mom is going through this.
Would she qualify for Medicaid? If so that might be an option and then get her on a list for a Memory Care facility that accepts Medicaid. (some Memory Care facilities also have Adult Day care)
If she is hospitalized you could talk to a Social Worker there and tell them that you are at the end of your rope, you can not safely care for her, you are concerned about her safety as well as yours. And by hospitalized I do not mean you bring her in for no reason..as they will not hospitalize her it would be an "observation".
By the way the dementia medications like donepezil (Aricept) do not work forever.
Good luck...& Hugs 🤗
As others have said, if she can't be cared for, get her to an ER and then don't accept responsibility for release. They'll have to deal with it. Hopefully there aren't any issues with getting on medicaid.
You need to determine IF you are financially responsible for her care.
If she has any funds or real estate, they will need to be liquidated to pay for her care if she needs residential placement.
Why were you considering taking her to a hospital?
Do you consider her to be in need of full time care?
Who wrote the prescription for the medication? Will that person give you a written statement about her cognitive status?
If she is unable to take care of her personal needs/safety, you will need to find out what kinds of services are available for her in your area.
This is very tough to consider when becoming the caregiver of a dependent adult. If you provide some more information you will find that many will provide general information to help you get started.
They told me that someone would call on Monday because it was the weekend. DAYS later, they said a facility wouldn’t be covered & started sending these two-bit “therapists” from an agency, who clearly had no experience dealing with dementia, to try & get him to do exercises. Half the time they wouldn’t even show up; the others they’d be late, so I’d be late for work.
I’d call & call to speak to someone in charge and get nothing but indifference. I ended up having to hire a private care person & fill the house with cameras to avoid being robbed blind or have my husband being mistreated. They want $20+/hour, and It’s hard to find anyone reliable. I just had the last one give notice that she’s leaving, right before Christmas.
If you have a dime to your name, you can’t seem to get any help. I got a social worker to come just once, and she took one look at my house & said we’re not going to qualify for anything, assistance-wise. The plan seems to be to get every dime out of the person and their family until they are broke, and THEN you can get on a list to wait for public assistance. I actually had a service tell me to cash out MY retirement from work to pay for a private care facility for my husband, because his pension and social security wouldn’t be enough. $7,000+/month for private care facility that smells, and the residents live in glorified jail cells. I just have no idea what to do except pray for a quick end.