My Mom has memory loss. Where does she really belong?

There are many excellent continuing care facilities, it just takes time to find the right one that you feel comfortable placing your Mother.

As for "the Government should give them the care they need not just because of the age but because they were a Mother and or Father at one time they all deserve the very best of care"..... are you saying those of us who never had children but are caring for our own parents, that when we ourselves get older we don't deserve the very best care? Please reconsider.

You should not feel guilty if you are seeing her regularly and checking on her care. If you think she needs help bathing, make sure she has an order for that. If she bruises easily get an MD order for body checks. Special diet? written orders. Get to know the head nurse and make her your friend. That way it works out OK for mom. She won't be alone, she will be with friends her own age. Just like school.

You speak of “In a nursing home? Or Alzheimer's/Dementia place?”
Help me out here. What do you define as a Alzheimers/Dementia place ?

Here in the Boston region there are assisted living facilities and nursing homes, some hospitals, congregate living homes that have "memory care units" with a number of different labels such as Alzheimer's units or dementia units etc.

Each has it's own unique staffing and management structure.

For te first time I am involved as the husband of a a ALZ wife who is a patient at a large skilled nursing home rehab unit. It is a different world.

The unit is managed by a RN supervisor at the nurses station. In contrast to the hospital that sent her to rehab. At the hospital there was a "medical team", a hospitalist, a head nurse, a case manager and a nursing station with support people. At the local aging org case mangers were resources for clients, at this hospital the case manger handled discharge arrangements not patient care.

At the NH rehab I am discovering the care plan is handled by the PT's OT's, Speech T's. The NH has a doctor who drifts by periodically every few days, and the daily medical support if by a nurse practitioner. Patients have a RN and most activity seems to be by a flock of aids.

I feel like a fish out of water trying to find the chain of command and which person can tell me what is planned for my ADW.

I am also learning there are financial support programs funded by the state and federal gov. A whole new world of acronyms and players. I have ECOP what ever that is, and my attorney is helping me file for Frail Elder support.

My advice for anyone over twenty years old have an elder affairs attorney as an adviser and get all the HIPAA and POA's done ASAP. Know who to call at the executive level of health care organizations.

There is an awful lot of BS with these organizations. My ADW was taken by Ambulance to Newton Wellesley Hospital. The switch board said HIPAA required my to come to the hospital personally they could not tell me if she was at the hosital or where she was over the phone.

I get informed by discussion groups. I came home and set up a group to discuss: Client Focused Health Care Providers: Physicians, Hospitals, Nursing Homes, and Other Care Services http://tinyurl.com/nk47ezg 

Make friends at the facility, know your power.

I feel for you. I have been looking after mom alone for 2 years. I am 63 no other family.period. I hate nursing homes, all understaffed and like you can't afford assisted living. I guess before long it will be nursing home and I will have to practically live there to make sure she is being looked after. Money does matter in the care they get and no one can tell me different. I am retired nurse.

First of all, I am sorry you are having a hard time getting your mother into a nursing home you deem proper, but as a nurse I resent your assertion that ALL nursing homes are bad, and that professionals do not take care of your loved one. Your mother has a terminal illness, does not really know where she is nor who takes care of her. She may have moments where she remembers, but this disease always ends in death. Thank you for taking care of her for five years, but the government is not responsible for everyone's healthcare and provisions should have been made when one was younger to ensure there was money enough to take care of long term care. Keep visiting your mother and love her for the time she has left, and be grateful there are professionals willing to do this kind of work for you and your mother.

I think we're all in the same boat on this site. We need to help and support each other. OP, what I think I hear you saying is that you would love to be able to put your mom in the memory care unit of an assisted living but you can't afford it. Therefore, she is in a NH you are not happy with. I'll comment on both. As dementia progresses, and care needs increase, assisted livings are not equipped to properly care for our loved ones. If course, they won't tell you that. To boot, they nickel and dime you for everything. Bathing assistance and medication reminders are all an up charge and if you need more one on one care, they tell you to hire an aide. If you're not happy with your mom's nh, do more research and find another.

Continued. Call a lot of local nhs and ask if they have a "secure dementia unit." Everyone working in that unit will have been trained to care for ppl with dementia. It makes a difference. If they do, ask to schedule a tour.

As for money, everyone in a nh is on medicaid eventually so it's not as if you can't get into certain nursing homes because of inability to pay. On the other hand, I suspect that my mom was not accept at a couple of homes because her monthly ss, which would go to the home, was not that much and she no longer had assets they could attach. Nonetheless, she was accepted at one of the better nursing homes in our area and she has a private room. The aides are nice, the food is good, and blessedly, she has friends she can relate to. She's actually happier than she's been in years, so it is possible. But to get here, I contacted 22 facilities, toured 16, applied at 4, and waited 2 months. Good luck to you and keep us posted!

Try to find a 6 bed ALF. They have two staff members, which is a great ratio for excellent care. I tried the larger and flasher looking fascilities, but they are way under staffed. The price is better at the smaller ALFs because more services are included.

Lightedpumken: My Dad has dementia and is in a memory care facility. The third one we tried in two years. My Mom is at home alone with early Alzheimer's now too. My parents had a trust and living will and all that stuff arranged with me all set up to take over when needed...and still there was much to learn. It seems to me that many people on this site are caring for parents at home all alone and with little money and have NO IDEA that Medicaid will pay for this assistance, either at home with part time caregivers coming to the house or in a nursing home or dementia type facility. Once your mother is down to less than $2000 in cash coming in each month or accumulated, and owns no other assets besides her home and one car, she would quickly qualify for Medicaid assistance. Medicaid now pays the full fee for my Dad in his facility, however, he had savings/investments and we had to use up $75,000 before he qualified. Now there are also VA benefits for people who have been active duty in any war, AND their spouses, so if her husband met that criteria, she may be eligible for some aid and attendance coverage from the VA too. Now, as to whether she needs to be in a nursing home or assisted living or memory care unit, mainly depends on first, is she ambulatory? If she can walk around....even with a walker or cane....she would be eligible for memory care, with a diagnosis of dementia or Alzheimer's or brain damage of many other kinds too. If she wanders and paces or is aggressive and might hurt herself or someone else, she would need to be in a locked or secured unit or facility. There are also small homes with less numbers of residents that are set up for memory care AND would accept VA or Medicaid as well as private pay. Laurabutler has a great idea there to look for as well. If she is not ambulatory at all, she may need the nursing home placement, though some places will take residents in wheelchairs also. In most memory care residences, the person gets up, gets dressed, eats in a dining room setting for all meals, has an out doors area where they can walk around or be wheeled to....and there are many activities going on, including trips in vans as a group, outside of the facility. So, much different than most nursing homes would be. If eligible for Assisted Living, the day to day is very similar too. I would recommend, especially if your Mom does have assets still, to make an appointment with an eldercare or trust attorney. Initial app'ts are often free of charge. Have a consultation where an expert can look at all the assets and her needs and help with referrals and suggestions about how to move forward. My parents law office even has an eldercare case manager assigned to me and my parents, and she is like a social worker....able to recommend certain facilities or assist with applications for VA or Medicaid, or refer you to the right people in those offices and she really KNEW all the good and bad facilities in Tucson, when looking for my Dad. She also recommended agencies to come into the home, when we were still trying to keep him at home. Finally, as far as feeling bad that you can no longer care for your Mom by yourself.....you just need to view it as you are 'shifting gears'. If she is in a facility, you are still caring for her, but more as a 'coordinator' of her care, to assure that she's getting everything she needs....and hopefully, this frees you up to have more quality time to just go and visit her like you are her daughter and she is your Mom....rather than being exhausted and too busy from all the physical care. Yes, someone suggested getting to know the key people in the facility so you have a couple people who you can always go to to get answers. Nursing homes generally all have social workers. Plus you want to get to know at least one RN who is in charge...whether in charge of the shift you will visit mostly or whether it's the Director of Nurses/Staff, whom you can phone and talk to. The aides and techs who provide the care will not be able to answer many questions or make anything happen...they are the minimum wage workers who just do baths, feed residents, change them and move them from place to place. My Dad has been in places where most of these workers can hardly speak English well enough to understand, which is irritating to me and Mom. And for both you and DAVE above....you have every right to have it explained exactly what the staffing ratios are, and what level of staff are available on all shifts and to discuss issues if you feel your Mom is not getting what she needs. For example, in Arizona, memory care units have 1 aid for every 7 residents. They may or may not have an LPN or an RN on duty supervising them, but they must always have one professional like that 'on call' by phone 24 hours a day and 7 days a week. People who give meds are NOT nurses (neither LPN or RN) but do go through special training to be able to give meds. At my Dad's current facility, they do always have an LPN on duty for all 5 cottages, so she goes from one to the other and generally supervises all the aides and the medications being given. She also is the one to phone the doctor if there is an emergency or decides how to handle it if someone falls or is ill etc. In the daytime, there is another LPN who is the Program Director and an RN who is the General Manager/Director of the entire operation. There are no social workers. So you have to ask, and have someone at the 'top' tell you how they operate. Also, each state health dept will be able to tell you what the legal requirements are for being licensed in the state. Sometimes that info can be found on the Internet. If you think something is not right or being done in the right way, or your Mom is unsafe, there is a method to report complaints to the State so they investigate if the facility is not fixing the situations you are concerned about. I hope this gives you more info to go on and investigate.

Lightedpumken: My Dad has dementia and is in a memory care facility. The third one we tried in two years. My Mom is at home alone with early Alzheimer's now too. My parents had a trust and living will and all that stuff arranged with me all set up to take over when needed...and still there was much to learn. It seems to me that many people on this site are caring for parents at home all alone and with little money and have NO IDEA that Medicaid will pay for this assistance, either at home with part time caregivers coming to the house or in a nursing home or dementia type facility. Once your mother is down to less than $2000 in cash coming in each month or accumulated, and owns no other assets besides her home and one car, she would quickly qualify for Medicaid assistance. Medicaid now pays the full fee for my Dad in his facility, however, he had savings/investments and we had to use up $75,000 before he qualified. Now there are also VA benefits for people who have been active duty in any war, AND their spouses, so if her husband met that criteria, she may be eligible for some aid and attendance coverage from the VA too. Now, as to whether she needs to be in a nursing home or assisted living or memory care unit, mainly depends on first, is she ambulatory? If she can walk around....even with a walker or cane....she would be eligible for memory care, with a diagnosis of dementia or Alzheimer's or brain damage of many other kinds too. If she wanders and paces or is aggressive and might hurt herself or someone else, she would need to be in a locked or secured unit or facility. There are also small homes with less numbers of residents that are set up for memory care AND would accept VA or Medicaid as well as private pay. Laurabutler has a great idea there to look for as well. If she is not ambulatory at all, she may need the nursing home placement, though some places will take residents in wheelchairs also. In most memory care residences, the person gets up, gets dressed, eats in a dining room setting for all meals, has an out doors area where they can walk around or be wheeled to....and there are many activities going on, including trips in vans as a group, outside of the facility. So, much different than most nursing homes would be. If eligible for Assisted Living, the day to day is very similar too. I would recommend, especially if your Mom does have assets still, to make an appointment with an eldercare or trust attorney. Initial app'ts are often free of charge. Have a consultation where an expert can look at all the assets and her needs and help with referrals and suggestions about how to move forward. My parents law office even has an eldercare case manager assigned to me and my parents, and she is like a social worker....able to recommend certain facilities or assist with applications for VA or Medicaid, or refer you to the right people in those offices and she really KNEW all the good and bad facilities in Tucson, when looking for my Dad. She also recommended agencies to come into the home, when we were still trying to keep him at home. Finally, as far as feeling bad that you can no longer care for your Mom by yourself.....you just need to view it as you are 'shifting gears'. If she is in a facility, you are still caring for her, but more as a 'coordinator' of her care, to assure that she's getting everything she needs....and hopefully, this frees you up to have more quality time to just go and visit her like you are her daughter and she is your Mom....rather than being exhausted and too busy from all the physical care. Yes, someone suggested getting to know the key people in the facility so you have a couple people who you can always go to to get answers. Nursing homes generally all have social workers. Plus you want to get to know at least one RN who is in charge...whether in charge of the shift you will visit mostly or whether it's the Director of Nurses/Staff, whom you can phone and talk to. The aides and techs who provide the care will not be able to answer many questions or make anything happen...they are the minimum wage workers who just do baths, feed residents, change them and move them from place to place. My Dad has been in places where most of these workers can hardly speak English well enough to understand, which is irritating to me and Mom. And for both you and DAVE above....you have every right to have it explained exactly what the staffing ratios are, and what level of staff are available on all shifts and to discuss issues if you feel your Mom is not getting what she needs. For example, in Arizona, memory care units have 1 aid for every 7 residents. They may or may not have an LPN or an RN on duty supervising them, but they must always have one professional like that 'on call' by phone 24 hours a day and 7 days a week. People who give meds are NOT nurses (neither LPN or RN) but do go through special training to be able to give meds. At my Dad's current facility, they do always have an LPN on duty for all 5 cottages, so she goes from one to the other and generally supervises all the aides and the medications being given. She also is the one to phone the doctor if there is an emergency or decides how to handle it if someone falls or is ill etc. In the daytime, there is another LPN who is the Program Director and an RN who is the General Manager/Director of the entire operation. There are no social workers. So you have to ask, and have someone at the 'top' tell you how they operate. Also, each state health dept will be able to tell you what the legal requirements are for being licensed in the state. Sometimes that info can be found on the Internet. If you think something is not right or being done in the right way, or your Mom is unsafe, there is a method to report complaints to the State so they investigate if the facility is not fixing the situations you are concerned about. I hope this gives you more info to go on and investigate.

In regard to ferris1 reply, I believe when she remarked all nursing homes are bad, she meant they are all under staffed and unable to take care of family like we would. I have visited all around my towm at least 6 nursing homes and all have 11-12 Patients per cna which state mandates. I also am nurse and no way they cam feed,bathe. Change,give mouth care, force fluids, and check for incont on that many pts. As far as making arrangements previously when younger, for long term care, not everyone has had that opportunity. My mom worked into her 70s and raised 3 children on her own by working in dime stores after divorcing my father. He was not around to help.women were paid nothing then and still underpaid. I worked as nurse 31 years and helped mom financially thru years.

Where does someone with memory loss really belong? There is no general answer to that question. Each case is different.

Living alone is not a good option for people with dementia. Some can handle this in the very early stage and with lots of arranged support (meals-on-wheels, a nurse to manage meds, someone to do laundry, etc.).

Many do well living with a loved one. Again, this generally works best in early stages, and must be supported with additional in-home care to be maintained throughout the life span. In many cases it is not the best option for later stages even with additional assistance.

Assisted living can be a good option for people with dementia, depending on their abilities to perform activities of daily living, whether they tend to wander, and if they have problematic behaviors (which would be disturbing to other residents). Most assisted living facilities do include a high percentage of residents with dementia.

If the person with dementia needs help with a lot of activities of daily living and/or has physical infirmities that need attention a skilled nursing home environment may be the best option. Again, most nursing homes have a high percentage of residents with dementia, and staff should be able to handle that.

"Memory care" is the best option for persons with dementia who wander. They need a secure environment for their own protection. Dementia patients with behaviors that disturb other residents may also need a memory care unit. The ratio of staff to patients is higher in these units. I used to think, as a poster suggested above, that staff in memory units have specialized training. I no longer believe this is true. My daughter says that when her ALF brings in a trainer for dementia issues, all staff takes the training -- both the regular ALF and the memory care unit staff. All staff deal with persons with dementia, after all. An aide from my mother's wing in the NH was chatting with us and explained we hadn't seen her for several weeks because she had transferred to the memory floor. I asked if she got specialized training for that. No, she did not. Hmmm.

Given this range of options, where do you think your mom belongs?

You don't say how extensive her memory loss is. Memory loss is difficult for the person and for their families. Contact your local Area Agency on Aging or Bureau of Senior Services for information on care facilities and in home programs such as the waiver program/home and community based programs in your area. Some programs will pay for your mother to be in an assisted living facility. They are usually more home like that nursing facilities. It is difficult to place a loved one in a facility especially if you know their care is lacking. There may be options available. Sometimes we have to make difficult decisions, if your mom wasn't safe at home and could be injured it would be neglectful not to find the care she needs. We (my parents and I) took care of my grandmother at home for as long as possible then she moved in with my parents, we took care of her there for as long as we could. She would wander and would burn pots on the stove, we were afraid she would wander off in the night and freeze to death or burn herself in the middle of the night. We decided to place her in a nursing facility. She had good care, but not all facilities offer good care. The above agencies can also give you a list of facilities and you have the right to review their survey results so you know the types of problems they have had in the past. Being a caregiver is not an easy job, is can be very demanding both mentally, financially and physically. Caregivers need to care for themselves first or they won't be able to care for anyone else. There are programs that can assist caregivers. Being poor is not a sin, but being poor can mean that one can't afford the care they need. In home care is expensive as is nursing homes. I hope the above agencies will be able to assist and guide you. You can continue to be supportive and visit your mom when you can. Make sure she knows you love her and are doing the best you can. You are not alone, the number of caregivers is growing everyday. Each of us can only do what we can do, you are doing your best that is all anyone can ask.

My godmother who is 87, who has been like my mom my whole life, just got diagnosed with early dementia, which I knew already, as I was a nurse for 10 years. I hurt my back while I was a nurse, so I have home nurses come in to do her bathing and dressing. We are using a baby monitor now, as she is starting to get up 1-3 times a night and she has already fallen. I might need to get nurses in to help through the night also as time goes on. I hate to put her into a nursing home, as I know how they are and what kind of care is given! I keep praying it does not come to that, put for right now I am taking one day at a time.

It also depends if you are working, and if you have someone who can help you take care of her. If she can afford it, you can have home nurses come in to help, and or ask your doctor if hospice can be brought in. If you must rely on a nursing home, I would go and check out the facility myself and ask around to see what their reputation is. God Bless and Good Luck!

There's such a huge variation between NH, AL, 6-resident houses, etc, its really difficult for anyone here to say where your mom belongs. One thing for certain, no place will be perfect.
Government does already pay senior care thru Medicaid. If you want cradle-to-grave care for every one, get ready for federal income taxes of 75%. Do the math. Every penny Congress has to spend, is already spent before the new Congressmen get sworn in. There is NO new money to put every senior in the nicest facility we might want them in. (Read "Dead Men Ruling" for more about how there is literally no money to spend). Many people can and do save for 40 years, faithfully, and avoid excess spending on crap they do not need, and they are in a good position along with purchasing LTC policy, to take care of their needs. My neighbor has 94 y.o. mom with 24/7 caregivers, 4 8-hr shifts (1 does weekends only, and family comes in weekends too). Their mom has dementia, bad. It is so much cheaper for them to do this than pay $9-10 thousand a month in facility.

She should be shifted to an assisted living home. We have recently shifted my grandfather, who was suffering from Dementia, to Luvida Memory Care.

I feel very sorry for the problems and pain you are going through. I certainly understand you because my husband had Alzheimer's at the age of 50/51. I have taken care of him as long as possible. But as I had no assistance of my children (all going working both of them, and having their kids to take care of I cld understand that) it was a 24/7 job. Of course I don't know if these facilities exist where you live (I am from Belgium / Europe) and I have started with daycare. This means that a small bus is picking them up in the morning and bringing them back in the late afternoon. But as the disease progressed, and I knew that the time would come that I would not be able to do this any longer. Day care was a solution, but I still had not rest during night nor during weekends, had a part time job, and I became so exhausted that the only possibility was to consider placing him in a specialized care center. That's why about 2 or 3 years beforehand I have contacted at least about 12/15 care centers, and during my visit of the facilities, I looked very carefully to the people living there to see whether they were well taken care of or not. When I saw elderly people with dirty clothing, or with clothing partly open or missing, for me this was definitely NO. Also the odour is most important. When there is a strong smell of urine or faeces, just forget about it. Finally I had 3 left in my booklet, and I have put my husband immediately on the waiting list. This waiting list also says a lot : when you only have to wait for a couple of months, this is a bad sign. This means lots of people come in, but after a few months are moved out by their family because care is not as it should be. In all 3 specialized care centers for people with dementia / Alzheimer, there were waiting lists of upto 3 years. Finally, a place became vacant after 1 year and 9 months. And I was very happy that I had done it this way, because it was an excellent care center. Of course, it is never as at home, but when I called in a nurse to ask something I never had to wait for longer than approx. 5 mins. I hope your mother will enjoy her stay so that you have the necessary time to rest and take care of yourself. It is normal that you want the best care for her, but please never forget about yourself as well. With best wishes and big hug.

yay for the people who saved and provided for their old age but dont be too smug about it . workforce restructuring began in the 80 ' s and job security was to be no more . these days even doctors and teachers are treated as independent contractors with no benefits at all . all ive managed to save for old age is a jar of nickels and a little bit of roach dope .

You have some very good information here. It does depend on what level your mom is at. Also, keep in mind that the dementia is progressive and while she may be fine one place for now, that could change quickly, if the dementia increases.

I saw many people with dementia in the regular Assisted Living my loved one initially entered. I'm not sure what phase they were in, but they were able to function there with lots of support. They did not wander and did not resist care. If that starts, then you will need a more secure facility, like Secure Memory Care.

In a Memory Care facility, the resident is provided more protection from things that could hurt them. They don't have their own shampoo, lotions, mouthwash, etc., since they could ingest these things. They don't have access to the temp controls. They are not free to walk out. They are watched and the staff to resident ratio is lower than a regular assisted living.

My loved one happened to need the Secure Memory Care much faster than we expected, but her move went pretty smoothly and she doesn't even seem to recall the first place she lived at.

It's important to get a list of the things she needs assistance with so you can match it with what the facility provides. I think the help of a professional to do this is very important. They think of things you might not. Good luck and remember that just because a place has a good reputation, doesn't mean they will be good fit for your loved one. I learned that first hand.