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My Mom is 79 and has mild to moderate dementia. My brother lives w/ her and works outside the home.. but very on and off he is a painter so when he is between jobs he is there during the day also.
My sister seems to think that Mom if she fell would not be allowed to come home from the hospital unless there was 24hr care or she went to assisted living. I disagree... Mom is capable of staying by herself a couple of hours at a time.
She doesn't wander, doesn't try to cook, we give her showers although she will tell you she can take them on her own- She can't- but she is compliant and does what we tell her to do when we tell her to. She takes care of her dogs by herself (except for picking up the dog doo) she can carry on a conversation with her two girlfriends on the street and walk to their houses to visit.
She is kind, sweet gentle, she does laugh sometimes when we are trying to discuss her limitations (which ticks off my sister and brother)
What I am trying to get to is how do you know when 24 care is required. She is usually alone for only 2-3 hours at a time.
I know my sister is stressed as she works full time, is trying to lose weight (gym everyday after work) so she can have a procedure done, and has two college age boys and her husband at home. I try to tell her it isn't necessary for her to come over every evening ( she lives only 5 min. away) I get that she is stressed but think that she is thinks in catastrophic terms and borrowing trouble.
I do not work as I am on SS disability ( I live 30 min. away) I do have a retired husband - so I have a family but it is easier for me to be there during the day and some Saturdays and Sundays from Noon - 6pm.
I guess what I am saying is I am willing to take on a larger load and I don't think we are there (24hr or assisted living) yet.
I do not think Mom is incompetent - does she forget yes, but she can reason in the moment.
How is incompetency decided?
Mom very much wants to stay in her home and not do assisted living or nursing home. She has some assets to pay for in home care for a few hours a day.
By the way... does medicad pay for in home care?
Sorry to be so long. Just very frustrated and trying to get feedback on whether I am being unrealistic - or living in la la land as my sister says.
I am going to make a appointed with and elder law attorney to look at the family trust and give us advice on how to keep her house (even after she dies) as my brother does live there. But from what I have read the exemption would only count for his percentage of the house. I have so many questions about medicad planning that I think we should all sit down with an attorney
Maybe then my sister would feel assured that somehow she and her husband aren't going to somehow end up financially responsible for Mom. I think that is an underlying fear.
I know this is probably too many topics in one post. But I feel better getting it down on paper and would appreciate feedback and advice.

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Yes, too many jumbled sentences to the point I would recommend some counseling for you and your family. What IS the question. Yes, your mother has lucid moments, but don't expect those lucid moments to be there in an emergency if one occurs when she is by herself. Get some extra help if none of you can be there, and stop fighting about stupid issues. Either keep her safe when she is at home, or don't, and suffer the consequences of having something happen to her and you all being held accountable in a court of law.
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Great advice here. Great that you are looking into the near future, too. Too many don't look ahead! You might want to consider getting the house into your brother's name ASAP (or one of the other siblings). See the atty's for certain ASAP, & see if Mom wont give durable POA to one of her kids as the primary & then state that if that one becomes unable or unwilling, then it goes on to another of her kids... on down to however many siblings you have. Make sure she signs papers at all Dr offices that info about her can be given to you (& your siblings). Those privacy laws are good to some extent, but ridiculous in another way.

Your Mom's condition sounded a lot like my Mom's (she passed last Monday). She bathroom'ed herself, bathed herself (I was nearby), she could fix a sandwich, open a can of soup, zap leftovers, was not the least bit aggressive or combative. She did have some memory problems, didn't remember people's names, what we had for supper the night before & things like that. She left water running in the kitchen sink one time (who hasn't?) but the stove was not an issue either. Does your Mom know how to call 911 & a neighbor, while your bro is out? Does she know how to call his cell phone (if he has one), or to call you, in an emergency? You might consider getting her one of those "Help I've fallen & I cant get up" alarms that you see on TV ads. That should relieve everyone during the times that Mom is alone for a few hours.

Put away any obstacles - put away any loose rugs, - those are the worst on the elderly. Make sure pathway to the bathroom is clear, that anything she may want or need is within her reach. Even if she is able to bathe herself, make sure you have rubber stripping in the tub to prevent slipping. Put up grab bars & hand rails, etc as needed. Make sure lighting is adequate throughout the house, especially during the night. Leave night lights on to see to get to the bathroom. Just totally check the house for safety hazards like you would with a toddler just beginning to walk.

Hope this helps in some way.
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JennyMae,
Your idea about contacting a lawyer sounds very wise. I would have both your brother and sister there, even spouses, and have each person make their own personal notes. Then each can think about all the info you get and make personal decisions about what they can do and what boundaries each must set.

If you and your siblings are going to share the responsibility of caring for your mom it will take a lot of communication. For me that has been the hardest part of helping to take care of my mom. My stepfather is the primary caregiver in our case and we don't communicate well. This leads to a lot of hurt feelings and anger.

Each of you siblings should make decisions based on what is best for each of you. It sounds like you are trying to make decisions based on what is best for your sister and to a lesser extent for your brother. You will have your hands full just worrying about your own sanity. If your sister is a worrier and is stressed and dreads being burdened with financial responsibility that is her decision and responsibility. You can't control her outlook on life. It's not your fault that she has that outlook. You are doing the best you can in this complex situation. I had a counselor tell me those three things in regard to a situation regarding my sister. I often remind myself when confronted with impossible situations. (It's not my fault, I can't control it, and I'm doing the best that I can.) If you can communicate with your siblings you are very lucky. My sister hasn't even called in months. She does nothing in regard to the care of our mom. If you and your siblings have gotten beyond the relationship patterns established in your childhood you are really, really lucky (and smart). When your family is working out this care plan try not to go back to the ways you dealt with each other as children. Ex: it's not your responsibility to make sure your sister is always comfortable even when she sounds like she is always stressed out. Maybe she likes to push herself and wouldn't feel comfortable without the stress?

If your family can make some decisions y'all DON'T have to stick with those exact decisions forever. What will work for your mom this fall may not work after the New Year. A nurse told me that this disease is decline, then plateau, then decline, plateau, etc. Some of the declines are sharp. Some of the plateaus are short, some longer. With my mom there are no patterns to ANYTHING. It is a constant change.

Here is an idea: Could your brother be paid to become the live-in caretaker? Either by you and your sister or by Medicaid or the Alzheimer's Association? If he was paid the same as what he makes painting then maybe he would be willing to be there all the time. You and your sister could come over whenever and as much as possible to let him get away. He would need off time, help with shopping, help with chores, moral support and everything else you can do for him. My mom's doctor got my mom in a Home Health Care Program and eventually it became Hospice Care. The company's name is Amedisys. These companies help with a lot of things. They even offer respite which is when you take your mom to a nursing home just for a couple of days so caregivers can get relief.

This website has been one of the most helpful resources I have found in this nearly unbearable situation. I have really learned a lot from the questions and answers of other people and just knowing that we're not alone is great.

My sincere best wishes to you, your husband, your brother and and brother-in-law, your sister and most of all to your mom. Please give her my compliments on being such a great mother to have raised three such loving children.
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I agree that you must see a lawyer that specializes in this type of finacial situation. Certain finances are looked at by Medicaid back two to five years and will still have an effect on whether or not they will aid in any care. Medicare is a bit different. I do not know her age but if she has any military connections that is yet another option. With regards to assisted living.. they have very strict guidelines. As soon as they begin to wander, use the stove or microwave inappropriately, flush things in the toilet.. they are asked to leave. If no POA is in place that is an absolute must. Also to specify medical needs. Set up bank accounts with dual names. We are living thru this all now. We both work full time. Luckily my daughter can help during the day M-F with grandpa while we are at work. We use a combination of her, a good friends college age daughter and respite when we need to have “date night” or are out of town. some of the changes are subtle at first and for family are difficult to see. It is always best to have a plan in place for safety, finances, nutrition, hygiene. First floor bedroom and bath access. Checking and bills. Knowledge of life insurance, 401 or 403 accounts. as the disease progresses they will tend to not want to change their clothes, not want to shower, resist taking their medication. ( if left to themselves take too much or not at all). With regards to food they will tend to not eat at all. If they had their choice they will gravitate toward sweets only, but if you cook and set in front of them they will eat.
Just remember that as time goes on she loves you as you all do her. You all have a common goal. Please do not argue, as time goes on it is going to need you to all pull together. Doing it alone is exhausting. You all have her best interest at heart. You all have your hearts in the right place. Sometimes you have to take a step back and you can come to some middle ground that will work for everyone involved. Best wishes to you all.
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Wow, you are right on top of things and doing everything right, which is rare and wonderful. Just make every effort to keep everyone on the same page, compare your observations weekly. We found that mom could act very differently with each child, sweet with some, and arguing with others. Granted much of this is in the child's approach to the parent. If you seem anxious, mom will become anxious too.
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I went through this with my mum to a certain degree. I felt she needed live-in-care long before she got it (which happens to be me). A year ago she had a fall and was in the hospital, while she was in there she was assessed by an Occupational Therapist who tested her (asked her questions), I was there for the test and my mum did not know many of the answers, such as what year, month or day it was. She also has mobility issues. Fortunately, it was the OT that told my mum that she can not live alone any more. I would suggest you have testing done. I can leave my mum for a few hours at a time, but she can not live alone. I have to do the cooking, assist with dressing her, bathing etc., as well as be around in case of a fall. I really think it would benefit all of your family to have her tested by an OT, someone who has no personal connection with her. Good Luck!
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If you feel that your mom is competent enough to know what she wants, then I would ask her. That's a start. After that, it really is a matter of how willing anyone is to go to the mat to make that happen.
We recently lost my MIL after five years in a nursing home. Both my brother and his only sibling were designated as POA and also healthcare POA. Brother lives in the same town as she did, we live about 26 hours drive away. Brother is a true control freak with very obtuse outlook on any subject. My husband is very empathetic, kind and willing to take on anything we needed to for her wellbeing, including bringing her to our state and city to care for her, do her bills and taxes, etc. Brother has been a spender, we have been savers. On and on. Anyway, brother could not wait to get her into a nursing home and sell all of her belongings shortly after their 88 year old dad died seven years ago. He pushed is weight around and threatened her all the time to use the POA to force this and that. She would complain to my husband and then back pedal. It all about drove us nuts. Brother would tell us constantly she was losing it and reinforced that with her (she was always terrified of that because both her sisters died with dementia and she was positive she would too, but it never happened).
We tried many times to be her advocate but in the end she was really in lala land about wanting the two brothers 'to just get along'. I convinced my husband that a) unfortunately, if she wasn't willing to stand up to brother, in the end, she was making a choice and b) we could not allow this to ruin our lives everyday listening to it and thinking we could do anything. The nursing home he forced her in to I wouldn't want my dog in but she would alternately complain and then say it wasn't that bad. Her husband and both sisters died there and she felt compelled I think to do the same out of some guilt. She had funds for something more, but there isn't much in a small midwest town of 15,000.
It is never a good thing for more than one person to have POA. When temperaments and personalities are so different there will be conflict. Especially if one has no ulterior motive and another does. But ultimately parents name these folks and they need to be realistic about what the outcome could be. Sometimes you have to accept that the best cannot be done - meaning the best in the way you see it - unless there is some agreement or agreement to disagree but go along with the program, whatever that is. There was never in our case any actual abuse. It's just that the last years of her life could have been so much better than they were.
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Jenny-
Hospitals, rehab homes will perform certain tests to determine whether or not a patience can be sent home. In rehab facilities, that often involves physical agility/occupational therapy type tests, like can they reach for something, do they have balance, can they transfer themselves (standing to bed, bed to standing, toilet to standing and so on). But unless they are really bad, they are going to send her home unless the family decides to admit her to long term care and you pay for it. You're not there yet, but you are asking the right questions. It's so hard to plan these things because so much can happen in the meantime. There is nothing you can do about your stressed out sister. She'll need to figure that out herself. But definitely, if all can sit down with an elder care attorney, is a GREAT first step. Do it!!

xo
-SS
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Thanks. I didn't sleep all night thinking about this. How do hospitals decide if a patient can go home or needs 24 hour care?
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Seeing an attorney who specializes in elder law sooner rather than later is a good plan!

Almost everyone with dementia eventually comes to the point where they need 24/7 supervision. It doesn't sound like your mother is there, yet. What does your brother think? He presumably spends the most time with her and might have the best view of this question. Since it may eventually be a requirement it would be good to discuss options and how 24/7 needs could best be met, even if it is not necessary to put the chosen option into play yet.

Yes, Medicaid does pay for some in-home care. Not 24/7 (because then it may be more cost effective to pay for a nursing home) but things like housekeeping so many hours a week, a visiting nurse on a regular basis if one is needed, and potentially a health aide. For example, the Elderly Waiver program within Medicaid paid for my husband to attend Adult Day Health Program (day care) a few days a week. When he declined to the point he could not benefit from that, he was eligible for 32 hours a week of a personal care attendant in our home.

There are lots and lots of ways to piece together a 24/7 care package, if there is someone (like your brother) living with the person.

If Mom goes on Medicaid, it is true that the house will not be available to leave to all of her children. Giving it now or leaving it to the son who is keeping her out of a nursing home may be the best that can be done -- and better than the state taking the full value of the house to repay the care costs.

These are things to discuss with the lawyer, and among yourselves.

It sounds like you are at the beginning of this very difficult journey. And that is precisely the best time to be asking questions. Congratulations.
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