I had been taking care of both of my parents for over 2 years. Since my father passed away last year, I have been taking care of my mom. She lives 30 to 1 1/2 hour away from me and for a long time, I have been going to her form 3 to 5 times a week. My mother has dementia and she has many health issues. She used to smoke 1 1/2 packs to 2 packs a day and now with the help of 3 to four aides, she smoke 1 to 3 cigarettes a day. She was in hospital many times in one year! Since she fractured her hip a month after my dad passed away, she cannot walk around and needed to be reminded to use her walker. To make long story short, I am taking in a way taking care of her 24/7. including taking care of her bills. My husband has been unemployed for 2 years and I have some health issues and I am in a sense working full time taking care of mom. I am not getting paid to do this and my family and I are financially strapped! I don't know what to do about this! My sister lives out of country and the original agreement was that we get equal share when mom pass away. I don't think its fair. Also I need to make some money in order to take care of mom! I told my sister that if things heading this way, my family and I can lose our home. She did not say anything nor did say anything to support me. I am so lost and scared and don't know what to do anymore. Any suggestions?
Who has the POA's? Ultimately it is their decision. You should hire an impartial 3rd party to do an assessment of you mom's needs. If she doesn't want to be there she should tell the case manager. You as a nurse, and beneficiary, should not be making the call. In my family a sister is a Licensed Professional Counselor. Two years ago, she wanted to get a friend of hers to do a geriatric nurse to complete an assessment for my mom. A friend or family member is not appropriate and automatically brought suspicion onto my sister. Regardless of what is best for your mom it will cost her estate money. Brother's offer is very generous to the other siblings. If your mom's mental state is up and down, sometimes rational and sometimes not, get the assessment from a certified geriatric care manager. And if she is early stage dementia she probably does not need a trained geriatric professional to care for her. If training is the question, the Alzheimer's Association offers a class called Savvy Caregiver that may be all that is necessary at this point. AA has many classes available that are of minimal cost. Even when nursing care is needed many caregivers are trained by nurses for a variety of different tasks. Get the impartial 3rd party to do an assessment.
If there is a care agreement in place and permissible in the state in which your brother and mother reside, and before brother is paid, Medicaid will not penalize your mother or the family for payment to your brother for mom's care. You can contact elder care attorneys online at no cost, in the state of concern through AVVO. You can pose your question, they will respond and will often offer a free half hour consultation. I imagine that they would also recommend a geriatric assessment.
And, yes, your brother should have let everyone know, if for no other reason than to keep the peace, but if he is POA he is not required to do that. Get the geriatric assessment done for your family's sake. Contact an elder law attorney. If mom is sometimes rational, you also need to realize that, and take everything she says with a grain of salt. Let the professionals help your family make a decision.
Countrymouse: Mom had been paying about $2400 a month for independent living apartment at that facility. Moving her to Memory Care would have been closer to $6000, so more than double, quite a jump. I think Mel DID think they were robbing Mom. But he still should have discussed it with all before jumping ship so we could have investigated all options and made a unified decision. After calling around and comparing similar facilities there, the going rate runs between $5500 and $6000, so it wasn't out of range. That's a LOT of money that will run through savings in a hurry--- but it is what Mom needs now. And it is HER money, for her care. As a nurse I know what kind of overhead those facilities have, too, which is much higher than what one has at your own home. So Mel's price, of $4500, seems high to us----but the big question remains," How will that be seen by Medicaid?"
Although Mel and his wife are doing the best they can with Mom, they are not trained geriatric professionals and have some funny ideas about healthcare. Now Mom has voiced to two of us that she doesn't want to live there, she feels uncomfortable and like she is in the way, and she is such a private person she needs some space to herself. Mentally she is up and down, sometime rational, sometimes not.
I thought the amounts from state to state varied, but not the initial concept.
I only know Illinois, not everywhere else, but when I go on the internet looking for things Texas website looks better than ours as well as Florida, California, Minnesota and the UK.
Butter, if you wait until Medicaid eligibility, then money has been paid already and moms money spent down. Anything paid before an agreement is in place would be subject to penalty. For example, say brother is paid, just to use round numbers, $100.00 day, over the course of five months that would be $15,000.00. Something happens to mom and she has paid $15,000.00 to brother leaving her completely broke. Medicaid is applied for and they find brother was given $15,000.00. Through the application process they ask why brother was given $15,000.00 to which the reply would be he was caring for mom. They would then ask for proof that it was for care and not a gift.
The nursing home charges $5,000.00 a month for all private pay residents. Then Medicaid would not pay for the first three months, this $15,000.00 is the penalty. Those penalty months would then need to be paid by other means, most often I would guess that would be children.
Confused yet? But a good elder care attorney is invaluable, in these situations. And if you want to be more politically correct, it is commonly called Medicaid Planning which allows for some assets to be protected reserving them for beneficiaries. But the rules are very strict. Parents home can be transferred to a caregiver child without penalty if that child is caregiver for a period of two years before facility care is needed. The law may be different in different states.
That is why their needs to be some kind of family caregiver legislation passed (federally or locally) to pay us and protect us (although I have to admit, that I am not blood relative, but a fellow disability person and when it is not right for one (disabled), it is not right for all(disabled people).
This is my point ...It isn't like I started yesterday.
I started in 2006, little by little, until caregiving was a full time job.
It was not until I reported them for financial abuse and neglect (2011),
(I provided food, medicine and medicine giving,
toilet paper, paper towels, laundry, vacuuming,
companionship, Doctors visits that diagnosed her dementia leading to AD.(2009)
took her blood pressure (while she was switching from 30mgs to 60 mgs blood
pressure medicine) made sure she made it to her part time job, arranged her social
calendar and even cleaned up her poop, a side effect from Exelon).
that their (the POAs of financial and medical) comeback report to the Senior Abuse investigator from Catholic Charities, was for abuse, what kind(?) but said, our 86 (84)year old was afraid of me, a vague accusation.
Catholic Charities bought "their story" hook, line and sinker (but they were never thoroughly investigated). I was asked to leave my apartment that I shared, so our 86 (84) year old could come back to her own home (a two flat) but they never returned her, because they could not they (the POAs) inadvertently removed her/their free caregiver. In addition I (solely) had to incur the debt of an 800.00 apartment.
The 86 (84) year old was flopped around for several months, as they (POAs) attempted to care for the 86 year old (and went through $60,000.00 in 7 months) but could not take care of her the way I had, until she was placed in a very large AL facility (at 6500.00 a month).
They (POA's) sold her building in a down-turned economy, to pay for attorney fees, GAL fees and a guardian was appointed. The POAs did not realize that by selling the building, that the money would be placed in a conservator-ship in a bank, or that they would lose their POA status (no house to manage, own or the person) by default.
HOW DID WE GET HER BACK?
Glad you asked...
OUR MIRACLE HAPPENED.
The opposing lawyer FORGOT her stance and said we could watch her for a weekend 2012. (what person who accused you the year before of abuse, would put the same people together?, it would never happen...if the abuse were true) and we have had her ever since. We have been reunited for a year and a half. NO OUTSIDE ABUSE REPORTS . NO Problems...
until we wanted to get paid...now they (ex POAs) are bringing up the abuse...again, the fact that she is now wearing different clothes (new ones) and gym shoes- per the foot doctor.
We are only asking for the 7 hours we cannot have an outside job (not two sets) one set of 7hrs. The 86 year old needs 24/7/365 care and we relatively have no time off.
One sibling takes her 30hrs in a month.
Our court date is in a couple of weeks, we want a hearing and a full investigation,
there isn't any reason that a senior's life cannot remain golden, even if they have AD.
It is a disability like any other disability, they have rights, too!
And also do the caregivers who insure those rights!
Before he is paid anything there needs to be a care agreement in place that is Medicaid compliant. If there is not, then should your mom ever need Medicaid, there would be a penalty period equal to any amounts given as gifts to anybody, and paid to your brother for her care without an agreement in place.
Another suggestion, before your family blows up as mine did, hire a geriatric care manager to assess your mothers needs for care. You need an impartial third party to assist. Let them make the call.
Having said that, in the state of Oregon the going rate, as of October 1,2013 is $175/day if you were to hire someone to come in and take care of your mother at home. Most nursing homes around here charge from $4000-$5000 per month for a memory care facility. What you are choosing over is whether you would rather have your mother receive 24 hour care with your brother or inside of a nursing home.
If you don't feel that he can give her adequate care at his home, meaning 24/7 care, then you need to discuss it with your mother to see what she would prefer.
My sister and I are both DPOA for my mother. My attorney, who also attended the meeting with the Medicaid caseworker, suggested that I draw up a caregiver contract with my mom and have my sister sign it. Then there wouldn't be a conflict. She was going to look into it further.
The Medicaid caseworker said that as long as I documented everything I did daily for my mom that I could be paid.
Then we can have her qualified prior to us ever needing to have her go into a memory care facility. It gave me a bit of comfort knowing that one more hurdle was approached (not overcome yet).
Six children, all over the U.S., one brother who chose to live his life within ten miles of Mom's home. Wonderful. Geography dictates that he is the support person and he has willingly taken on that responsibility. The rest of us have kept in close contact and visited Mom as regularly as our lives and finances allow.
We all agreed when Mom needed to move out of her home and into an independent care facility, which would make it easier and safer for her. We all agreed to take Mel's advice as to which place, with the understanding that Mom would be able to live out her life there, progressing through the system, from independent to assisted to nursing home care. All agreed.
Mom had been losing ground steadily, mentally and somewhat physically recently, so we all understood it was time for her to move into the assisted living part of the facility, but when Mel heard the price he made some terrible accusations to the facility and pulled Mom out and took her home without even discussing it with the other five of us. We were shocked and confused. Turns out all Mel could talk about was Mom's MONEY that the facility 'wanted to get their hands on', etc, etc. It wasn't about what was best for Mom, it was all about the money.
So she's been living at Mel's house now for two weeks, he has told us he wants $150 a DAY for Mom's care. A lawyer has told us (and we've all agreed) that a reasonable rate can be paid to a family member,… but no one has heard of that price tag before.
Now we all are wondering about Mel, asking for more disclosure than he has ever willingly offered and it turns out Mom has a half a million dollars saved up…..and apparently Mel is afraid he won't get enough of it in the end so he'll take it upfront?? There are laws about that.
Her money. For her care.
So, we've lost confidence in Mel, now, and ALL of the rest of us want to see her back in professional care, in a Memory unit, where her special needs can be addressed. We'll see what will happen.
We have so appreciated Mel's devotion to Mom over the years, but let's face it: it is geography. I and several others of us have offered multiple times to move Mom to OUR area of the country, so the burden would be ours, but Mel refuses. So…? What can we do? We're happy to let him take a fair 'wage' for her care,…. but really, she needs a facility.
There must be a way to get it done for you as well. Good luck tomorrow.
I was told that my mother couldn't engage in a caregiver contract with me since she was already diagnosed with dementia. I will be meeting with someone this week to see what Medicaid in OR says about it all.
Good luck. Let us know what you find out.
NEXT question ?
your bills do not get paid and often the 24/7 care came on gradually,
so in the beginning, it was only a moment here or there.
It was our money that ran out long ago, not the 86 year old's,
as the sibs waited until we filed a financial abuse and neglect charge with Senior Services for not paying for food or medicine for their parent while taking the SS check
paying the bills, but not reimbursing for food and medicine for four years.
Medicines like Exelon, Avair and Namenda were expensive when in the donut hole,
and cost us plenty, while they pocketed the extra SS check money.
I only found out recently, that before reporting them to senior abuse, we should have reported them to the police.
The 86 year old was pulled from that facility, when she really couldn't afford it.
"Cash and Counseling" was an option but (sibs) sold the house,
and the 86 year old doesn't qualify for it anymore.
When the nursing home ( costs $6500)
and there is a finite amount of money and
the elder (our 86 year old) who wants to stay in the home,
is (in our case) grateful to be in the home, why are our motives being checked?
The 86 year old is not my relation but my friends,
WHY DO I DO IT?
The 86 year old's life remains golden and undisturbed
despite some siblings who want to spend the $6,500 a month
(because that is how they would solve the problem)
we do not see it as a problem and the one
who has always taken care of the parents (my friend)
and now the one, is fulfilling the parents' wishes,
even with AD.
But you cannot go into a food store and say
because I love my parent, please give me some groceries, etc.
Some where along the line 24/7/365 care constitutes as an occupation
we certainly are not charging for the 24 hr. care that she needs,
we are only purposing to cover the 7 hrs. a day, that we cannot work,
and that is a single set of 7 hrs. because she needs 24/7 care.
The day care will only allow her to be there 6 hours a day, so we only send her two days a week, but I still have to work the 3 hours before daycare and 4 hours after daycare and would have to work part time on those days, to me that is the madness.
I compare elder care to motherhood, why should I pay most of my salary to a baby sitter
when I am perfectly able to take care of my own child, a decision most of us make during those early years, when we stay home with our children,
God Bless all of you that were able to make money
that wasn't equal to what you had to pay the baby sitter,
we all can make our own decisions,
we are not cookie cutter people
there is room for diversity,
we all have our own reasons,
as to why we make our decisions
and it doesn't have to mean,
that somebody is wrong and other people are right,
we are all INDIVIDUALS, and we all have to do what we feel is right,
which is why I am sure you stayed home with your Mom.
The sibs give the 86 year old 30 hours in a month.
We feel the stimulation (of visiting friends), support and AD diet given to our 86 year old is contributing to the betterment of life and she is doing well by all accounts.
You also said that money is for her care. Many of us are providing the type of care our folks would prefer, especially those with dementia. Believe me, you want to keep those with dementia at home if at all possible. That is definitely what is best for their health and welfare. If these family caregivers are not paid and there is sufficient assets to do this, who receives the benefit of free care? Other beneficiaries that often times do nothing to assist. There is story after story like that here at AC. Naturally these unpaid family caregivers are angry, they are in a position to potentially lose everything they have worked for and many times will become eligible for Medicaid, if they aren't already.
Many here on this site are 24/7/365 caregivers that are able to keep parents at home. If I was doing errands, taking her to church, sure I would do that willingly. But 24/7 is much much different.