A New Worry: Finding and Monitoring Your Elderly Parent’s Caretaker
Finding good care for your children is hard enough, but a story in Tuesday’s Journal highlights what can be an even more difficult task: Finding quality home care for your elderly parents.
As the story says, “the trend toward home care has generally been hailed as a way to keep seniors happier and healthier, and at a lower cost, than they would be in an institutionalized setting. Non-medical home aides typically receive only $10 to $15 an hour, and often work part-time.”
The problem is that these (mostly) unregulated workers have little in the way of supervision, regulation or background checks. In more than 20 states, a background check isn’t even required, the article says. And in some cases, companies say they’ve screened workers — and haven’t.
The results can be frightening. Cases of elder abuse are rising fast and theft has become a common problem. One woman died after her aide, who was on drugs, gave her a lethal dose of medication, according to the article. While the story outlines some steps you can take to help prevent such problems, there are few laws to help.
When I was searching for a day care program for my son, I made liberal use of state licensing databases, sought-out parents whose children were already at the centers for feedback and popped in at different times of day before committing. Friends I know sought extensive nanny recommendations and paid huge sums to nanny-finding services to ensure a good, pre-screened match. But, it seems to be more difficult to do that for at-home elder care, because even the companies that provide such helpers are often unregulated and operate unchecked — at least those providing non-medical help. What’s more, demand is growing so fast that it’s difficult for any state or national database to track the thousands of new workers that enter the field each month.
I’m grateful that I don’t yet need to worry about getting care for my parents, but I can see a day when it’ll fall to me or one of my siblings to handle. And I’ll probably still have children at home when that time comes. The article recommends you check in regularly on at-home care providers — a necessary but significant time commitment.
Readers, are you responsible for an elderly relative? How do you monitor and screen care?
frankly, until you pay people well you will not get quality providers. plain and simple.
I’m surprised the article did not mention Sue Grafton’s recent “T is for Trespass” mystery. The main plot line involves an abusive home-care provider for Kinsey’s elderly neighbor. She blows the background check on the provider and he and Kinsey suffer as a consequence. A good read.
My dad has passed and my mom is 74 and very independent physically. I would want the best care for my mom. I would move her to my home and hire a nurse to come to my home to care for her if she needed special assistance. I have thought of this and hope that when it is her time..she goes peacefully in her sleep without pain/suffering…however, if it does come down to needing a home care provider that is how I would do it.
My family just went through this with my elderly grandmother (deceased this past Jan). My grandma lived in a condo in Chicago, and my parents live in a small town in western Wisconsin–they drove down twice a onth, but it wasn’t enough. After she crashed her car twice, my parents decided to look into her options. She wasn’t medically ill enough for a nursing home, and she functioned very well inside the familiar environment of her condo. Fortunately some family friends recommended an in-home aide who had worked for their family for years. When she started working for my grandma, it turned out that she was part of a whole network of aides made up of family and friends. Over the course of 4 years, my grandma had 4 of these fantastic, caring women as aides. We paid them $125/day, I think, and they were there for 24 hrs.
I have a lot of experience with elder care. The horror stories from the article appear to involve caregivers hired through agencies, where it is expected that the employees will be screened. Even if you use the best high priced agency, sometimes the caregiver fails to show up on time. In my area most of the workers are foreign born, frequently African. How exactly does one do a full background check? The best way to monitor the situation is to visit often (several times a week). If there is no one local who checks in, hire a geriatric care manager (and not just a supervisor from the same company that provides the aides) who is a nurse or social worker, has medical care proxy or other power to make decisions on the spot, can accompany the person to doctor’s appts and do all of the other “daughter” duties. The elder juggle presents huge challenges. At least people can’t tell you “it’s a choice” to have parents.
My father is in an assisting living facility. It is a private home with 6 residents. I think this is safest arrangement. Nurses and social workers for the 6 residents drop by regularly. Also, I pop in unexpectedly so that I can see for myself whether he is being well taken care of.
A normal rate for a private non agency aide would be $125 for an eight to twelve hour shift, not for 24 hours, which is below minimum wage. My never married aunt was cared for by such a group of aides for many years. Eventually she moved into the home of one of them rather than into a nursing home. She quite properly left them most of her money.
Went through this last year with my grandmother, who was not capable of caring for herself and had surrounded herself with lots of “helpers” who had no healthcare experience and did not have her best interest in mind. We put her in a nursing home which I thought seemed very clean and well run and was located on the grounds of her preferred Catholic hospital. It was awful and she was very distressed to be there. She died within a month from community-acquired pneumonia. She had other health issues that contributed that I was not fully aware of. Had I known, I would have hired a reputable home health aide and allowed her to pass away in her own home of 35+ years. Her care and her finances were a source of much tension between me and my parents, who would not assist with her medical or financial needs despite having the time and the funds. I still feel a tremendous amount of guilt for helping to put her in the nursing home but I honestly thought she would receive better care there.
MiaMama, please don’t feel guilty. Unlike others in your family you had your grandmother’s best interest in your heart. It is shameful that medical care for elders is so inadequate, but you tried to do yuor best to help.
Now this is a juggle. I was a a caregiver for my parents until last year. I could see that it was becomming more difficult for them to maintain their condo. Neither of my brothers lived in the area and my DH felt it would fall to me to take care of them. I had discussions with my parents and they said they couldn’t see themselves living in NH near my one bro and his family b/c of the winters. My other bro is active military. They didn’t want to leave their friends and spiritual center. So DH and I talked about them moving in with us. My parents were for it, we found a house that would accomodate 3 generations. Our house we had was small. After they moved in, my mom was diagnoised with dementia. Explains why she was difficult regarding the move. Anyway, that changed everthing. They used to pick my son up from preschool, we had to stop that b/c of unsafe behavior with my son. We cooked all the dinners, my dad could still make breakfast. As the disease progressed, it became increasingly difficult for my dad to take care of her. Plus the fact I think he was in a depression. He would rather watch TV all day then take her to the senior center or go out for walks. Through my employer we have a service available that I used to secure elder care services. I had assesments performed and the agency provided referrals. I set up Meals on Wheels, paratransit and I attended many classes on dementia. Through the same agency I hired a caregiver to come 2x week to be a companion to my mom and respite care for my dad. In all this my dad cancelled Meals on Wheels and hated using paratransit.We would argue about this. Any suggestions fell on deaf ears. The juggle of all this is not only was I taking care of elderly parents but my own son who was a toddler at the time. Work full time and taking one class per semester towards my masters. I paid their bills, took my mom on errands to get her out of the house, Sundays am were spent organizing her meds for the week and when I was home dispense them. It helped my mom to have a companion and am thankful the agency I used came recommended. When it became too much for my dad and she really needed full time care we placed her in a skilled facility that accepted medicaid and my dad went to live with my brother in NH. My parents really didn’t plan for retirement all they had was SS. Assisted living is private pay here in CA costs around $5k/mo especially if one patient needs more care.
Ususlly aids are not allowed by law to dispense meds. All they can do is remind them to take them. We’re called the sandwich generation.
Portia, you’re right. Even as I was typing that it seemed too low. I’ll ask and post again with the correct figure.
I know several families in NY that pay 700-900 per week for 24/7 care if the aid lives with the person.
Ok–I have the numbers. Please don’t pillory me for labor laws, as these prices were set by the aide herself, with knowledge of the local market pricing for her services. When my grandmother was functioning well, and all the aide had to do was keep her company, make sure she didn’t slip in the shower, and remember to turn off the stove, the aide charged $120/day for a 24 hr day in which the aide slept the whole night and had several hours of each day to herself. Once my grandmother could not bathe herself or take her own meds, the aide charged $150/day. Of course all the room and board was included. She was also given bonuses periodically throughout the year.
Apparently the agency aides in the Chicago suburbs charge $170-200/day. Our arrangement was a great bargain, according to all involved.
I should have mentioned that the real bargain was the amazing care that this woman provided to our family member. We were very lucky.
When my family member needed aide services, we received them through the hospice, a part of a local VNA. I interviewed several services before picking this one, partly because of the notebook that they brought to the interview. The notebook was for logging medication, information on various services, a copy of the “Five Wishes”, and other relevant information to caring for the dying. The other reason why I picked this VNA: the people are screened and supervised, you don’t have to worry about someone being sick/vacation, and the care was excellent. At their suggestion, we had a we had a log in the notebook that helped everyone to communicate. The Aide would write down what was done during her visit, the nurse would write down what she did, I would write down what I did, it was like a running log of activities, med changes, etc. We would also use it to ask things of each other, like “you are almost out of Depends - buy more of the underwear style” or “pt is complaining of constipation - if it persists, contact RN for treatment”. Totally helpful.
The caregivers quality and cost vary greatly depending on where you are.
Living in the middle of nowhere in PA, I can actually get quality caregivers at a decent rate.
Also not to put too fine a point on it but they are also all caucasian US citizens, which makes the background check much easier.
I have a large salary for the area which makes it easy, I also am able to have my house cleaned at a cheap rate as well.
I was formerly living in NYC for 15 years, so I know how expensive this all can be.
The question I have is - do any standard health insurance policies cover in-home care? Or does that come from a long-term care insurance policy? How does one pay for this? I am thinking how difficult it is to pay for daycare and that’s only $200 a week, compared to $400-500 a week!! How to cope??
If you are really interested in elder care issues, check out the NYT blog called the New Old Age. Home health care may be covered by long term health care insurance, but it may not. It depends on the policy and you need a diagnosis of dementia and/or an assessment that the person can’t perform some of the activities of daily living, feeding, dressing, bathing, etc. Health insurance and medicare cover none of this. If your local labor pool is not willing to work for $5/hr, the costs to care for a dependent very old person run from a minimum of $5,000 to $15,000 per month. Good LTC policies usually pay out $150-200 a day for a max of 3 to 4 years.
As one comment mentioned, a geriatric care manager (esp. if you are doing this from afar)is a great resource as they can provide help finding the reputable caregivers, explaining and understanding agency’s requirements, background checks, and most importantly ongoing monitoring (even people with no past histories “go bad” or become tempted, or get “overinvolved”). I work in this field, but have also dealt with this personally. People often focus on finding less expensive ways to do this, or they piecemeal it together when someone tells them “so and so did a good job for my Mom”–there are many perils to beware of. Assuming you did get a good caregiver, think of the tax and Social Security/disability issues. If you are doing something “under the table” you may save a few bucks now, but it can come back to bit you and cost big. My family made this innocent mistake until the worker was injured on the job and my loved one’s assets were potentially at peril–and they then learned it would have only been a couple more dollars/hr. to hire the same worker via an agency. People sometimes think a home health agency means all different random people, no relationship-no control…but if you manage it right and demand customer service (or better have a geriatric care manager do this), it offers protection and can work well.
The ? re paying for it–unless you have long term care insurance, most of this type of care is out of pocket. Each state offers different Medicaid programs, and programs via Older Americans Act, which may provide assistance to some–esp. lower income clients.
Choosing the caregiver must be a thorough process.
A freelance caregiver can put you at risk if they get injured in the home delivering care and can actually sue your loved one for damages. It is often best to pay the extra money and go through a reputable agency. Choose the appropriate level of care for your loved one. Nursing services are always a higher cost that a home care provider.
Make sure the agency screens their staff and ask to see the reports. Make sure the agency is bonded and don’t be afraid to ask for proof of insurance. Ask for references that you can contact. If the agency balks at your requests, walk away.
Check out the technology options that are available today. There are systems out there now that monitor your loved ones 24/7 and actually report to you any changes in their routine. These systems can also provide you with verification when the caregiver arrives and leaves. This is all done with intelligent activity monitoring by wireless motion sensors and does not involve cameras, which most seniors are opposed to in their home.
These services can provide you with extremely valuable data to manage a cost effective care plan and give you independent, objective information on your loved ones’ overall condition of health.
My family member’s care was covered under medicare’s hospice benefit. But before we knew what would qualify, we did some research and learned that 32 hours per week (40 with waiver) of home health services were covered under Medicare A & B provided the patient was essentially restricted to the home and the services were provided under the supervision of a RN.
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One other thing, I found the “rescue button” to be an essential and do recommend it if your loved one will be alone at times. The cost was minimal, but when my family member had a problem midday and noone was there, it helped her get straightened out. She pushed the button, the service called a neighbor, he helped her out of the tight spot (literally). Problem solved.
When my mother was diagnosed with metastatic lung cancer, knowing the prognosis was poor, we contacted her long term health care insurer straightaway and got her certified for home health care as needed (i.e., her doctor certified her as meeting the criteria under the policy of needing help with the basic tasks of daily living as defined in the policy). She and my Dad had purchased a policy through his company when they were in their 50’s, and she had kept it up after he passed. We also got her a “Life Alert” device and contracted for their service. At first Mom had home health aides (through an agency) come in on a spot basis since her initial cancer treatment went pretty smoothly and she didn’t need much support. Later, after her relapse she was pretty good for a while but then she started developing complications and began using much more home health care and ramped up for the last four months or so to 24 hour home health aides. She got home health aides through two different agencies over the 15 month course of the illness with nurse supervision. The agency was quite good at providing the same aides for extended periods of time so relationships could be built. One of the reasons she resisted hospice when she was getting worse was the quality of her relationship with these home health aides but we finally were able to make her understand that she could still have them come in even if she accepted hospice. The long term policy was very limited in the amount of hours of home health aide help it would pay for, however (no more than four hours/day, no matter what the stage of her illness) so for the 15 month course of her illness we paid about $20,000 out of pocket just for home health aides to be with her and help her, and got about $11,000 of insurance benefits for home health aides. She had a lifetime maximum of $275,000 on her long term health care policy, and had never had a need for it before this illness. I am an only child and we live 3 hours away by plane. Having this care was a huge help. We got good agency referrals through people we knew in the industry in Mom’s area and through her hospital, so for this we didn’t feel the need for a geriatric care manager. But I am familiar with their services and depending on the nature of the support and oversight your elders require they can be extremely helpful.
We went through a version of this with my grandfather. He lived in one state and all family members were in other states. He refused to move from his home (even into assisted living) because he had friends and activities there. None of us could move due to other parts of our juggle. When he initially started to need help, he was adamant about not having anyone come into the house. He would get sick or fall, spend some time in the hospital and convalescent center, and be released only upon showing that someone was coming in to help with care. Shortly after getting home, he would fire the person. Eventually he met an aide at the convalescent center with whom he was comfortable and she cared for him about 4-5 days a week for many years. When she had a health crisis of her own, a relative of hers took over. Unfortunately, the relative was not as good, did not care so personally for my grandfather, cooked food he did not like and was difficult for his digestive system. Then we found that she had been getting him to give her extra money besides her salary.
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When your elderly family member is dependent upon the care giver to help them with very personal tasks like bathing, dressing and toileting, they become vulnerable to implied and overt coercion. Apparently, this particular person was demanding additional funds and my grandfather was afraid if he did not give it to her, she would not take care of him properly. Part of his fear included the idea of being humiliated if he could not meet his own needs. When we became aware of the situation, we took steps to fire her and hire another care giver. However, one key step was never taken despite my recommendation. Had my grandfather not had full access to his assets, the caregiver could not have demanded the funds. My mother should have left some minimal spending money in an account for my grandfather and put the rest into accounts that she managed. She paid most of the bills on line for him, but she should also have locked up the money away from the chance of coercion. My grandfather would have agreed to such a plan, but my mother did not want to reverse the roles of parent and child so openly. She also was a bit hesitant to take on monitoring all of the bills.
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It is very emotional to start doing these tasks for one’s parent or other elderly relative. However, if your relative needs in home care, it is a kindness to remove the temptation from the caregiver and let the caregiver know that the elderly person has no real access to any funds.
How does one track down a good geriatric care mananger? Are there any certification or liscensing requirements? Is there a referral resource?
My 82 year old MIL lives all by herself in the boonies of Oregon. We just got back from visiting her, and are really worried about her situation. She’s obstinate about staying in her home, which is a day’s flight/drive from us.
There are many good points in this blog today. Thanks Portia and Texas Attorney Mom.
I’ve done this juggle. It is beyond exhausting.
The better you do your job, the longer your elderly relative lives and the angrier your spouse and children are because of the demands on your time. I thought I was setting an example for my middle school and teenaged kids by caring for my elderly relatives and involving them in the care. Maybe they will see it positively when they are older; now they just hate the work, the smells, the endless calls [from hospitals, doctors, aides, pharmacies, neighbors], the paperwork, the physical drudgery.
The staggering financial outlays are easier to accept than the misery of ripping yourself into pieces trying to stay working, raise your offspring and do the right thing by the people who raised you.
Think of what happens to your career prospects when you are in a company which is “streamlinig” or “rightsizing” and you miss a meeting to take Mom to a crucial doctor app’t. Then another meeting - the aide called in sick, or didn’t show up. Then another meeting - you’re interbiewing more aides. Then another meeting - Mom got angry and locked the aides out of the house.
To Gay Dad - It is commendable that you want to care for your mom. However, ‘having a nurse to come in and care for her’ is not realistic. An RN with no dpecialized geriatric training makes $60-80,000 per year. You can’t expect to hire a nurse for your mother. You will have to hire a semi-skilled worker for daily care for your mom, which means going thru the whole vetting process the other psoters are discussing.
To Working Mom - If your parents have only Medicare, virtually no homecare is covered. If they are impoverished, they will qualify for Medicaid; the amount of homecare covered varies from state to state. Every managed Medicaid policy is different too. Some managed Medicaid policies pay nothing for “custodial” home services - regular daily help to cook, bathe, dress, etc.
Long term care policies vary in what and how much care they will cover. Some policies do not cover any personal care if there is no professional need for home care, like dressing a wound or physical therapy. Virtually no policy will fully cover live-in aides.
Caring for your frail elders is hard for you, who love them. Recognize that the aides doing the heavy lifting DON’T love your parents or grandparents or aunties. They likely do not want this unpleasant job and would take anything else if they could. You will have to work hard to see that they do what you are hiring them to do, no matter how well you pay them.
My God, how do people afford this? What do other countries do?
My husband is an only child so we moved his mother to a little house around the corner from us when her dementia became noticable. We own an online service that enables people like us to put a quality Internet camera in their loved-one’s home, and it has been a tremendous help to us. We put the camera in her den where she spends most of her time, but where it is least invasive of her privacy. So even though she lives close, this ability to check on her often has enabled her to live alone at least a year longer than we had originally expected. We also know beyond a doubt that her part-time caregivers are wonderful because not only can we see, but we can hear almost everything that is said in the home. This is not a hidden camera, so the caregivers know we can be monitoring her home at any time. They don’t seem to mind and we couldn’t do without it!
When you pay people to do something - whether it’s care for your kids or care for your parents - they won’t ever do it the way you would do it. Ever. Because they don’t care about your kid/parent the way you do. You can’t buy love.
Anonymous said, “How do people afford this? What do other countries do?” It’s very simple - in other countries, people take care of their own children and their own parents.
In the U.S. we’ve got these expectations that everyone should have two cars, a vacation every year, the latest technology, etc. etc. All that stuff is expensive, and so we end up with two working partners in a marriage, “just to get by.”
My step-mother actually sent her mother to live with her (white) brother who lives in China with his Chinese wife and her family, because the quality of care that her mother got there was so much higher than anything the family could afford in the U.S. Step-grandmother lived in her own apartment which was adjacent to her son’s apartment, and she had daily contact with her Chinese daughter-in-law and the her family. I think they had a maid to help with the daily stuff, but the majority of the car was done by the family.
It can be done. It’s done all over. You just have to have your priorities straight.
Amy, You are correct that traditionally, kids in Asia took care of their parents needs. However, the parents lived in the same house (extended family) and died fairly quickly (lack of US standards of care). The social situation is changing–the extended family lifestyle is less and less prevalent (at least in India). As women start working, they don’t have time to care for their elders, and as they move away from home to follow their careers, they have less of an obligation/desire to take care of their elders. We now hear a lot of stories about elder abuse/ insufficient care in India.
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Also, I don’t think that Americans are shirking caring for their parents due to materialism–there are some real difficulties that they are facing and are trying to do their best. In India, most middle class families have maids who come every day to clean the house, run errands, and do laundry (as do your relatives in China). Also, living in an extended family means that Grandma is always available to help with the kids (when she is healthy). American parents are expected to work, take care of the kids, and take care of their parents with no help. This is really tough.
Amy -
You are so right. Other people do this. It is because it is not an expectation here that we are so screwed.
The problem is not only the vacations and 2 cars. The problem is also others’ expectations of your time.
Spouses want and deserve attention. Kids and friends too.
Where does your boss fit in?
How many times can you tell your family there will be no music lessons or museum trips because there is no money, no time? Because you are so terrified of being fired like the people in the cubicles all around you, and then the whole enterprise goes kaput.
The NY Times today has a front page article about a 104 year old lady who got a pacemaker at 99. Great. Somewhere, there’s a grandchild [or a greatgrandchild] whose parents can’t afford orthodontia.
Oh, and remember, the world is looking for you to trip up and call you a terrible person - didn’t come to the school play, never came to the kid’s game, left granny in the hospital 4 days without any visitors, always runs out at 5PM and leaves the urgent projects on other people’s desks. TSK TSK TSK
Howard
My husband and I make very good money. We live modestly in an apartment and keep our expenses low in order to save for retirement, 529, catastrophe, etc. If one of our parents ever got sick and we had to pay for childcare and eldercare, we’d be in serious financial straits. We don’t even own a car (city-dwellers), most certainly do not have the latest technology, and don’t take vacations (parents who live nearby at the beach). This kind of care is a burden to the average American not because Americans are living in the lap of luxury, but because salaries simply are not keeping up with expenses for the everyday earner. Moreover, I’m sure lots of people would love to have just one car, but that’s often impossible with two people working. We can’t all live walking distance from work.
As to other countries, I’d agree that the Chinese aren’t jetting off on vacations, but many Western Europeans live far, far better than your average American, particularly with respect to travel.
I lived with my mom and gram when my gram was diagnosed with cancer. When I did move out, I went around the corner (more for my own sanity than anything). My gram’s care was handled through Hospice, my mom, my aunt and myself. My mom ended up taking disability and stopped working (she had a nervous breakdown because of the stress of her job and caring for gram). My gram could afford to keep them both in the lifestyle they had (lived in gram’s house that was paid off for 30 years already). My mom became my gram’s caretaker, with a Hospice nurse coming in once a day to do the things my mom couldn’t. I became my mom’s caretaker (juggling this with wedding plans, grad school applications, and a full time job, and a fiance that I lived with).
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We didn’t pay much for care because my gram saved well for retirement and well, retired to her own house (didn’t move, went only on vacation with the family, and just enjoyed reading the entire works of Danielle Steele, Barbara Taylor Bradford and the like) and had family living with her.
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As a young person, I am fearing the day that I’m taking care of my mother and my children because of the financial burden. My mom has planned for this, and is an aggressive saver. I can’t plan for it now, because I’m still in school. But, when I get out, our bills are so low now that we can afford to live off one salary if we had to. And one thing is for sure… when my grampa died, my gram didn’t want to live alone, so mom and I moved in. My dad is remarried, has a stepson and a much younger wife. So, when mom doesn’t want to live alone, she’s coming to live with me. Child-care and a cook built in. She gets me to care for her and a free roof over her head. I think that’s a fair trade and so does she.
I’m sure I won’t be popular for this, but curious if others have experienced: I love my mom, and when the time comes, I want to make sure she is well taken care of. She is not a good saver, makes great money, but has a spending problem. Like I said, I love her, and she is a good person, but I don’t get along with her. Livig together is not an option for my sanity and happiness. My parents divorced when I was young, and I lived with my dad and just don’t feel a closeness with my mom. I hope this is something that I won’t need to think about for a long time, but would welcome any pointers or other’s experiences.
My parents divorced when I was 20. I never got along with my dad. I get along with my mom well (as mentioned above), but my dad and I can barely have a civil conversation. My only hope is that his new wife loves him enough to take care of him. he’s in his mid-sixties with heart disease. If she doesn’t, then I don’t know if I could handle him as well. I guess I’m hoping I don’t have to think about it (is that rotten of me or what?).
