Newbie questions about 24/7 caregivers: legal questions, etc.

Parent Cafe
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<p>Thanks readers and contributors. My 87 year old mother has been in failing health for a long time with extensive help from me (I live a few doors down the road). Over the past 6 weeks we have been to the ER three times, hospital twice, and she is now in a rehab/nursing home for a second round. We have agreed that she will have a 24/7 caregiver (probably two women alternating) when she goes home. On the web I have found licensed agencies. The two from whom I have had the best feedback describe a scenario where they vet the women with references and background checks, take a fee, and then step out of the picture.The caregiver and employer arrange payment. One agency is sending two women to be interviewed in the nursing home by my mother and me tomorrow. The cost is $150/day. I want this all to be done legally and could use some guidance.</p>

<p>How can I have oversight that the women, if hired,will pay their taxes? What if there is an injury on the job? Can I simply have each sign a paper that she will not hold my mother/our family responsible if there is an injury?</p>

<p>My mother has $60,000 in savings and a paid house worth $275,000–$300,000. Should we use cash first or should we immediately turn to a reverse mortgage? Any insight on this would be most appreciated. </p>

<p>My mother is very frail but quite cognizant. She asked, what will happen when all my money runs out? I soothingly told her just to think about getting well/stronger and having her family (me, granddaughters) around her and concentrate on the present. But if she lives longer than her money holds out, my scenario at that point is that she would go to a nursing home on Medicaide. (BTW,my mother-in-law and her late husband recklessly blew through a fortune; she now lives at age 94 with Alzheimers in a nursing home. Without help from his siblings, one of whom is a lawyer, my husband and I took care of a profound amount of everything.)</p>

<p>FYI My county’s office of the aging does not provide enough for what my mother needs; for example, she needs someone to bring her food in bed before she gets out of bed because she is so weak. 24/7. The social worker at the nursing home said she would send me a list of caregivers provided by Medicare (I didn’t know they existed? Found nothing about this on the web? but she said, it is my responsibility to tell you they are not nearly as good as private care.</p>

<p>Just to spice up the story, I have been through hell with my mother my whole life. Not her fault but she is manic-depressive and has been hospitalized with my assistance many times (rounds of ECT, etc). I pulled her out of the car to abort a car exhaust suicide attempt about ten years ago). Assisted with my father through a long illness and death. And I have two college-aid daughters (one in, one on the way) over whom to worry, especially about financial aid… I have one sister who has turned her back on the situation. She does not return my mother’s phone calls. And she (and her husband) is a nurse (they live far away).</p>

<p>Any guidance/feedback would be most appreciated!</p>

<p>Sorry for the long post and sorry I couldn’t avoid the complaining tone. I just want to do things responsibly, legally, and wisely.</p>

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<p>Dharma, I don’t have any advice to give, but I just want to say that I don’t think you have a complaining tone at all.</p>

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<p>So sorry you have to deal with this. We had 24/7 care for our mother in her home for 14 years. We used an agency because we could never get comfortable with other options. I have known friends who essentially hired a whole family as caregivers to elderly parents and the family just rotated various members in and out of the home around their own family obligations. That would have been my preference.</p>

<p>I wasn’t in charge of the taxes but believe we gave 1099 forms to the caregivers. They were responsible for filing their own taxes. Once someone gave us a fake SS# and we got a letter from the IRS. We were not at fault. The caregiver and the agency had to deal with it.</p>

<p>The nicer the work environment, probably the better the caregivers you can attract and keep… especially if the patient is difficult. I recommend a hidden webcam. I hate to say it, but we ended up with a case of elder abuse not caught until a nurse saw it on a hospital camera while our mother was briefly hospitalized and the caregiver was alone with her.</p>

<p>good luck</p>

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<p>Does your mother have chronic health conditions that could justify palliative care? The people at the rehab should be talking to you about this option. If she were in a palliative care program, she would be assigned a social worker who could help you with many of these financial issues/questions.</p>

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<p>Thank you fendrock, that was very nice of you! The social worker at the first nursing home just helped with the discharge and setting up limited medicare visits, which are insufficient given my mother’s now more extensive needs? What is “palliative care?” Her diagnoses are irregular/rapid heartbeat, occasional high blood pressure, and acute diarrhea (over years) which leaves her exhausted, inert, dehydrated, unable to walk… ALH, thank you for your feedback!</p>

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<p>Here’s a good description of the differences between palliative care and hospice care:</p>

<p><a href=“http://www.caregiverslibrary.org/caregivers-resources/grp-end-of-life-issues/hsgrp-hospice/hospice-vs-palliative-care-article.aspx”>http://www.caregiverslibrary.org/caregivers-resources/grp-end-of-life-issues/hsgrp-hospice/hospice-vs-palliative-care-article.aspx&lt;/a&gt;&lt;/p&gt;

<p>and another good link:</p>

<p><a href=“http://getpalliativecare.org”>http://getpalliativecare.org</a></p>

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<p>Was she ever in the military? If so, look up Veterans Angels.
A site I happened on was Caring dot com. Sort of like an Angie’s list from what I can tell but for nursing homes and nursing care for seniors. Someone called from there almost immediately and while I didn’t need their services at the time they had a ton of information for me and answered lots of my questions (I didn’t sign up for anything and didn’t pay anything but I’ll be back in touch when the time comes) They can provide run downs of costs/services of senior facilities in your area and had suggestions that I had not even considered. Just a nice lady on the phone over all. </p>

<p>What services are you looking at? Although I’m not there, I have friends who have dealt with this and gone through services.</p>

<p>You aren’t responsible for them paying their taxes. Just keep your records and give them forms.</p>

<p>My FIL had the same scenario as your mom–fell continuously, hospital, near death, rehab (which is why I was internet surfing). Then along came a doctor who changed up all his heart meds/blood thinners–and he’s doing 180 degrees better. He was confined to a wheel chair but now back to a walker. Not that this is your mom’s problem but if she is on meds get a second opinion on her therapy. Small changes can make huge differences.</p>

<p>Good luck! And you aren’t complaining. Just telling the truth.</p>

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<p>Sending HUGS to you during this difficult time. My family is dealing with a frail, aging parent who has dementia and has fallen and broken 2 hips and 1 leg in the last 4 months. It is so hard to switch between dealing with aging parents and also paying attention to your children’s needs.</p>

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<p>Powercropper and Dharmawheel, also consider posting over at the Parents Helping Parents thread. It’s all about dealing with the issues presented by our aging parents. Dementia, in-home caregivers and when a parent needs to move out of their home are issues we discuss frequently and at length.</p>

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<p>It’s important to check your CPA about any required withholding and insurance benefits if YOU are the employer. In HI, if you have any employees who work 20 or more hours a week for at least 3 weeks consecutively, YOU the employer must offer health insurance. It makes employers not want to have people work more than 17 hours per week or so. If the person is an independent contractor (and works for himself or herself), THEY pay their withholding, worker’s comp and other benefits. If they are YOUR employee, YOU pay these benefits.</p>

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<p>The reverse mortgage takes a lot of work, and gives about 25 % of value. Will you be doing all the work, or your MO?
What I would suggest is that when you are ready for a facility, make sure it is NOT one that is only private pay. I’ve had clients in private rooms for several years, when they paid top price, and when they switched to Medicaid, they could stay in same SNF, often allowed to stay in their private room. Other facilities fore an abrupt leave when the $ runs out. </p>

<p>Honestly, if one can afford a private aide for a difficult person, so much better. On the other hand, my FA lived in an ALF last 4 months of his life. He loved the communal meals, the activities, the PT room, etc. He was far better in what he called a 4 star hotel than alone with private caretaker. He never realized that I added a private aide during day, then 24 hours, for last few months of his life. </p>

<p>Point is, I thought about what his needs were. He thought his private aides just liked him and gave him special attention. He liked socializing with a lot of people. Had my parent been different, more a loner, I would have kept him at home with private aide. I did do a financial spreadsheet, and felt I splurged his last 2 months on this earth. At that point, I wanted the best for him. Had I been more worried about finances, I would have shifted him to Hospice. They would pay for private nurses, meds, etc, but not 24 hour companionship. </p>

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<p>You have two things to figure out – the business/tax/employer side of it, and where to get the most suitable care for your mother at a rate she can pay, long-term. From what you said, she does seem to be at risk of her money running out. Maybe she can buy an annuity, as insurance against outliving her money.</p>

<p>She may need to start with in-home caregivers, just to stabilize the situation, and then move to a facility where she goes in as a private pay, with enough money to get into a decent place, but will be allowed to stay under pretty much the same terms when the money runs out and she becomes a medicaid patient. I have heard that the places who will take you in after the money runs out, are not places you would want to go.</p>

<p>If there will be any in-home care, you need to talk to an accountant, at least. Find out whether your mother or you is becoming the employer. (Probably better for you if she is the employer.) There are absolutely tax and reporting obligations (“nanny tax”) that arise pretty early on, in this kind of arrangement. There is also worker’s compensation, which may already be covered on your mother’s homeowner’s insurance. You would have to call the insurance agent and ask.</p>

<p>A good elder law attorney should be able to give you a 1-2 hour consult for about $300/hour, and give you brass-tacks advice about how to proceed.</p>

<p>Hospice care is something you should ask the doctor about. People are eligible when it’s medically believed that they are in the last six months or so of terminal illness. It has pros and cons, as the doctor and elder lawyer can explain. The government does take over certain financial responsibilities in that situation.</p>

<p>I feel very badly for you. It can be overwhelming, in the sandwich generation, and the burdens do not seem to fall equally, even within a family. I remember when my dad entered hospice, and my feelings as the process unfolded, thinking to myself “THESE are the facts of life, and they certainly did not explain it to us in seventh grade.” I hope that brighter days are ahead for all of you.</p>

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<p>

While this may be something to keep in consideration, it is not true for every facility. Just as you shouldn’t judge a book by its cover, don’t judge facilities by how they look. When I used to work in hospice, I saw some beautiful assisted living facilities, etc. that looked like four-star hotels, but who gave inadequate care. And I saw some facilities which needed a good paint job, were totally outdated in regards to home decor, but gave excellent care. One of the standards that our staff used to look at when deciding if a skilled nursing home facility was adequate or not, was, what was their track record regarding bed sores. </p>

<p>I have an elderly aunt (96) who has been in hospice since last February for COPD. She was living with her daughter and they had 24/7 caregivers being paid out of my aunt’s dwindling assets. She eventually ran out of funds, so she had to go on Medicaid and they had to move her to a facility that took Medicaid. The hospice agency actually gave them the names of several places to look at (this was in the Rio Grande Valley of Texas), and they finally settled on one place that was more like a home. It was run by a middle-aged couple who had four beds (rooms) in their house dedicated just to hospice patients. It was their full-time job and they do an excellent job caring for my aunt. And my aunt is happier there, feeling relieved of guilt from her daughter having to bear the brunt of the responsibility of caring for her. But yes, this wonderful place is licensed and takes Medicaid. And again, the hospice case worker and social worker worked with them as the funds dwindled down to find a suitable placement. </p>

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<p>I’ve been reading some of the linked information about palliative care, and I’m still confused about what it is. Is this a service you purchase? Or a philosophy? Right now, we have 24/7 care for my MIL through a service; two women are her caregivers, one four days a week and one three days a week. Would palliative care take their place, or would it be something to supplement what we are doing? She just got put in the hospital again last night – fourth time this year. She sooo wants to stay home, but I just don’t know how long she is able to continue like this.</p>

<p>Sorry for being so dense. I took the six-question survey about whether we needed it and answered yes on all six questions so I guess we do. :)</p>

<p>ETA: Dharma, you don’t sound at all whiny. (((hugs)))</p>

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<p>It’s a type of medicine, like gerontology or cardiology. Specialists in palliative medicine are experts not in curing diseases or conditions, but in making the patient feel better while having the disease or condition.</p>

<p>Palliative medicine can, in some cases, be aggressive. It could involve surgery, for example to remove a mass that is causing pain, even though removing the mass did nothing to stop the underlying cancer. It could involve drug treatments. </p>

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<p>Thank you! That makes sense. So it kind of is a philosophy, in that this is how we are choosing to treat you, but it’s not a replacement for caregivers, then?</p>

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<p>Palliative care is elected (it’s covered by insurance when a use is indicated) when someone has chronic health issues, and they want someone to help coordinate all the care that is needed. So, no, you don’t purchase it, but you have to qualify for it. Many times when someone is on palliative care, they can eliminate many physician visits because the nurse comes to the home for check-ins - they may draw labs, check vitals, etc. It’s kind of like having home health care, except on a permanent basis. ‘Typically’, palliative care includes these visits about once a week, but this can all depend on how the patient is doing. If they’re having a hard time with symptom relief, the nurse may come out several times that week; if they’re stabilized and doing OK, they may only come out every other week or so. It all depends on the chronic illness and how well the palliative care staff is in minimizing symptoms. Palliative care, like hospice, can provide a home health aide a couple of times a week to help with personal grooming. </p>

<p>The difference between the two is, if someone is on hospice and is living at home (or in a facility), if they have a medical crisis that requires hospitalization, they can continue to be on palliative care if they choose to go to the ER or be admitted to the hospital. They can continue any kind of aggressive treatments they want, such as PT, chemo, if they have cancer, etc; they can continue to do invasive testing, if they want. Once someone chooses hospice, if they are living at home (or in a facility), they are basically saying they are opting out of the 911 system. If some crisis happens, they call hospice - there are no more long hospitalizations, ambulances, ER visits, invasive tests, PT, etc. It is solely about symptom relief. I know it’s hard to distinguish between the two - but most large hospice agencies now offer palliative care, in addition to hospice care. Providing palliative care has been shown to keep medical costs down as there is a sort of goal to minimize hospitalizations; but if someone wants to go, they can. As several stories have shown here on this thread, in the end, it usually reaches a point where a loved one is tired of going to the hospital so often, being there several days, then going to rehab before going home. </p>

<p>Of course there are stories where people in hospice do end up in the hospital; usually that happens when someone is having severe symptoms that cannot be managed at home, and a brief hospitalization is required to stabilize pain management. In most cases like that, though, the patients, once pain is controlled, are not stable enough to transfer back to home, and they end up staying in the hospital until they die, which usually comes within a few days. If there is a risk someone could die during a transfer, then it usually doesn’t happen. Within my own family, we had one of each - my dad died under hospice care at home; and my mom died under hospice care while in the hospital. </p>

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<p>OoooooK, I’m starting to get it. :slight_smile: My SIL is the sibling on-site so this would take her buy-in.</p>

<p>Let me ask you this – would MIL qualify? She is living in an assisted-living complex in a duplex with minimal assistance from the facility, the lowest level they offer. They will bring meals to her duplex, there’s an alarm system if she falls, they monitor when she first flushes the toilet in the morning – that kind of thing. She’s had issues with congestive heart failure. Yesterday, for the first time in weeks, she rode her scooter to the main house to eat in the dining hall and once there she got dizzy, heart was racing, sweaty. They called 911 and transported her to the hospital, where she was given a CT scan and determined to have ILEUS. If she had palliative care, what would have happened? Would she still have gone to the hospital? How might what happened there have been any different?</p>

<p>I feel so bad for my MIL, 86, because she is all there mentally but is so frail physically. She does not want to go into a nursing home, but is it crazy to keep trying to keep her home? This is her fourth hospitalization this year. :(</p>

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<p>The way I understand it is, palliative care is to treat some condition. A frail elderly person wouldn’t be undergoing palliative care unless there was some condition to palliate.</p>

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<p>Well, she’s had repeated bouts of congestive heart failure, which is one of things mentioned on the palliative care website. And her kidneys are functioning at 25%. She’s taking meds for high blood pressure, etc. Really, she is just getting increasingly frail. Hospitalizations were four months apart, then two, then one and one again. It’s clearly just becoming harder for her to stave off whatever is going on, and she’s not bouncing back. I’m having my dh read all this, and he thinks that they basically are doing palliative care. The previous hospitalization the doctor flat-out said that they are past the point of getting her back to where she was 20, 10 or even five years ago. They are just trying to keep her stable.</p>