What is the reality of having full-time care in the home?

Hugs! I pray that hospice gives all of you the peace for her last days to be comfortable and pleasant.

Be kind to yourself during this time.

UPDATE: I am the original poster. My mother has had some serious health problems and a few visits to the ER lately. The real problems started a bit after I wrote for advice. And continued until just recently. Realizing I couldn’t handle all the health problems anymore and she was declining, I asked her PCP if she would be eligible for Hospice. He wrote the referral on May 5th and on May 6th, she was accepted into Hospice with end stage chf. They are wonderful, and although I still do some things for her, she has medical care if needed every morning and someone who comes in around noon to make her bed and make her lunch. It was the medical care I was so concerned about. Her legs weep and she has a lot of fluid. So I guess we are looking at end of life care. It’s difficult to accept. So far, she is at home. I suppose she can remain at home unless something changes. We have a beautiful hospice facility close-by.

Thank you all for your responses. All so informative!

It is perfect for me and my husband who has Parkinson’s but is still able to perform ADL’s himself.
I have two live in caretakers, one four days and the other three days. They take care of him so I can do housework, shop, cook, go out etc.
It is expensive but well worth it. My stress level is low now that I don’t have to be by his side every minute and get up at night with him.
If you can afford it, by all means do it...just check references. Insist on good hygiene for both caretaker and your loved one . Stress honesty and consider them a team member and not a worker.

Opps

My mother-in-law did it towards the end of her life. My husband was an only child, and we had no room for her to move in with us. I believe she ended up taking out a reverse mortgage on her house to pay for it. It worked out fine. She had two very caring and patient sitters.

What’s the point of all of this? Most of us have led productive lives, and our loved ones, family, country, etc. have supported us. Now we are no longer productive. What makes us think that we should do nothing and let the support continue; sometimes at a clearly unacceptable rate.
Saying that I deserve my retirement, I have worked hard all of my life, or that I am old and ill and deserve to be taken care of, might be true, but not when it becomes such a burden to society that people in their productive years are being punished – as well as their children.
You know it and I know it; sometime in the near future the load will get too great, medicine will not justify the cost, and countries around the world will have to consider a humane way of taking care of us – the problem.
Until that happens people like me will have to wait around till our cells wear out, we get one of the big three, and cause so much cost and effort to be wasted on us.
As John Wayne used to say “That’ll be the day!”.

I am actually looking for a roomate/nester that will help with my SO's care for low to no rent, but I am looking for someone I can be friends with and who will stick around/friendship. That is my alternative as we DO NOT have the funds for a live in carer but there are many nice older capable folks looking for nesting or cheap rent, I am hoping I can find the right one for us!

My mom felt the same. Does she need 24/7 care? My mom is now in a very nice assisted living facility where she gets care as needed but also socialization. Before she was in a senior independent living facility , her own apartment with meals prepared, cleaning weekly, laundry if desired. To me it was a great alternative. She now needs more help and is in an assisted living, again care she needs( dressing, showering, meals , cleaning, meds etc) but tons of activities. Socialization and activities are a major benefit physically , mentally and emotionally for elderly. Can’t really do that at home.

I have live in help to care for my husband who has Parkinson’s . He does not need much personal care, but needs med minding and constant supervision especially when ambulating as he falls frequently. They get up with him at night, give him breakfast and lunch. I take care of dinner which they eat with us.
I can now sleep at night, go out and not have to worry. I consider them part of our care team and not employees.
it is the best thing I ever did but it is expensive and no financial help is available.
Ifyou can afford it , by all means , do it.
It took a while to get over the intrusion of a third person in the home but is working out fine.

Where I live, once you get past 6 hrs a day of in home care, it is cheaper to go to assisted living. There are benefits to assisted living. Activities are provided and social interactions are possible if you leave your room. Meals are in a dining room, so that is more social interaction. Usually you can't provide this kind of thing in your home. Do you plan to have people over for card games, dinner parties every night, exercise classes, painting classes, musical performances twice a month? This is what you get at assisted living. These kinds of things are supposed to delay the development of dementia. Try visiting some assisted living places when they have their free lunch presentations. She may change her mind when she sees the place. If she runs out of funds, then what are you going to do. Please make sure your legal papers are in order, POA, medical POA, will.

Full-time care as it relates to a night nurse, who would stay with the elder for a 12-hour night shift is as follows: These are LPNs and RNs, who stay awake all the night long to care for the elder, who is typically sleeping, but may have night-time bathroom trips. In 2014, we were lucky enough to have an LPN, who was a friend of my late mother's and she was kind to us - exceptionally.. We were very fortunate because I had to drive 500 miles to get to my mother, who was living alone and WAS FAILING IN KEEPING HOUSE. This LPN did 6 days of pro bono work for us! However, the going rate for night shifts in 2014 was $12 per hour and that was "on the cheap" because this woman was a friend.

I am just astounded by the costs here. When I did the math it did not add up for our family.

Taxes for those who hire a private duty vs a company:
https://www.thebalance.com/household-employment-taxes-3192937?_ga=2.73734674.1096113486.1550540248-2092615929.1549630136

If you want to know more information about how to legally claim a caregiver as an employee, the Care.com site makes it really easy!
Nanny/Private Duty Nurse Tax by state: https://www.care.com/homepay/resource-center/requirements-by-state

Things to get filled out before you hire a caregiver:
1. I-9
2. Federal W-4
3. State W-4
(https://www.care.com/homepay/w-4-forms-for-nannies-and-caregivers-1304191931)
4. You will need to apply for an EIN number as well because you are an employer.

Hope this helps someone besides me!

it sounds like she’s scared, and has little confidence of/in the future. Hired help, Is just that, hired. Not that it’s bad, I’ve seen it working and not. Money’s not the best motivator.
I went into carry for my mom thinking it was temporary, her needs would change an someone else would be needed to take over, but there was only me. At 49, my son raised, and on his way, now I’m going to lose out on my life !
She passed, reflections of 17 yrs of everyday care, surprised and gladdened. I became life to someone loosing theirs.
it intensified any Love I understood, it made my faith stronger and clearer. I saw around me friends and family that despaired. The rewards of true love never cease.
if you can find love ones to pass around to help, encourage them, even after many complaints, the good ones grow.
when as a child I was lost, it was because I didn’t look close enough. In caring for someone it’s needed almost daily.
The physical part, lifting if needed, has remedies. Doctors, shopping, cooking, all important, but time spent with little conveniences and comfort rule the day.
Sounds like you really love your mom, your questioning Her needs and trying to resolve her worries. our relationships an needs change over time. Not what we usually thought.
This is probably one of the most feared times in life on both sides. But what better Love could you give a parent, even if you thought you were cheated. All the more reason to give.
now, I wouldn’t have changed things much. I feel and sense I could of done more, loss brings that guilt out. But then you'll realize it may have been the best thing for you both.
I learned to see the blind world she was falling into, I learned I’m more capable than thought. There is no “been their done that” examples, like Gods mercies, new everyday.
if you commit, you’ll carry a truth, few know, and a love even fewer will ever experience. Keep your sense of humor, oh there’s nasty stuff, but it’s the easiest to forget.
I put you in good thoughts, I think you know your choice.
I used this site over many of those years, not always for my issues, but in reading what others were struggling with too, the courage of love really conquers.
My only family was my sister, she’s spent the last 26 years
quadriplegic with MS. Trying to keep her close in with all of this was profound. Her mind has since slipped away.
Life. What do we know ? If we all looked at our heart first before we let our minds interfere. We’d see better.

I was made power of attorney for health care decisions and financial control for a married couple friends of mine who had no children or close relatives. The wife had frontal temporal dementia, the husband short term memory problems the kept him from understanding how his wife was changing. When she became incontinent and was wandering, she needed 24 hour care.
I was using Visiting Angels 3 days a week, 3 hours day before this and then used them for 24 hour care. That cost about $13,000 a month. Two ladies alternated weeks. They did a good job, but I wanted something not so costly. I had found a memory care apartment for them in an assisted living facility and convinced the husband it was time to make the move in order to save money. The memory care apartment would be around $10,000 a month. The care there was excellent and the staff nurse guided me through her decline until hospice was necessary. They assured me they would never have to leave as they provide care to the very end. After 18 months of regular payment, if they ran out of money, the facility would accept whatever public financing was available. The husband has now been there over 5 years and we haven't run out of money yet. The wife only lasted another 5 months before passing away. The day of the move another friend came and took them out to breakfast in a nearby town, then to have their nails done. In the meantime, the movers and I were setting up their new apartment and made it look just like it was in their home--the same furniture arranged the same way, same pictures on the walls, etc. When they got there, the husband saw his favorite recliner and sat down with a sigh of relief and has been happy ever since. Only once has he expressed a desire to leave and that was in frustration in not being able to talk to anyone at meals because of how far they had declined. Since then, new people have come and he sits with them at every meal and they can talk to each other. They probably say the same things every meal, but that's o.k. He sees a doctor once a month to check his blood pressure, etc. I see the bills and drugs being used and if I see a change, I ask the staff nurse about it so I can keep up with things. I was so grateful for the help with his wife and the guidance I was being given as she declined since I had never done anything like this before. And as a bonus, the man who was in charge of leasing these apartments wanted to know why I was doing this for people who weren't even my relatives. I told him the story about how I met them 40 some years previously and how we quickly became friends and how when I had to change jobs, I ended up working in the same school as my friend, not knowing she was there when I was hired. We became closer friends as couples--worshipping together, vacationing together, etc. This man, JJ, and I became friends over the 2 1/2 years it took to get them to move in and left shortly after that to help care for his own father.
His wife encouraged him to get his real estate license and he did. It took me another 2 1/2 years to empty out their home and get it ready to sell and JJ became my realtor, giving me advice on how to prepare, what to fix, and guided me through the paperwork until the sale was complete. What a service! I am so thankful for the guidance and help I have received in taking on this responsibility. The sale of the town home provided another 2+ years of memory care costs, too.
Having the authority to make these decisions was key. Then finding the right place was a wonderful answer for their dilemma. The husband remains in good health--doesn't even need glasses at age 92--but the short term memory issues are worse than ever. But, the staff is there to guide him, give him his meds at the right time, etc. He is intelligent, too, just can't remember short term. We joke about being brothers of another color, as he is black and I am Swedish white. But that is the role I play--a brother.

Needtowash, let's just agree to disagree.

Hope you have control over how the caregiver's work is done. Not down to how to release the tape on the diaper, but what hours will she work, what duties will she perform, what products will she use, what activities and how they are done will most please mom.

Would you let this person into mom's house without training her or telling her what her responsibilities are? I doubt it. Would you have them bring the tools, diapers, etc used for the care? Or does mom and you prefer a specific brand? Caregivers are employees unless they work for an agency.

I was my mom's caregiver for four years and paid as an employee a minimal amount. All taxes withheld, Medicare paid, workmen's comp and all. It was legal according to the IRS, Department of Labor, multiple attorneys, a CPA and a geriatric care manager as well as a conservator.

I tried some in-home care for my 97 yo father. Unlike your mother, he was very resistant to having someone in his home, especially since most of the time they weren't "doing anything." Actually they were doing what I needed them to do - a little very light housekeeping (we had a weekly cleaning lady), laundry, prep a simple meal, etc. Finally he made the move to assisted living at my absolute insistence. What we both discovered is that he should have done it earlier as making friends, learning the new schedule, participating in activities would have been much easier. He has a private apartment - all his own furniture, can have a pet, overnight guests, come and go as he pleases, etc - just like in his home. There is a nurse on duty at all times, many LPNs and staff around, and they do a good job of keep track of the comings/goings of the residents. I am now able to call the front desk when he forgets to hang up the telephone after a phone call and ask them to go to his room and remind him to do that, instead of making the drive to his house to put the phone back on the hook.

Full-time in-home care may not actually be the best thing as there is no socializtion and can become very isolating. Assuming you find an assisted living in the neighborhood she can keep her old friends and make new ones. My father continues to attend his same church and outside activities with help from me and other friends, but now we aren't responsible for the constant needs when he was living in his house.

https://www.irs.gov/pub/irs-pdf/p1779.pdf

https://www.irs.gov/newsroom/understanding-employee-vs-contractor-designation

http://www.myhomepay.com/Answers/1099-and-Nanny-Tax

Each year, families across the country illegally classify their worker by providing a Form 1099 (Form 1099 is used to report money paid to an independent contractor). The IRS has ruled that - with few exceptions, such as some medical caregivers - household workers are employees of the family for whom they work. Attempting to classify them as an independent contractor by giving them a Form 1099 is considered tax evasion and does not absolve them of their household employer tax and legal obligations.

Of all the mistakes and problems we see, this one is always at or near the top of the list. The confusion stems from the IRS 20-point test to determine worker status. Many of the questions are ambiguous and/or subjective. Worse, a worker may appear to be an independent contractor on some of the questions and an employee on others. Which answers prevail?

Employee. If even one of the 20 answers points toward employee, she’s an employee. To save you the trouble of the test, the IRS has ruled in almost all cases that household workers should be classified as employees. Therefore, the family must handle all household employer tax and labor law obligations.

From Nextavenue.org;
Caring for a family member often takes a tremendous toll on the health and well-being of the caregiver. Research bears out that many caregivers neglect their own health while caring for their loved one. It fact, studies show that caregivers are at a much higher risk than others for diabetes, depression, stroke and other illnesses.

An oft-cited 1999 study found that caregivers have a 63 percent higher mortality rate than non-caregivers, and according to Stanford University, 40 percent of Alzheimer’s caregivers die from stress-related disorders before the patient dies.
—————————
Barron, Rosenberg, Mayoras and Mayoras P.C./ September 15, 2014;
70% of All Caregivers Over the Age of 70 Die First. (Before the people that they are taking care of.)

Why put them in asst living or memory care? Ask them what if I get sick or die & you are home? Remember 70% of caregivers get sick or die befor person they are carrying for. I have seen it happen twice & then kids say I don’t know how dad did it caring for mom.

I have. And do right now. I moved in with my mom and would do some of the overnight care. She's on hospice now...so we have 24 hour care. Two 12 hour shifts per day. Three 8-hour shifts is too much going on. If you can afford it, it's great. They help her, change her pull-ups, move her from bed into a wheelchair so she eats all her meals with me in the kitchen. Hospice comes whenever we need them to handle any medical issues. Hospice is free, part of medicare. They come and do baths 3x a week, RN whenever I want. They give you a hospital bed, oxygen...whatever you need...pull-ups wipes, lotion. If she was at memory care in a mixed living establishment ($7000 per month), she would still need some extra caregivers ($3000 per month). If you can find 2-3 caregivers to pay privately, it would be much cheaper. It's expensive. But it's a nice luxury. She's at home and happy. I can eat with her and watch TV and sleep next to her if I want (she has the hospital bed right next to her old bed.

We tried it but just couldn't keep reliable help. And, it cost $240 a day! It was very wearing on the family. She subsequently moved into an ALF and was very happy there.

When my mom was alive, she did not want to be in a nursing home as her dad was. I stayed and took care of her part-time and hired someone to come in and sit with her, getting her something to eat and just providing help when she needed to go to the bathroom or get up. My dad still still lived in the house but was unable to help her get up or change clothes. The help releaved me and took pressure off.
We just hired individuals. I did interviews and background checks.

Best of luck to you.

Ideally, we all want to stay in our homes until the very end, but at some point that's just not an option due to finances, physical limitations and the ability/willingness for family members to step in when a paid caregivers call off. It becomes dangerous for the loved one. We're outside Chicago, in Northwest Indiana and the costs for 24/7 in-home care is about $500/day for someone at $20/hour, which is pretty much the minimum. This is not skilled care, just a companion, maybe a CNA. That's on top of the regular household expenses - utilities, food, etc. Plus the loved one still needs to keep up with doctor appointments, errands, etc. Unless you're a millionaire, it just becomes too expensive, time consuming and an enormous mound of paperwork. There are residential homes where there are 5-6 elderly together. The ones I looked at were very good, but not suitable for my mom as she is totally immobile, has severe dementia, numerous health issues. I opted for a very nice facility - assisted living first, now in the nursing home section. Be sure they have medicaid beds when the time comes as whatever savings your loved one diminishes so fast it'll make your head spin. Every situation is different. My advice is to go with your gut. There are no easy decisions.

I had help come in when I was caring for my Husband.
I had someone in at 9 am and they were here until 4.
But I got my husband up, got him into the shower, dressed and breakfast before 9 and I got dinner ready and got him into bed.
When he became less mobile I used/ we used a Sit-to-Stand to help change him then later a Hoyer lift.
The equipment I got was the only way I could have done what I did. I have the VA and Hospice to thank for equipment and supplies but I also have to thank my sweet Husband that made caring for him so easy!

As much as you mom digs in her heels is she fully aware of your limitations? Does she know that you can not take care of all of her needs?
The best case scenario is to find a place now (one that will later accept medicaid), a place that she will be comfortable (happy?) and move in while she can make adjustments. If funds begin to run low the application for medicaid will possibly take a while but most places will keep a resident that has been private pay when they have to apply for medicaid.
I think if you compare costs of a live in or 24/7 care an Assisted Living would be less expensive and she would have the ability to contact someone for help. Obviously the more help she needs the cost will increase.

Round the clock care would require placing your Mom somewhere. She needs to know this. Take her to facilities in your area and let her see for herself how being in an assisted living or nursing home may help her. Then remind her that if she does do round the clock care, the most efficient way would be in a facility. The sad reality is when her money runs out, so does the home health care. Good luck.

We have tried both in-home care (24/7) and Assisted Living. We started with a relative who lived with Mom for a month and then had a former neighbor live with her for the next month. We paid them and provided R & B. Since this was the first time someone was at the house all the time, it was an eye opener. I mention this so you might be prepared if the same thing happens to you. We learned that there were things going on that we would not have known otherwise even though I was at the house multiple times during the week. It became clear very quickly that Mom could not live on her own. Positives for this type of arrangement: there were eyes on the situation all the time and help for all the things Mom needed including med management, she could stay in her home, and it was much more affordable than going through an agency. The downside was that I remained on-call 24/7 and it was very stressful on the caregivers so it only lasted two months. We then went with an agency for 12 hours a day and my brother stayed overnight. Positives were the same as having someone living there and Mom made new "friends". Negatives were the cost ($120,000/yr for 12 hrs per day), no coverage when someone called off and I was still on call 24/7. Then we tried Assisted Living which was much more affordable ($65,000/yr). Mom passed the assessment and moved into an apartment at the beginning of the year. She did not want to be there and fought it every day. After three weeks, she fell and has been in rehab since. We are now finding out that AL was not an appropriate level of care for her and she probably needs Memory Care. This was based on another, more detailed assessment, of her cognitive function. So if you also decide to try an alternative living arrangement, please be sure your Mom will be placed appropriately and you won't have to move her more than once.

After trying out all these different options, we feel Mom is safest in a controlled living environment with 24/7 staff available. I wouldn't say she's "thriving" in rehab but she is more engaged and like herself. She likes that there are people around all the time and she can get help if she needs it. She still wants to go home, though, but would quickly run out of money and end up at a facility eventually anyway. At that point, she may not be able to make friends and it would be even harder on her. It's an awful, gut wrenching decision to make and I feel for you being in this position. I hope you are able to find a good solution for you both and possibly find some comfort in knowing that you are not alone!

I have read recently that quality in home 24 hr care ends up being more expensive than assisted living costs. Probably depends on location.

I am a Caregiver. Two clients I work with have 24 hour care. You actually gain on Mothers care 24 hours a day. Someone is with her at all times. Literally anything she needs someone is there for her. In a care center they are left to fend for them selves hours at a time. The fall risk is so much greater. i have worked in both types of this care and I would chose Home Care in a Heart Beat.

Dying in your home with all your treasures around you is very peaceful. Warm feeling of your life ending is so much easier. This is also easier on the family and friends. When you look at a care center, it can be very cold & frightening. When remove the elderly from the comforts of home it brings death very quickly. They seem to give up the fight.

Cost wise is also something to consider. Care units are very expensive. If the saving of funds is not there to support the cost... A very low end care unit is were she will be. I must be brutally honest, I would keep a loved one home before I ever placed them there. We as a country are headed into a huge health care crisis. Worse then it all ready is, especially for seniors. Many Health Insurance Companies are starting to recognize the cost for care units and helping to pay for in home care.

This is never an easy thing to deal with. I wish you all the best as my heart goes out to you. God Bless

Have you considered an Assisted Living community instead? In addition receiving the care she needs your mother would also have socialization. Having her meals with other residents, participating in programs and activities, etc.

Home care can be iffy. As others have mentioned you need to be prepared to scramble when someone calls in at the last minute. To me the management of multiple home care staff would be very stressful.