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

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 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.

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.

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!

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

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.

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.

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.

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 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!

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!”.

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.

Opps

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.

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!

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.