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Assuming LO needs basic ADL requirements but can feed self and has minimal professional nursing needs, seems like everyone is saying that it is very hard to take care of LO at home vs having them in a ASL/nursing home. My understanding is a ASL/nursing home provides 2-3 hours of care, 3 meals a day, and medication dispensing. This sounds doable for in-home care if a family member had the time (no other job). Is it that once the LO is at home they demand more care or that the family member gives them much more care than they were getting at an assisted living or nursing home ?

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Correct, most people jump through hoops when taking care of a loved one.

The loved one expects the caregiver to jump and ask how high when they are trained this way.

Implementing boundaries from the beginning could change this dynamic but, most people forget the honeymoon period trains the elder you are ALWAYS available.

My dad thought he had a personal servant and would get angry when I said no or I'm busy. He would never treat someone else like this, so facility placement was required for everyone's well-being.
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At home care could be the best but the home has to run like a nursing facility. Almost identical services have to provided on time. Nursing homes not transparent I believe do not pay their unskilled workers well enough and not staffed to care for the number of patients they have so a staff have too many patients to care for Each day. I’ve witnessed NH that I believed did not have enough funding to maintain the level of quality of social, medical, therapies, dental, vision, homelike care, treatment, medications, equipment repairs and supplies. The staff stole most of my family members possessions I think to compensate for not being paid enough. To my dismay NH are ranked better by Govmt agencies when they do not send residents to emergency rooms in emergencies. Google AHCA inspections of any NH. It’s harder for families to navigate. The problem with HOMECARE was not just living up to ability to learn all about caregiving but something more strange I learned was to be aware of the power of home health workers, health plan providers and case managers because they all work for the health plan. They have an enormous amount of influence with government agencies and could turn on you after you align with them providing home care to your relative. Keep copies of all of the paperwork from all of them to cover yourself. They possess an vast amount of knowledge but won’t always share it with you. But I’ve read most patients only survive on average two years in a NH. Medicare or Medicaid will pay a family member to care for their family up to $400 a week in my case for forty hours I had 17 more hours to hire help for me but that may have been a Medicaid Waiver. Medication nurses also came into the home twice a day seven days a week and most therapies could be done at home therapy if needed. Must pass a background check. Again you go through the provider or case manager for that. They visit your home several times a year and have a lot of knowledge we don’t have. Can be problematic please don’t underestimate. Currently My County has a senior or elderly services department that provides caregiver 3 times a week for 2 hours. Great oversight and training of their workers. But we currently require at least twenty hours more to relieve family members from 24 hour duty that live in the home. So we became proficient over time, POA as well as Medical proxy forms are paramount to your success without those forms it’s much much more problematic. Hospitals may give you a temporary medical proxy form to fill out but no place else will. Social security has to be contacted about being your Moms representative payee. I’m retired so I can make my own schedule and rest some days when my patient rests. It’s more beneficial since I provide nutrtious food so I also eat nutritiously and maintain a healthy weight and reveresed my Moms diabetes and reversed her excessive weight gain. We also have a dinner cook. I worked outside the home for almost 45 years. I can give my relatives the same exceptional service I gave my other employers. Have my relatives gotten better. Yes. The one in the broke nursing home died with both legs cut off after I complained. I had no POA. I couldn’t get her out and no govmt agency helped me. The other two relatives I’m holding onto and vowed to never get discouraged again.
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It's that those 2-3 hours of care, 3 meals a day, and medication dispensing (+ laundry, admin, socialisation and recreation, supplies and logistics) are spread over fifteen hours a day, seven days a week, and there is only one of you. There is nobody else. You are never off duty. And, because you aren't trained and you don't have access to facilities grade equipment, let alone a 2:1 partner for moving and handling tasks, or back-up services like laundry and catering, everything takes you a lot longer.

In a facility, you put the used bedlinen, sheets and so on in the laundry bin and they magically reappear - okay, sometimes they magically disappear forever, but nonetheless - in the supplies. At home, they do not make their own way into the washer, the dryer, or back into the cupboard, and nor does anyone else supply the detergent or the disinfectant or any of the other things you're likely to run out of at the least convenient moment.

In a facility, you serve the meal to the person who can eat independently, and then you take the tray away. At home, you provide the food, you prepare it, you serve it, you clear away, you do the dishes, dispose of the leftovers, and start again 3-4 hours later.

Just think it through. If you have no means of delegating any of the tasks involved, the reality is that before too long you will be one tired and burned-out bunny.
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MargaretMcKen Jul 2022
CM’s great reply doesn’t add on the ‘behavioral issues’ that are so common. Elders often become very demanding and critical of care from their principal family carer. Much less so from ‘staff’, and staff are much less upset by the behaviors that so often come with the job.

For many of our posters, the anger and criticisms are as hard to cope with as the actual caregiving.
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Depends so much on WHAT task requires help, HOW often & HOW urgent it is.

"Assuming LO needs basic ADL requirements.."

Say Mr A needs a little help - to shave & tie his shoes, put his laundry on to wash, take the rubbish out, put any heavy grocery items into smaller containers. He has good continance, has good balance & walks carefully with his stick. He has an alarm button & also keeps his phone on him. Used the alarm once when he slipped in the kitchen.

Say Mrs B needs a little help - she has become increasingly incontinent (both bladder & bowel at times). She sometimes cannot get to the bathroom in time & cannot fix up any accidents that happen on her own. Sometimes she gets fatigued & cannot get out of her chair. Once had to spend the whole night in her chair as could not get up. Was cold with just a knee rug & had sore stiff joints by morning. Found by family after not answering her phone for hours. Wears an alarm button but forgot to press it.

Mr A's needs can be bunched together & be met in one visit: 1 x every morning, or with easier shoes, 2 x week - whatever is suitable.

Mrs B's needs are not really any higher or more frequent. They are more *intermittent*. They happen when they happen, not able to by bunched into one visit.

This is where AL may benefit over home care. While Mr A may well do very well at home for quite a long time, Mrs B will be at higher risk - of skin problems (while awaiting help to change pants/clothes). Risk of falls (fatigue/stiffness). Risk of not getting help promply (not using alarm button).

Anyway, to me that is a big factor: Intermittent & random vs planned & known needs.
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My mother had lived independently by herself, even after a significant stroke, until she broke her hip in a catastrophic fall.

She went from needing no services to needing 24/7 services.

Besides her legitimate needs she was a tiny woman whose response to surgery was devastating, and literally became totally dependent overnight.

The only alternative for her was a SNF, because she needed assistance for everything but eating. Not incontinent but needing full assistance for toileting, able to choose what to wear but not get into her clothes, needed to be surveilled constantly because she’d forgotten that she couldn’t leave her bed or chair safely without supervision.

I’d left my job when she’d fallen. She required 24/7 care from the minute she’d broken her hip.

I provided what she needed, lived with 4 hours of interrupted sleep a day, and gained 60 pounds.

Her SNF gave us both back some semblance of normal life.
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A facility offers departments of people to attend to senior needs. The people who do the laundry aren’t the same ones doing building maintenance or driving or making or serving food. Whereas in the home environment, it’s usually up to one or two people to do most of the above.
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An AL is very different from LTC. ALs are residences that offer limited help. With my Mom she could still feed herself and get around but she needed help bathing, dressing, toileting and getting to her meals. Her AL combined their residents but if they had separated them she would have been in memory care. Once they need skilled care, they are beyond what an AL or MC staff can do. Now they need LTC.

My Mom could have lived with us till she passed but my house is not conducive to someone who suffers from Dementia. I live in a split level with 3 sets of stairs. If she could have still been involved with her Church, read her books and took care of herself no problem. But she was too much for me and she did better in the AL.
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How is camp different for a parent than keeping their child home for the summer? At camp, the counselors look after the child, feed them, entertain them, see to their needs while the parents get to enjoy their summer doing what they want to do instead of looking after their children. The children are also socialized in summer camp with a bunch of peers their own age, something a parent cannot give them in a home environment.

The same exact thing applies to elders living at home vs. living in a managed care environment.

What's the Big Deal about caring for an elder all day long at home if you don't have a job outside the home vs. having them cared FOR in a managed care setting? The difference between night and day. When they're in your home, your home is not your own. They're living there and usurping YOUR SPACE, first of all. Then, if they require care, can YOU leave the home to go out by yourself? Are they capable of staying home alone without supervision? In managed care, they are but a string pull away from help on a 24/7 basis. Not at home though. If you're gone, they're all alone. The 'care' of 2-3 hours a day you mention and 3 meals a day entails so much MORE than 'just' that. How about the time it takes to COOK those 3 meals a day and to serve them? What about shopping for the food (not to mention THEIR specific food needs) to cook those meals? How about bathroom blowouts? The time it takes to clean them up and to clean up the elder who has them? Is that time taken into the 2-3 hours a day of caregiving you mention? What about the shower that needs to be given after said blowout and the pushback from the elder who doesn't want it? The 30 minutes of fighting about it beforehand?

The reality of 'what goes into at home caregiving' and what it SOUNDS LIKE goes into at home caregiving is mind boggling. Having an elder living inside of your home 24/7 means you are tied down to them and to that house 24/7 also.

There is no escape. And more importantly, there is no MENTAL escape; this elder is now embroiled in your mental landscape 24/7 and all of your thoughts are involved with their care & wellbeing, not just your own anymore.

Having that elder in managed care means you have your own home and your own life and can go visit said elder in their OWN autonomous space at YOUR convenience at any time. THAT is the main difference between managed care and home care.

It's like comparing sending your kid off to summer camp for the summer and having him home for that period of time. One gives you a whole bunch more freedom than the other b/c it puts the care & management of the other person onto others.

Don't get fooled by something that sounds so easy-peasy on paper and what it actually feels like in reality! Hands-on care 24/7 for an elder, who keeps on getting older, sicker & needier with time, is a very difficult thing that only SOUNDS like it won't be a big deal. Some people are cut out for it and find doing it, while others are not. The key is to know yourself and what you're in for having an elder living in your home. Because once they're living with you, it can often take an act of God to get them OUT. Reading the boards will show you that statement to be a fact.

Good luck!
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For my care of my mother, we did fine until mom required nearly 24 hour supervision (I could still get out in the yard or do a quick run to the school to pick up a child) and then the second big factor was my unability to transfer my mom to her wheelchair or into the car alone.

The first issue was resolved by getting mom enrolled into an adult day care 3 days a week which gave me blocks of time to shop and take care of appointments without worrying about mom.

When I had problems transferring mom into the car or into her walk-in tub, I got help from nearby family members. At first I just needed someone who could help moving the chair when we got mom into and out of the car. Then her grandson carried her to her bathtub. When she became basically bed bound because we needed a second person for a safe transfer into her chair, I knew it was time for MC. In our case, it was not the time required for her care, it was my inability to deliver the care she needed alone.
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