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My siblings and I are considering 24-hour in-home care for our parents, however, none of us will be living with them. Is it safe to have 24-hour caregivers (2 or 3 shifts) without another family member there to watch over them? Or is it safer for them to be in a nursing home? They are mostly bed-ridden and need help getting into their wheelchairs for a few hours a day. They are also in the early stages of dementia -- but only people who know them would recognize it. They have done better in healing from their health challenges while being at home and with each other, than when they were separated and in different rooms in the nursing rehab center.

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Louwms, yes we are similar! My husband, too, is reclusive, and I'm outgoing. I did a lot of traveling before his last decline and I'm hoping to again. He has gotten used to the caregiver and I've been experimenting recently with having her do overnights so hoping to ease back into traveling! One thing I have found is that consistency is so important. I'm hoping caregiver and I will become interchangeable soon! It took me a year to find someone I could really trust but once I did, it has been so freeing. I think I've said before, I have cameras so I can keep an eye on things. I sleep in the same room with him and lock the bedroom door so he can't wander at night. And, his anti anxiety meds, along with melatonin, help him sleep through the night. Like everyone else here, we just keep truckin one day at a time.
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Jazzy2 I'm similar, 70 with 82 spouse, dementia (Parkinson's probably) We are trying home helpers and will try day stays nearby. We do plan to use one week respite stays occasionally for my sake. He's reclusive, I'm outgoing. Tough making these changes!
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Nursing home over in home care with an agency. Not even close.
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jeannegibbs

to finish what I wanted to say, the one facility my mom was at, medications was separate (and expensive)

Commenting on your post about having people around to look out for residents, this same facility, a man died, because he could not breathe. There was an STNA on duty but he did not know what to do. He tried to track down the nurse on duty, but it took a while. It was so bad, that he even asked men who were at the facility to do a survey, if they could help. End result, nurse came, thought the man cou ld breathe better, no improvement, paramedics called tried to revive the man, took him to the hospital, he died.
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jeannegibbs

Just curious. Wher
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Thank you all for your answers. You have all been very helpful. I feel so blessed to have a community, like this, which I can turn to for help. God bless you all!
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I also have a camera focused on the room where I keep valuables. Caregivers have been told not to go in there. If anyone ever does, the system will alert me and I can call and ask if I can help. I've never had problems with agency but private care is a different story.
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I have cameras in my home to monitor my husbands care when I'm not at home. I also have assistance from hospice in addition to the daily caregiver.
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There are benefits to having someone come in 24/7 to care for your parents.
There are also benefits to placing them in a facility, assisted living or if they need medical care a "nursing home"
If you go the route of having someone care for them at home I suggest that you get an agency.
The people are bonded and there is the assurance that if someone is ill they can call for a replacement. And if there are problems you can always ask the agency to send someone else.
The benefit also of in home care is that they are comfortable.
The benefit of a facility is that there is someone 24/7 and a full staff.

You might also want to contact Hospice to determine if they are both Hospice qualified. This will also get you a nurse into the house once a week as well as a CNA for both at least 2 maybe 3 times a week and you will also have supplies provided as well as any equipment that is needed to help.

If you decide to have someone come into the house get a safe to place valuables in or better yet remove them from the house.
And now would be a good time to disperse the items that are in the house that will go to you or the siblings. This may upset them but just tell them that you are taking them for safekeeping. Sell what is not needed.
When and if they have to be moved to a facility for more care it will be easier to sell the house.
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What do your parents say? I am a 72 year old taking care of my 80 year old husband with advanced Parkinsons and dementia. My preference when the time comes is to go to AL. I've always been very social and like all the activities. My husband, on the other hand, is an introvert We have friends who still visit him. I've tried taking him to day care but he hates it. He asked me to promise to let him die at home like his father before him and grandfather before him. I have an assistant 6 hours a day who is a lifesaver. She is from an agency. I've had bad experiences with outside help. I just think it's such an individual matter. There are pluses and minuses to both. Go with what makes them happiest. And, for sure, do not split them up. They have each other. That's more important than anything, even health and safety.
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Just got another text from the care agency and the overnight sitter has cancelled - I'm already undressed for bed myself
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My care agency sent me a text at noon today saying caregiver cancelled her afternoon shift - they weren't able to find a replacement
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I know someone in her 90s who has 24 hour self pay aides from an agency. She is wheelchair bound due to a stroke several years ago. No problems
with the aides. She is of sound mind and not planning on going anywhere else. The city van picks her up weekly to take her out to get her hair done. Friends and neighbors help by running errands and her pastor stops by. Not too bad.
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How are they currently being cared for?

A family friend who is soon to be 96 has three women living with her on a rotating basis and her children visit weekly to do grocery shopping etc
She has a visiting nurse and a visiting dr after every few months and a woman comes to home to do her hair - she doesn't leave the house as she's wheelchair bound with mild dementia
Her daughter monitors the family room with a nest camera and has witnessed abuse and theft by other caregivers

I have used agency hired caregivers for 12 hours a day for a year both at home and now at memory care - there are times when there's a shift that they cannot staff and sending a brand new person is almost a waste of money if mom doesn't accept them

There are many different types of facilities and levels of care - if you have the luxury of a little time then try to make an informed decision

I chose memory care over a nursing home for mom in order to give her a better quality of life - it's private pay and tremendously expensive with private aides -
I would rather have her at home but I work long hours and she didn't like strangers in the home

Let us know what you find and how it works out
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My mom's experience at the NH is very much as Jeanne describes.

At this time, my is self pay. When her funds run out, she will be a Medicaid patient. Medicare covers the doctorrs who see her "in house" and her medications are covered, as they were at home.

My mom has a variety of activities everyday, some she goes to, some not. She mostly enjoys people watching.

I think this placement is vastly superior to being at home with hired caregivers.
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Why do you ask, zythrr? Medicare paid for the things they would usually pay for, and Medicaid picked up the rest. There was no cost to us or to Mother for any of her drugs.

My mother sat in front of a television set most of the time when she was home. In the NH she hardly watched it. Someone always came and said, "It is time for the sing-along now. Shall I push you down there?" and off she went with them. All of the residents were given the opportunity to participate in any activities they wanted to, but many of them declined.

At first my mother was very restless at night. They'd get her in her wheelchair and bring her down to the nurses station and ask her if she would fold some towels for them. Yes, she would. And the repetitive action of folding and smoothing the towels was soothing to her and she settled down. They had a lot of experience with most of the behaviors of dementia and some good ways of dealing with them.
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KThomas

Be forewarned if your parents need any medication, you or they will be paying for it. NH/AL contract out for this service, the costs adds up quickly, especially if they take several medications.

Activities sure, though the bulk of the time, especially if a NH, they would probably be gathered around the nurses station (easier to keep an eye on) watching tv, until time to eat.
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jeannegibbs

Did Medicare pick up the costs or was this self pay?
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In addition to the nurses and doctor Pam mentioned, and the entertainment I've mentioned, it was great that so many services came to my mother in the NH. A podiatrist came around and clipped her toenails and checked her feet periodically. If there were any symptoms they checked for a uti. A couple of times physical therapy got involved to make sure her wheelchair fit her well and to go through some basic arm exercises. Mother absolutely loved the fact that the beauty parlor was right in her building complex. She didn't even have to go outside! There weren't hearing and vision doctors on staff, but they came by periodically and saw the residents that needed them.
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I agree with freqflyer. Also, the home maintenance, errands, getting supplies, etc. Endless tasks to maintain a home and none of the fun activities that a good senior living offers.

I took care of mom and dad in their home with shifts of nurses for a few years and recently placed them. Mom loves it! I was scared to move her, but she is much happier and gained weight in the first month. She was so thin and frail at home. She enjoys the menu at the "Place" as she calls it.

Dad is at a nearby Skilled Nursing Rehab and we arrange for mom to visit him there weekly. We were unable to keep them together because their needs are so different.
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kthomas, when my Dad needed more care, I hired caregivers from a professional Agency as the Agency was licensed, bonded, insured, and had workman's comp for their employees. We had 24 hour care... the overnight person had to stay awake throughout her 11 to 7 shift. If someone was unable to come in for their shift, then the Agency will send someone else to fill in.

Now, the cost was very expensive... good grief, it was $20,000 a month, yes a month. With Agencies, they would probably charge a bit more for a caregiver to take care of two people within the same household. That's a lot of work, getting your parents up in the morning, bathed, dressed, and trying to lift them into their wheelchairs, making meals, getting them ready for night. The Agency might rotate a lot of caregivers so that those on the 3 shifts are burnt out.

My Dad use to leave money on his desk or dresser. Never was one thing out of line or taken.

Dad eventually moved into senior living and he loved it there, he wished he would have moved there sooner. The place was built to look like a hotel. The cost was half the price of staying at home with full time caregivers. It would have been less, but he wanted his morning Agency Caregiver to be there when he work up in the mornings, so we arranged for her to work 4-6 hours in the morning. It give Dad a routine.

Now, in senior living [Assisted Living or a Nursing Home], there wouldn't be anyone sitting with your parents all day, an Aide would come in to help your folks get ready in the morning, give them their baths, take them to the dining room, then back to their room, check on them during the day. Maybe physical therapy would be ordered. Most senior living facilities have a nurse on staff. Even in the evenings and on weekends.

Most Assisted Living/Memory Care facilities are locked in the evenings, so that residents won't wander out. Make sure there is a night crew available to help.
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Thomas, agencies vet their employees, so if you go with a good, reputable agency, you have a better chance of minimizing any exploitation.

As to advantages, some people just don't want to leave their homes, and it's too traumatic for them. Family can work with agency help to provide entertainment for their parents, and are in a good position to do so b/c they know their parents.

On the other hand, some people may prefer being around a lot of other people, even if they aren't family, and having entertainment provided for them.

So much depends on the individual person.

I think you're wise to be addressing these issues now.
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The more I think of it, the more the idea of one person caring for two people with dementia and mobility impairments just isn't likely to be feasible as the dementia progresses. It is good that it would be in shifts so that each person can be well rested. But really, that is a daunting job.

My aunt stayed in her own home as long as possible. She had 5 women covering the 21 shifts a week -- all of them known to my aunt and members of her small town community. My cousin lived the next town over but traveled a lot. It was very stressful when one of the fine women got sick at the last moment or had to change their schedule for any reason. Cousin had to somehow figure out how to fill the gaps because her mother's dementia was such that she absolutely could not be left alone. Eventually Aunt moved into the community health center, at a nursing home level of care.

Who will be in charge of seeing the your parents have continuous coverage? Yes, and agency is supposed to take care of that, and send a substitute when the regular staff can't make it. But I can tell you from experience that doesn't always happen. Then what?
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Thank you both for your answers. Both are very helpful. Yes, my concern about safety was them being taken advantage of or theft.
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The advantage of a care facility is that there are always multiple staff people on duty. If something happens out of the ordinary extra help is there immediately. If it becomes difficult for them to get out of bed, the care center will have equipment to assist with that. There will be activities available to watch or participate in. There will probably be regular live entertainment. Mom and Dad can be wheeled in to listen to the accordion player, for example. And there will other people their age to talk to at meals.

I can understand the desire to keep them together. Discuss the option of sharing a room in any care center you might consider.

If a care center is in their future, getting used to it now, while their dementia is in the early stage might be easier on them than waiting until their care needs really exceed what one person can be expected to handle.

You parents are very lucky that 24 hour in-home care is financially feasible for them. Whether it is the best option is a different question.

I'm not sure what you mean about "safe" -- accidents can happen anywhere. Are you thinking of theft or being taken advantage of?
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Safer in a nursing home, because there will be nurses there and an MD on the staff. Talk this over with their doctor as to whether they need a PCA, HHA or higher certification of care. Costs increase dramatically when you need CNA or LPN care.
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