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Since beginning the search for home care, I've realized that many of the common descriptions as well as names of agencies and companies are often confusing, as sometimes are their roles. I'm interested in some feedback, suggestions, as well as comments and suggestions on making these situations work well.

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1. Home health agencies/companies that provide post-rehab services, including nursing, PT, OT, ST and personal care, apparently are affiliating with specific medic alert and visiting physicians companies, and won't hesitate to recommend to the client that these companies be used.

I've already been "around the block" with 2 companies on this so far, one home health care for rehab and another for private duty work.

2. Private duty agencies/companies, sometimes have a similar policy. I had thought of Private Duty in terms of a single nurse, providing limited skilled nursing care. I've heard of retired nurses who sometimes perform these tasks.

But I'm also learning "private duty" sometimes has nothing to do with home health care. From over a dozen calls I've made while looking for one, I've found they range from a man who "has a dozen girls" available (I don't want a harem, I want home help) to companies that only do light housework and not much more. The latter does not train its staff, and subcontracts with other private duty agencies if it doesn't have staff available.

The only "health" related components are assistance with medicine; for my dysphagia pureeing needs, the assessment nurse said staff would have to be trained.

A more concerning factor is that this particular agency hires homemakers and mothers, whose children's school schedules are factored into their availability. These are part time workers, not long term dedicated professionals. (It's not my intent to criticize mothers or homemakers, but merely to emphasize they're looking for "fill-in" jobs only.)

Yet another private duty company is at the other end of the spectrum, training its staff in regular programs and specific health applications. While this company doesn't provide any nursing, it does have staff who have been trained in dementia care, others who are familiar with dysphagia care, and more. This is what I wanted. But not all are like this.

These two agencies offer care at different ends of the spectrum.

With a particular agency which is mentioned and recommended here frequently, a "concierge" service package is available, by which they will, and WANT to, provide anything from in home care to home repair and even some yard work. The rates for home repair are in at least one area greater than the rate for an independent handyman. From their description, they're also seguing into turnkey operations for "home care."

So what does private duty really mean?

For one agency it's not much more than I could get through Molly Maid type agencies. For another, it's closer to skilled home health care.

What are other posters' experiences with private duty companies?

3. I thought hospice care was palliative care, until learning recently that Medicare is partially funding Palliative Care as a program SEPARATE from hospice. PC serves people with chronic medical conditions, but not terminal conditions.

It ranges from care similar to that of skilled home nursing care, to merely telephone advice from an alleged staff of skilled medical professionals.

Treatment is still provided, but palliative care offers more home visit solutions - i.e., as an option for quick diagnosis and treatment as opposed to going to Urgent Care or the ER. In my research, I learned that people can be on Palliative Care for years. An example might be someone with chronic lung disease, someone with neurodegenerative diseases.

Frequency of visits depends specifically on medical conditions.

The patients cannot have a terminal diagnosis.

I've alternately been told that Medicare will pay for Palliative Care, told by someone else that it won't. Where, oh where is the truth on this care package??

4. Hospice, which does require a terminal diagnosis, as I understand, and doesn't offer treatment to cure illnesses.

Thoughts, comments, similar experiences?
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GardenArtist, I was quite pleased with the nationwide caregiving service that I had used. The caregivers would help Dad whenever he needed help being mobile. They would take Dad outside for short walks, and one caregiver would help Dad with trimming landscaping which she liked to do. They helped with meals, showers, took Dad to doctor appointments, did light housekeeping plus laundry.

I let Dad choose which of the caregivers he really liked, then I asked the Agency to see if those caregivers would be available for regular scheduling. I wanted Dad to have workers who would chat with him, have a similar background growing up, and who had a sense of humor. Dad liked the new set of ears to hear all of his stories :)

Yes, it was expensive, and the money was automatically taken out of my checking account to pay the monthly bill.... I would have used Dad's checking account but he rarely carried a high enough balance and trying to get him to sell some stock to have liquid funds wasn't easy. Never had any problems with the billing. Dad would eventually reimburse me.

I wasn't fussy about meals for Dad as he is easy to feed. One caregiver was pretty much zapping TV dinners which Dad didn't mind at all. Another caregiver would cook from scratch, even bringing over left overs from home which Dad really liked... also home made cookies. I know your parent need a special diet, so that might be trickier unless you find a caregiver who is familiar with pureed food.

Good luck on your search.
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FF, thanks for sharing your experience, which seems to have been very positive.

I believe your caregivers were private duty, with emphasis on care issues rather than medical issues?

Do you think they'd like a vacation in Michigan? We even have a lake within walking distance!
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GardenArtist, one caregiver was certified to deal with medicine. She would fill Dad's pill container, and even call the pharmacy when Dad's pills were running low. That was a great help as in the past before the caregivers, Dad use to wait until he ran out of pills and a couple days later mentioned he needed some.... [sigh].

I remember when Dad had an urinary tract infection, the weekday daily caregiver didn't realize it when Dad was mentioning he saw ants on the wall and in his food. Dad was a joker and I think she thought he was pulling her leg. The weekend caregiver knew right a way something was amiss because she had taken care of her own parents both of whom had dementia. Her first thought was UTI.

The lake sounds wonderful :))
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