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Thank you everyone...that gives me a very good start. It is so hard to even imagine what a situation will be like unless you have lived it...so I appreciate that you took the time to share your experiences with me.
I recently got a little taste of what an institution would be like if Mom ever need one. She went to rehab for 2 weeks - but I found that I was going out there nearly every day for one thing or another. As others have mentioned about facilities: there is absolutely no privacy...doors are left wide open and really anyone from the outside could walk right in. They put her in adult diapers..."just in case." This was a highly rated facility and overall I thought she received good care, but I know that it would make me sad seeing her "cooped up" in one room all day, waiting for someone to come and get her - such a loss of dignity. The staff members were great for the most part, but mistakes were made and I am glad that I was over there a lot.
I began to think that in-home care offers more individualized care, even though you are paying out of pocket for the services. I realize that it takes a great deal of time and planning, but it can't be worse than running over to the rehab all the time. And I worried about her every minute she was there.
So, when the time comes, I am going to try in-home care. With everyone's help here, I hope I can figure things out. thanks again...Lilli
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We use in-home caregivers for my mother who is 90 and has advanced dementia. We spend a great deal of our income on having someone come in at nights to work a 10 hour shift, 7 days a week. I work and my daughter who lives here to help out, takes care of her 4 to 5 days a week during the daytime. I fill in the rest of the time.
Other pointers I'd give are -
* Be prepared to have to hire and let go of a number of people. It's hard into is finding good, reliable aides, whose personality will mesh into your household. You should look for someone who loves the elderly and understands your mother's health issues. Some people expect to just "sit" with the elder, or "sleep" while Mom sleeps. The problem is that she doesn't sleep all night or for long periods of time, and she wants to get out of bed and look around the house!
* Give them a specific set of duties from the start.
* Make sure that you are very clear about the rate of pay, date of pay, and anything that could cause their pay to be docked.
* Be sure that you have several people you can call if the aide gets sick or calls off for an emergency.
* Be prepared to lose some privacy. It was difficult for me to adjust having people in the house all the time. Never leave valuables around, or anything that you don't want others to see.

I hope that this helps some.
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My folks live 1/2 mile away, and Dad had been caring for Mom who has dementia. Gradually her needs have expanded as his abilities have diminished, and now we have 3 caregivers. One works 8-12 Mon-fri, gets her up, feeds her breakfast, back to bed for napping, bathing, laundry, up for lunch, back to bed. She naps til 5 when caregiver #2 comes to get her up for supper, evening tv or whatever, and back to bed by 8:30. Weekends, we have another who is willing to work both shifts for both days. They communicate with each other in a book (how did she eat, was she awake, BMs, etc) We pay unemployment, social security and medicare. We needed a fed employer ID and state unemployment #. Also, be careful because if you have 4 people, you have to pay workmen's comp. We pay around $12 an hour. If you go through an agency, you don't have to worry about any of that, and you will pay more, but they (theoretically) can send a replacement if someone is sick. What we are doing works pretty well for now, since Dad is there and can be watchful in the hours between caregivers. Mom gets great care, and the aides love her. We heard about our workers through friends, always nerve-wracking to think of finding a new one. Facilities are understaffed and can compare to home care. I know I will never regret the time we were able to spend.
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I have been using in home caregivers. I live with my Mom and was working full time so had a caregiver about 45 hrs a week. She was great. I then tried a live 'in but at that point I got laid off from my job , so let her go. If you can afford it, I think it is a great way to go. I found my caregivers on Craigslist. Interviewed them, got references. There are a lot of qualified people wanting to work private duty instead of in a nursing home. The thing that has stressed me out is the cost. We were paying 15 per hr. Adult day was OK for a while, but Mom likes a one on one a lot better. I just went for a long walk while the caregiver gave mom her shower.
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