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Old 01-19-2015, 12:17 AM   #1
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Nurse or home health aide?

I have no idea where to ask this question, so I am trying here. Help! If you are squeamish, bail out now!

DS is now 25. Down syndrome, Autism, not verbal except for some single words. Unfortunately, he has his BMs over night in his sleep. (he does not urinate, just poop). This makes it just about impossible for him to ever be away from either me or DH in the mornings. I do not not expect his siblings to deal with this (all adults now too). He does not have accidents during the day (except at WDW! Literally the only place he does. Which is another thread).

I need to be away with him for 4-5 days this summer. Most of the time, he will be in his all day adult program (he is bussed), and home with one of his 3 siblings or a sitter. He is generally easy to watch, but needs supervision.

So I am more or less able to get this figured out, except for the mornings. Who do I need to help me out with this? Do I need a nurse from an agency? Or more of a home health aide? And have her come in a couple of times while I'm home, to get the hang of the routine? Wake him up, clean him up, shower, dress, give breakfast, and put him on the bus at 8:30 or so. It is 7-9 am type thing, or less.

I know this sounds like a thing some of you would never do, but I am with him in the morning 365 days a year, usually. DH and I can never go away unless he is with us. This trip was planned before DH got a new job in Wash DC (we live in NJ). Don't judge me..... if I can figure this out, maybe we can go away for a weekend here and there.

Thanks for any advice.
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Old 01-19-2015, 08:02 AM   #2
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I suggest contacting your local Home Health Agency and posing this exact question. I would think a home health aide could handle it, as it isn't really "medical" in nature that would required skilled nursing. Many home health aides assist with personal care such as bathing; I'm sure toileting issues aren't the most pleasant or preferred part of the job but they likely do it for those with need.

Good luck and enjoy your trip!
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Old 01-19-2015, 11:18 AM   #3
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Thanks, I was looking online after I posted this and I think our local visiting nurse agency is where I will start. They also employ home health aides.

The job is not pleasant, but DS is, thank goodness. He is happy, laughing, compliant, etc not combative and difficult. That will make it easier for the home health aide. I am very lucky in that regard.

It's so difficult, I always knew it would come to this, needing help caring for him, someday. All of a sudden, he is 25, I am 55, and that time is approaching. (this is just a short term thing, for now, of course)
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Old 01-20-2015, 11:00 PM   #4
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Different situation, but we have a home health aide for my grandmother who lives with us.

A couple of notes: the home health aide does assist in toileting. For the most part, my grandmother can still do this independently, but she does wet the bed or have BM accidents from time to time and the aide does clean her up. She bathes her and does her laundry. So, yes, this can be part of the job description.

A nurse is SO much more expensive than a HHA. I think it's $95 hour vs. $28! I would only look for a nurse for true medical need which your need is not, based on your description. (Costs vary widely by region. We were paying $18 hour when she and my grandfather were in FL).

The agency that we use requires a 5 hour minimum per day. (The is no minimum on the number of days, just the number of hours per day.)

Our HHA has been a godsend. I wish you luck.
me DH DS19 DS15 DD11 Zeke Coco

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Old 01-22-2015, 03:37 AM   #5
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You will probably need a visit first from an RN to do an assessment and care plan before another worker can be assigned to care for him.

A Home Health Aide, Certified Nursing Assistant or Personal Care Attendent would do the actual work. But, they need to be directed/supervised by an RN; the RN does not have to be physically there supervising them.

If he is getting services thru your county, check with his Social Worker or Case Manager. There may be some Respite Care available that you can take advantage of. Everyone needs some respite at times - that's what they are set up for!

Good luck
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Old 01-22-2015, 03:22 PM   #6
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Originally Posted by PatMcDuck View Post
I know this sounds like a thing some of you would never do, but I am with him in the morning 365 days a year, usually. DH and I can never go away unless he is with us. This trip was planned before DH got a new job in Wash DC (we live in NJ). Don't judge me..... if I can figure this out, maybe we can go away for a weekend here and there.

Thanks for any advice.

I think that everyone needs a break at some time or another. I have three young kids and I can't imagine not being able to get away for a weekend here or there. I think that you are wise to make your marriage a priority in addition to your son, especially when you are also focused on making sure that your son has the care that he needs and is with his siblings too so he is comfortable.

That being said, I would look to the county and ask them what type of respite services they have. I don't know of anyone who has used it for a child with disabilities, but I do know of people who used it for foster children. It will vary widely from place to place though in what services are offered/price point. Even if they don't offer anything that you can use, they will know of places that you can use and which agencies have the best reputations.

My sister is a visiting nurse and she does not visit the homes of patients that do not need actual medical care. There are some LPNs and nurses aids where she works that may visit patients without actual medical needs though. Again, even if the agency you call doesn't do the type of services you need, I would ask for a recommendation from them of who does - I'm sure they get asked questions like that all of the time and need places to refer people to when they aren't able to help.
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Old 01-22-2015, 11:58 PM   #7
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Does your son has a service coordinator/case manager? If he is in a day program, he should have someone who manages his case. This is the person who should be helping you to figure this out. His day program should be able to make referrals to agencies who would be able to provide you with an aide in the mornings and whatever funding stream he gets his day program through should be able to fund it (Medicaid waiver, straight Medicaid, private insurance, State of New Jersey, etc.). Another possibility is an out of home respite program for a few days. But, that might be too disruptive for your son on such a short-term basis.

I have a son with Down syndrome who will be 25 in March. He sounds a lot like your son, except he is not at all toilet trained. We do not have a day program per se, because NYS has done away with new admissions to day hab and sheltered workshops, so you should count yourself very lucky.

Good luck in finding what you need.
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Old 01-23-2015, 02:38 PM   #8
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We are lucky to have DS in such a great day program. He even calls it "school", because it is in the same place where he went to school from age 11-21. They do so many things, and he has enough funding to go 5X a week, from 9-2:30, and he is bussed. He LOVES it. They do art, music, watch movies, exercise, go outside, trips to movies/pancake house or Wendys once a month/ shopping trips, etc. They also have many groups from the community come in like college sports teams, local DJs, senior singing groups. Some clients help with cooking lunch each day, Sean uses the computer, and more.

We want to move out of NJ but it is scary to think of pulling him out of his program.

Yes, there is some sort of respite care, good point. I have never used this, since he has siblings that I have always leaned on. But I will also explore that option. I will start soon to get this figured out by August.
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Old Yesterday, 10:07 PM   #9
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Our family lives in NJ as well. My mom lives with my handicapped brother who has Williams syndrome. My brother gets a home health aide for 4 hours a day for 6 days a week. They shower him, feed him and help with his daily needs. Don't worry about the diaper issue, they are used to some unpleasant tasks. My brother not too long ago, had a bad stomach and the bathroom got affected (sorry tmi), anyway, my mom was cleaning it when the home health aide arrived and she was right in there helping my mother clean it. Nurses/aides do these type of things all the time caring for people who can't care for themselves. My brother has 2 aides right now and my mother loves them, they are very caring sweet woman and are a blessing. Good luck. You deserve a break once in a while.
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