Need some ideas

Published

Specializes in OB/GYN, Peds, School Nurse, DD.

This isn't really a post asking for advice, I promise. I've got the medical part under control. It's the homecare that I'm struggling with. Here's the deal: My 15yo very mentally handicapped son fell and fractured his hip. He had it pinned yesterday. Now he's non-weight-bearing for 4-6 weeks. Keeping him entertained is going to be a real challenge. We have been home for about 4 hours and already he has tried to sneak out of the bed or the wheelchair 4 times. I literally have to be within a few feet of him at all times. Unfortunately, DH is ill with severe vertigo. In fact, HE was in the ER today for vomiting blood. So I'm pretty much on my own here until he recovers enough to stay upright for more than 3 minutes at a time.

Anybody out there have any suggestions for keeping this kid safe? I'm ready to put him in a restraint and it's not even been 1 day!. I'm afraid to go to sleep. In fact, I've put a little blow-up bed next to his and I PRAY that I hear him if he gets up. If he walks on this leg, it's going to be bad. And God help us if he falls and rebreaks it. We've already been interviewed by CPS once, with promises to come back and check us out more thoroughly(there is a past history of serious falls.) I'm going to make some calls tomorrow--we HAVE to get some extra help with this. DH is disabled himself and I just can't do this alone. I wish DS could go to a rehab facility where there would be more people to help us. Even if I had to spend every night there, at least there would be other people around to provide another set of eyes. And bathroom breaks.

Up Vote Up Vote ×
Specializes in PACU, OR.

You definitely need a full-time caregiver. Trouble is, it has to be someone your son's comfortable with. I'm presuming you don't have any unemployed relatives who can help you.

I'm also presuming you have a double-storey house; am I right? If so, you might need to think of selling it in the not-too-distant future and buying something on one level.

I would approach a local employment agency and ask them to recommend someone experienced in looking after children. Preferably not elderly, as your son is probably too strong for older people to handle.

I hope you find someone soon, and that your husband recovers quickly. My thoughts go out to you, it's a horrible situation to be in, with all the chaos of Christmas on top of everything.

Up Vote Up Vote ×

What does he really love to do most? What age level is he developmentally?

Is he able to play with any hand held video games? puzzles? books? stickers? hot wheels? an action figure? or stuffed animal?

Does he have any favorite movies? Maybe he could open a present every day, even if it's something really little. :giftbox::stocking::bell::hanukkah::tosanta:

I'll be praying you hear him, too, and also for your strength. :redpinkhe

Up Vote Up Vote ×
Specializes in MR/DD.

I was going to suggest an enclosed bed but it seems they are very difficult to find because many of them have been pulled from the market.

I saw one used for a 12 year old boy who was severely mentally retarded, blind and wheelchair bound.. he would often get out of his wheelchair and attempt to walk .. resulting in falls.. he also would get out of bed in the middle of the night.

his mother was able to get medicaid to fund an enclosed bed which was a regular bed with a net enclosure around it. (this was about 5 years ago)

the other suggestion I have Is to empty out a room and put a mattress on the floor, you can also get some foam mats for added safety, that way if he does get out of bed he will not have a long fall.

Get in touch with your local board of developmental disabilities and look into getting someone to sit with him.

I know of several Independent Providers that go into individuals homes and provide respite care, they are employed by our local Board of DD.

Up Vote Up Vote ×

Hugs to you! This is too much for one person! You need to hire help. Do you have any family that can take shifts or help? If not then hire a home health aide or visitng nurse. You know on the airplane when they say you need to put your own o2 on before helping your child? If something happens to you, who is going to be there to help you? You cant be there for your son unless you take care of yourself, and with your husband sick too, this is just too much for one person to bear! I wish I were your neighbor, I'd come help! Is there a rehab facility he can go to? Can you call a social worker or case manager? This is too muc for one person alone, you need help please dont be afraid to ask for it, and fight for it with insurance if that is what you need. Your obviously a great mom. I wish you the best and hope you get the help you need!

Up Vote Up Vote ×
Specializes in Med/Surg, DSU, Ortho, Onc, Psych.

You can't do this alone. This is too much for one person. We women are all given the subliminal message today that we are superwomen, and if we can't do it all we are somehow a failure! It's funny cos I was just having a conversation re this today with a woman I met.

Contact ur local community services department, or local hospital, and ask re putting him into respite care. He really needs a special, 1:1 care.

If u try to do all this, you will crack and get ill yourself.

And BTW why on earth is ur husband out of the hospital after vomiting blood & if he can't even sit up straight? I'd be questioning that - he needs further investigations, or at least to be kept in for a few days to see what is going on.

Up Vote Up Vote ×

Yeah I would think contacting your local/state DD agencies might be able to help--I don't know what you have there but here in NY we have a large number of county agencies plus the state DDSO. You must have several in your area.

And the mattress on the floor is a good idea--I did that with both of my kids when they were unsafe in a crib (me worried they could jump/fall out)....I transitioned to the mattress on the floor for a good year,maybe two before going to a full bed with frame and box spring. They can roll out and not really have any injury.

Good luck to you. Your son is lucky to have such an awesome mom.

Up Vote Up Vote ×
Specializes in Hospital Education Coordinator.

I would discuss with your insurance company, if any, about home care. Talk to the MD office about home health referrals. Consider the Social Worker at the hospital for a phone consult. If your son has a case worker they might provide insight. Considering your son's mental handicap your state might have options, so the Health Dept might guide you as well. Good luck!

Up Vote Up Vote ×
Specializes in OB/GYN, Peds, School Nurse, DD.
What does he really love to do most? What age level is he developmentally?

Is he able to play with any hand held video games? puzzles? books? stickers? hot wheels? an action figure? or stuffed animal?

Does he have any favorite movies? Maybe he could open a present every day, even if it's something really little. :giftbox::stocking::bell::hanukkah::tosanta:

I'll be praying you hear him, too, and also for your strength. :redpinkhe

DS15 is developmentally between 8 & 15 months old. He walks, but cannot talk, feed, dress or bathe himself and he's diaper-dependant. He plays with two toys--a mirror and a small musical toy. He doesn't really watch TV, but he likes music. DH is going to go out to the RV and bring in the little TV w/DVD player and we'll put on some of those DIsney Sing-Along videos. He's getting "Fantasia" for Christmas and we might need to go ahead and break that out. He loves that video. Other than that, he doesn't have any other activities except walking. This boy walks a mile a day with his CNA. Plus, walking around the house, school, and yard. Walking is his biggest joy.

I was going to suggest an enclosed bed but it seems they are very difficult to find because many of them have been pulled from the market.

This is a good idea. I've seen them used at the Childrens Hospital. I imagine Medicaid is going to require us to try the regular hospital bed first before they're going to fork over that kind of money. But I will definitely keep this in mind.

And BTW why on earth is ur husband out of the hospital after vomiting blood & if he can't even sit up straight? I'd be questioning that - he needs further investigations, or at least to be kept in for a few days to see what is going on.

Good question: My understanding is that they didn't find anything serious in his bloodwork(no anemia) and couldn't find evidence of anything other than vertigo. He hasn't thrown up again. It is possible that he refused to stay--he hates being in the hospital and truthfully, it's probably better if he doesn't stay there with all the flu and other germs. He's immunosuppressed anyway, so every little thing lays him low.

And the mattress on the floor is a good idea--I did that with both of my kids when they were unsafe in a crib (me worried they could jump/fall out)....I transitioned to the mattress on the floor for a good year,maybe two before going to a full bed with frame and box spring. They can roll out and not really have any injury.

.

I hadn't really thought about putting DS on the floor. I have no objection to that in theory.But I don't know if we could get him *off* the floor once he's down there. I'm having a hard time getting him up in bed, and he's in an electric hospital bed. I think his rib is pretty sore still.

DS slept through the night. I was up and down, had a little panic attack right at the beginning of the night when I ws trying to go to sleep. I'm going to go now and start making calls to various state agencies. We're going to need some $$$$ to pay for caregivers and those agencies have the power to grant it. There is no way we could pay for it ourselves.

Would it be horrible if I put him in a restraint vest for part of the day? Like, when I need to get a shower or go to the bathroom? Or cook supper? Unfortunately, we have NO ONE who is comfortable caring for DS. Our friends and family love him dearly, but they are intimidated and uncomfortable with the daily stuff. Especially the diapering, feeding, dressing, and bathing. DD17 is good with him. She doesn't mind sitting with him, but she's still in school this week. Plus, she's significantly smaller than DS.

I am acutely aware of the need to protect myself. I have a history of severe depression, so I really have to guard myself. One of the things that will set me off is sleep deprivation. I think as soon as DH is able, he's going to have to take his turn sleeping beside DS, just so I can get good rest a few times per week. At least, until we get this caregiver issue resolved.

This is the biggest "project" I've even undertaken and I feel woefully inadequate to the job. Thankfully, Christmas is taken care of, finished up last weekend. I'm hoping that some of our friends will help out with meals a couple times a week, to give me a break. One of them brought me some xtra-long twin bed sheets last night for the hospital bed. My mom, who lives 400 miles away, is ordering a couple of egg crate mattresses for DS. So far, our practical needs are met. Thank you all for your suggestions and good wishes. I'm gonna get right on this.

Up Vote Up Vote ×
Specializes in DD/MR, long term care, homecare.

You've gotten lots of good advice so far. There are some alternatives to restraints you may want to consider that you can buy from a medical supplier. A pressure alarm to go under his mattress on his bed would sound if he tried to get up at night, for example. If he has a wheelchair or another chair he sits in a lot you could try a wedge cushion underneath him that makes it harder for him to stand up on his own. Getting some homecare services, especially a nurse and an occupational therapist (to help with some of this equipment) would be a great idea too.

Up Vote Up Vote ×
Specializes in OB/GYN, Peds, School Nurse, DD.
You've gotten lots of good advice so far. There are some alternatives to restraints you may want to consider that you can buy from a medical supplier. A pressure alarm to go under his mattress on his bed would sound if he tried to get up at night, for example. If he has a wheelchair or another chair he sits in a lot you could try a wedge cushion underneath him that makes it harder for him to stand up on his own. Getting some homecare services, especially a nurse and an occupational therapist (to help with some of this equipment) would be a great idea too.

Great ideas! I like the wedge cushion--I don't think he could get up so easily with that in place. And the bed alarm would be great. My biggest fear is that I won't wake up to hear him.

Up Vote Up Vote ×
Specializes in DD/MR, long term care, homecare.

I get the feeling with a disabled child you're probably a pretty light sleeper as it is ;)

Up Vote Up Vote ×
+ Join the Discussion