Colleen[7]: !@#@$@#!@#$!@#$!%^ and planning

[mdlbear]

OK, so it looks like they want to send Colleen home tomorrow. We're dealing with the US health care don't give a damn system here, so the probability of changing that is nil. At best we might be able to fight a delaying action, but even putting it off until after Thanksgiving is unlikely. It's not like they have souls or anything.

(Update: 11/22 2pm She'll be moving to a skilled nursing facility, no earlier than Monday or Tuesday, and will stay until it's safe for her to be at home with less than 24-hour care. Apparently the doctors who she spoke to this morning were unanimous in saying that she couldn't go home yet. No telling where in the chain of command the idiocy was located. Kaiser covers 100 days/year of skilled care. Renting a hospital bed for when she does come home will only run some $20/month, but see below for a better long-term solution.)

Here are the major problems:

1. It's 50 feet from the bedroom to the front door. Sometimes she needs to use a walker for that.
2. Family members are in school or at work much of the day. If she can't be left alone for a couple of hours at a stretch, or needs someone closer than a half-hour drive on call, we're simply hosed. We do not have long-term care insurance.
3. The bed is too high for her to get safely in and out of.
4. The toilet in the front bathroom is too low for her to get safely in and out of.

Here are some possible solutions and side-notes:

1. If there's a kind of pump that hangs on a shoulder strap, or an IV pole we can attach to the walker, she can get around the house safely by herself. This may require hardware hacking on my part.
2. I can work half-days from home; Kat can take over in the afternoons. Still, if she needs someone closer than half an hour -- and preferably an hour -- away all the time, I don't see how it would be possible. There are errands, shopping, dentist appointments, taking the kids to school, you name it. The friends most likely to be free to help don't have cars.
3. She can use the airbed in the sewing room temporarily. Longer term, I can set up a hospital bed either in the sewing room (which is really too small for it) or in the part of the living room that used to be the master bedroom. It already has curtains for privacy; I suppose we could put the wall back up at some point and make it a guest room. I've been thinking about that anyway.
4. We need a higher toilet in the front bathroom anyway. And grab bars in both bathrooms. Short term, if she's in our bedroom or the front, she can use a commode; that would require clearing out space in our bedroom, but that's another project that's been put off too long.

Another possibility longer term is simply replacing the bed in the bedroom with a split, adjustable bed -- I know they exist. It would be expensive, but there's not much to be done about that. Right now we're using the space under the bed for storage, but that almost certainly would be less stuff to move than what's in front, which includes a couch and the Wolfling's pile of wedding presents. Those will all go away around the end of January, but hopefully by then Colleen will be better by then.

Longer term, the household is simply hosed. We don't have long-term care insurance (my stupidity about 15 years ago, and not fixable now) and it's inevitable that one or the other of us is going to get sick enough to need 24-hour care. I don't have enough cope to deal with that one -- ever.

Comments

[mia-mcdavid.livejournal.com]

Short term solution for the low toiler; I'm pretty sure they make booster seats.

Call your county social worker and find out if they have any help to offer for in-home care. Explain the situation. For that matter, ask of the HOSPITAL has a social worker. They should...

Hang in and good luck!

[jcfiala.livejournal.com]

When I was recovering from a leg injury, they had this booster seat with support bars that sat above the toilet - it was something like a cage around the toilet that gave me a seat high enough to work with and bars to maneuver with. This was in the late 80's, I'm sure they still make them.

[catsittingstill.livejournal.com]

Amazon has got a box of two (if I'm reading this right) here

But you can probably get them more quickly from the local surgical supply place, as otherdeb suggests below.

[mdlbear]

They do make boosters; we've used them in hotels recently. But Home Depot has tall toilets these days, for ~200.

We'll get help, and training for the take-home pump when she's ready for it.

In a word ...

[capplor.livejournal.com]

Damnation!

We want to help & we're too far away to do so.

Did you ever get through to the Ombudsman? Hospitals in California are required, by law (& guess how I found out about this one ...) to have one available to patients & their families 24/7. The fact that most people aren't aware of this means that the hospital may only have one on site during any given week. Tough. Use that resource, get him/her out of bed or back from Hawaii or whatever. & be sure to threaten malpractice (as in "name your lawyer") if Colleen gets any worse after release.

Then write a nice, friendly, letter to the Mercury-News about the piss-poor treatment which she is getting. I remind you that figmo is a journalist, and should be available for good advice and possible connections. I once used a reference to her to conjure threat, as in "I'm going to pass out in your airport right in front of you, and tell my personal friend in the media all about it."

Meanwhile, will prayers help?

Re: In a word ...

[mdlbear]

Things have been resolved satisfactorily, though I still have no idea which idiot needs to be kicked in the arse as a reminder.

[lisa-marli.livejournal.com]

Definitely talk to the Patient Assistance People. There is indeed more than one and tell them, You are Not set up to bring Colleen Home. You have No Training in her care, and no way to take care of her.
Doesn't she still have the Ostomy Bag? Have you been trained in taking care of it? By the Wound Care Nurse? Accept training by No One Less than the Wound Care Nurse. This is tricky stuff.
Isn't she still on an IV? Have you had training in taking care of it?
I do know they will send out Home Care Nurses to help with her care. But they can't be there 24/7. And most of them are NOT Ostomy Nurses. Unfortunately, I KNOW this!
*Scream at them* I know it is frustrating, but they are being IDIOTS. Sending someone home on a Sunday, when there is little support available, and No One to Train you is a Train Wreck waiting to happen.
You can Refuse to Let her come home. You do have that right as well!!

Long Term Care would Not Take Care of This

[lisa-marli.livejournal.com]

Just re-read the rant. Long Term Care does not take care of this. Long term care is for Care in a Nursing Home facility. They have, at best, a limited At Home part of the policy, and that is for Visiting Nurses, ie an hour or two a Day at best.
Kaiser will give you an hour or two of Nursing at Home at Day to care for her nursing needs.
But you really need something closer to 8 hours a day of a Nurse, someone really trained in Medical care. Not some LVN type thing.
So don't beat yourself up on that one. There is little that a Long Term Nursing Care policy would help you with at this time.
But yes, if we had Real Universal Care like the rest of the civilized world, a lot more support would be available from the Visiting Nurses and other medical staff at this time.

Re: Long Term Care would Not Take Care of This

[mdlbear]

Yeah, she gets wound care, probably on an outpatient basis, and the ostomy nurse is visiting later today.

"...like the rest of the civilized world"...

Re: Long Term Care would Not Take Care of This

[thnidu.livejournal.com]

"if we had Real Universal Care like the rest of the civilized world"

Re: Long Term Care would Not Take Care of This

[ltcmonthdotcom.livejournal.com]

Important correction here: Most long-term care insurance policies WOULD cover exactly this kind of situation - the one big exception being Long-Term Nursing Home ONLY policies. Most policies sold these days are what are called comprehensive policies - covering care in your own home, assisted living and in nursing homes.

My mother-in-law bought her policies about 15 years ago, and they paid for years of assisted living facility care needed due to Alzheimer's. My dad collected on his policy when he had terminal cancer - it paid for home care so that my mom could sleep at night, and also know that she wouldn't be alone if dad fell.

Hope this is helpful.

My name is Marilee Driscoll. I'm a professional speaker on the topic of long-term care planning (in crisis and when there's time to plan) the author of "The Complete Idiot's Guide to Long-term Care Planning," a weekly columnist (LTC123 for Gatehouse Media news service) and maintain the web site www.LTCmonth.com (subscribe to a free newsletter, find local help and post questions there).

FlowerCat Update

[chaoswolf]

Just spoke to mdlbear: She will not be coming home for the holiday --- there was a drastic miscommunication which he is still very grumpy about. It is most likely they will be releasing her from the hospital Monday and placing her instead in a skilled nursing home somewhere nearby. She will be released from the nursing home when she feels safe being at home for entire days on end.

Re: FlowerCat Update

[deborah_c]

That's a relief to hear. Will you pass on my love to both of them?

Re: FlowerCat Update

[chaoswolf]

Indeed. mdlbear himself will be posting an update later.

Re: FlowerCat Update

[mia-mcdavid.livejournal.com]

Oh, GOOD! This is much more reasonable. Poor Bear doing all that stressing...

Re: FlowerCat Update

[chaoswolf]

He's not the only one. I'm holding a morale support party with mdlbear's consent.

Re: FlowerCat Update

[catsittingstill.livejournal.com]

(hug) and another (hug) for the bear.

Re: FlowerCat Update

[mdlbear]

((hugs back))

Thanks.

Re: FlowerCat Update

[otherdeb.livejournal.com]

What a relief.

Also for when she does come home, if your dad checks the local pharmacies that are surgical supply places as well, or just looks up surgical supply places, there are booster seats that can either go under your toilet seat and attach to the toilet, of go over the rim of the bowl and be removable. In either case, they raise the seat to a safer height (and are very nice if you aren't disabled, but have long legs). My ex has one of each, since his wife has problems with the seat height and safety issues.

Re: FlowerCat Update

[mdlbear]

I was delighted to find that Home Depot carries several different flavors of high toilet seats now.

Re: FlowerCat Update

[artbeco.livejournal.com]

When I came home with my broken leg, Paul found a great solution to the low toilet problem; our local medical supply place had very affordable grab bars that actually install on the back of the toilet. It's a bar the goes along the back of the toilet and raises up on either side with a sturdy covered grab bar. I think it ran around $30.00, and it was exactly what I needed to be able to get up from the toilet with only one leg. I found the booster seats to be rather tippy, unstable and rather scary; you really want the grab bars in addition even if you get a taller toilet. The medical supply place also had toilet shower stools and other implements that help; they're really worth checking out.

Re: FlowerCat Update

[mdlbear]

Definitely agree on the grab bars -- I'll have to look for that one.

Re: FlowerCat Update

[catsittingstill.livejournal.com]

Oh whew! Thanks for letting us know.

I'm so sorry about your troubles, and the mixup, but relieved to hear she won't be tossed out of the hospital just yet.

Re: FlowerCat Update

[chaoswolf]

I'm holding up rather well. Emmy can't go visit without breaking into tears -- I was very confused when I heard about it.

Re: FlowerCat Update

[catsittingstill.livejournal.com]

I'm a bit confused too, as I'm not sure who Emmy is, but I hope things get better soon.

Re: FlowerCat Update

[chaoswolf]

Emmy is the younger sister, youngest spawn of mdlbear and flower_cat.

Re: FlowerCat Update

[mdlbear]

Emmy is the Younger Daughter (usually abbreviated YD not so much because she's underaged as because it's easier to type than '<lj user="super_star_girl">')

She's 16, and at least an inch taller than me.

Re: FlowerCat Update

[mdlbear]

Thanks, Woof!

[randwolf.livejournal.com]

I know--or knew--two decent skilled nursing facilities in the area. Do you want the names?

Skilled Nursing Facilities SNF's

[tetralizard.livejournal.com]

The only warning I have about SNF's is the nurses (LVNs). If Colleen isn't that loopy, have her journal her care there. Or even have copies of her records given to you daily on what kind of treatment. I worked in the SNF office (Kaiser Santa Clara) coordinating the Dr's visiting all of them around the South Bay and it was crazy the messages the LVN's would give me. I had one where a nurse called me asking me to page the Dr because the guy went into Cardiac Arrest and wanted orders to start CPR and he did NOT have a DNR (Do Not Resusitate) on file. I had to scream at the nurse 5 times follow protocol and do CPR! DO NOT WAIT FOR THE DR TO CALL BACK!! (I would have to page the Dr, the Dr call me, I tell the Dr the message, then the Dr call the facility and find out what is going on - 15 minutes at least) Most of the nurses barely spoke english and got their training in their homeland. I'm sorry to scare you with this information, but this is what I experienced first hand and I've spread the information asa a FYI to my family with my grandparents care and my aunts care. Definately have an advocate for Colleen if you can. My cousin is a lawyer and pretty much worked from my aunts room while she was hospitalized to make sure my aunt got the appropriate care.

[artbeco.livejournal.com]

Another voice who's dealt with skilled nursing facilities first hand here; I was in one between the hospital and home during the summer after I broke my leg.

I'd strongly suggest that either you or the Wolfling be with her when she gets transferred to keep an eye out and act as her advocate right from the get-go. If the staff is aware that she has a concerned family who will be there often, Colleen will be better off. She'll also need some reinforcement that she is not demented, retarded or incontinent or any number of other old-age problems, and having a family member there as a witness and advocate was invaluable to me. I can't emphasize that enough, really. You also can make sure she gets a decent working bed (which we had to fight for) and easy access to the bathroom, or a commode within an easy distance, and some privacy at least through curtains. I don't mean to scare you, but in the beginning of my stay we decided that it would be best if I had a family member there as much as possible to act as my advocate, and I am certain that it helped overall.

I will have to be honest and confess that the extended care place I was sent to scared me and freaked me out, and maybe Colleen is more resilient than me, but she'll need regular reassurance that it won't be forever. Extended care places are noisy at night and the tendency of the staff will be to assume that she's a)not all there, and b)not likely to leave. The nurses were really mostly very nice, with a notable exception or two, but the overall atmosphere can be quite wearing. Now hopefully she'll go to a good place, but even so, you'll want to do things to keep her spirits up. Flowers, pictures on the wall maybe, music she can listen to through headphones to block out the rest of the place and escape (very important to me while I was in there!), something to occupy her during the days and evenings.

Let us know where she goes and what room, if you would, and I'll try to go visit after Thanksgiving, if it would be a help at all.

[mdlbear]

Thanks for the advice. I'll definitely go with her during the transfer, if it's at all possible.

[jenk]

Glad you've got a better plan together...

Re: the house, I think you've got a good idea in a first-floor, accessible bedroom. A 3/4 bath would be a good idea too. When jw1776 broke his arm he would sleep in his recliner (first floor) or sofabed (first floor) but all the showers were upstairs.

At least it wasn't his leg...!

[mdlbear]

Fortunately our current bedroom is also on the first floor, with a bathroom that has a high toilet seat and a walk-in tub. The front area used to be the master bedroom before we took a wall out to make it part of the living room; it has access to the front bathroom. The kids' rooms are upstairs, but the house started out with a single floor, and we left it that way during the first remodel.

The only accessibility problem is that none of the bathroom doors are wide enough to pass a wheelchair. Oops. We'll probably end up taking out the trim around the door frames and putting in heavy curtains.

[thnidu.livejournal.com]

Hey, we hadn't thought of those. We're hoping to add a bathroom on our first floor One Of These Days, but there's not much room for doors so dunkelpig was thinking of the kind of door that slides into a pocket in the wall. But this could be a good option too.

[mdlbear]

The pocket doors are better if you're putting in new walls.