Playing Stupid Hospital Games...

[mattl]

Hey, thanks everyone-

Lot's of good advice, I've tried some of it without much luck. We have visiting nurse/hospice at this point - at least for another week or so. I called the team leader, we're on the "red" team and left a message saying I need info and help with res-bit care, but she never returned my call. I called the insurance company, Blue Care Network, talked to the social worker. She gave a list of agencies I could hire at my cost to help, other than that drop dead. Called the social worker at the hospital where he had his rehab asking for advice and she never returned my call- so I get the message- they are not interested in helping.

The last time we did nursing home/rehab was a disaster. He was there 6 weeks and made little progress. He broke his femur and needed rehab to get back to walking. They kept him in a wheel chair and his therapy consisted of folding clothes and stuff, very little effort to get him walking. I pulled him out of there, they came and did a home study with him and the therapist told him odds are you will never walk again. With a little real therapy he was out shoveling snow a month later. This was the highly regarded Heartland facility near by. My brother and I looked at many facilities and this was the best of the bunch.

His Dr. said in a nursing home setting they would put a Foley in and in short order he would get infections become septic and die, I thought the same. The Nursing home has no incentive to get him up and out, the bed is filled they are happy. The hospital rehab was exactly what he needed and needs. They take no crap and make him do the work. Their goal is in and out.

Money is tight but he's not low income so there is no help there. I feel like I'm caught in a catch 22. I really appreciate the support from people here. I have a large family but now they are scattered and cannot offer much help. Plus they all have kids and jobs that keep them very busy. My brother is of little help even though he lives only 2 or 3 miles away. It'd be nice if he made dinner now and then and brought it over , but that thought does not cross his mind. Said to him he might have to spend Fri. afternoon here so I can go out and do a few things and he just rolled his eyes. I have been able to get him to do a few things, but it's difficult. He has his own problems, he's been suffering from severe back pain for years and was told by his specialist that surgery was not even an option. There are days he can barley walk. So,I give give him a little pass on some things. It's good to be able to vent here a bit and I really appreciate being able to do that!

 

[mattl]

Sandy, sound like you have lived with a lot of what I'm going through, though the father/son dynamic switches things up a bit. I've worked though the resentment stuff for the most part, we never had the best of relationships.

Had to nod my head about the bathing thing. Last week the guy came to give him a bath and my dad was in one of his moods and tossed him out. My dad was in a pleasant mood today and I told him the guy was coming to bath him and he just lost it. Yelled and screamed how he can give himself a bath and on and on. I asked why he hasn't then, he said he didn't feel like it. Got into an argument and I walked out to avoid it getting worse. A few minutes later he asked why I can't do it. I told him it's one of the few things the ins. co. will pay for and I need a break. He was still insisting I do it and I flatly told him no. A little later he asks what time is the guy coming, I told him I apologized to him and told him not to come. My dad kept insisting he can come anyway and I told him it's done at this point and he's on his own bathing wise. He doesn't care...

 

[danemodsandy]

Matt:

Yep, ManorCare's Heartland is capable of rendering really good help. However, being eligible or not can make a huge difference in what you can get access to. Since you're in that grey area where there is too much money for total assistance, but not enough for the Cadillac treatment, you might talk with both Heartland and Hospice of Michigan (link below). Heartland has a vested interest in finding assistance with payment if there is any way in hell to do it, because that's how they get paid. Their staff bent over backwards to discover resources for us. Hospice of Michigan is an umbrella organisation that deals with these issues too, and can offer informational assistance with ways to find care.

I feel for you on the trip to the movies and the bath. Sad to say, patients get abusive, very much so. There are reasons, of course. One, they know they won't be able to control anything at all much longer, so they control what they can while they can. Two, it's a way of distracting themselves from their physical ills and their emotional trauma.

Abuse by care recipients is one of the least-known phenomena in end-stage care - everyone is focussed on detecting and preventing abuse by care givers, which is of course a very worthwhile goal. But not many people understand that recipients need a good talking-to and some boundaries laid down every once in a while. It helps to have a nurse or social worker who "has your back" when abusive behaviour occurs. The social worker I had, Holley, would have faced off with your dad about the movie incident and told him point-blank: "Sir, you were well cared-for; your son made excellent provisions for you while he was gone. He has to have breaks if you want to stay in your house instead of going to a nursing home. Matt didn't do anything wrong - he even made sure and got a family member to stay here with you instead of a stranger. You are lucky to have someone who cared that much; I see other people all the time whose caregivers don't give a hoot. You have to accept that not everything can happen just the way you want it to. If you can't accept that, it could have an effect on whether you can remain in home care."

Holley preached this kind of Sermon on the Mount more than once, trust me.

I hope that you can get some help in there quickly, because I can sense you're at a point where you're not feeling good about your ability to cope with everything demanded of you. Try some calls, and don't forget church; pastors often know of resources the rest of us don't suspect exist, including volunteers, or someone older who's still in good shape and would be glad to earn a bit of money giving you an afternoon off. You have to scream for help before anyone hears, it seems, but when your cries are finally heard, things generally start getting better.

 

[danemodsandy]

Forgot the Link:

Hospice of Michigan:

Welcome to Hospice of Michigan
Hospice of Michigan provides comprehensive, compassionate comfort care to people with acute chronic illness and support to their loved ones.

We have lived this commitment in our communities for over 25 years. We care for all who need and seek our services, regardless of age, diagnosis or ability to pay.

Need more information or want to refer a patient? Call our Access Center, available 24 hours a day, at 888-247-5701, or use our Patient Care Services Contact Form.

Underlines are mine, Matt.

http://www.hom.org/

 

[brisnat81]

I spent four months last year providing 24 hour care to my partners Mother. She'd been battling depression for a long period of time and when things finally came to a crunch at Christmas in 08, we brought her back to live with us. She's now almost 70 and been a widower for almost 10 years.

I quit work, and spent my days as the parent of a small child. I had to make sure she was showered, was eating, provide physical activity, take her to her appointments and deal with the mood swings, tantrums and everything else. In that four month period We had 2 weekends off when my Mother came to stay with her.

We finally reached a point where we couldnt do any more for her without fulltime care and therapy. We found a hospital that could provide the Medication, the councilling the physical therapy and many more activities.

We then at least got our lives back. We'd go and visit her each day for an hour, still to cop the abuse and her paranoia but at least we could go home again. The first night we got her into care we spent the night at home and cried for hours.

They provided all the care that we were, plus helping her get back on track. We felt better about her and what we were doing, because we then had time off and could distance ourselves from it a little.

5 months later she was back at home and is now like a new person.

I realise that this isnt entirely analoguous to your situation, but regardless of what your dad wants, you need to get the support/care that is required for him and yourself. At times we had to bully Michaels mum, because as far as she was concerned she didnt need hospital or anything other than our care. Her impression of things was that she could live independently it just wasn't the reality.

It doesnt matter whether it is in house or provided by a hospital etc, but you need to be able to get some time to yourself each day to recharge your own batteries.

Keep looking at homes/care facilities. They cant all be like Shady Pines and the right ones are about rehabillitating people so that they can go back to a lesser level of care.

Sandy's advice is great, keep looking for support/care facilities and I'd try talking to other doctors as telling you your dad would be maltreated in care is just counter productive.

 

[panthera]

Nate,

We have to remember that the US health care system sucks the big one, even for people who are fairly well off.

My parents have too much money for me to be able to get any sort of home assistance for them, at all.

My brother refuses to help, I just got my ass reamed twice in the last week for asking his son-in-law to help me move some stuff in their house too heavy for me.

I agree that Matt needs help here, and I would like to see every 'Christian' and Republican and 'conservative/libertarian/you-don't-know-a-thing-about-me' person on this blog join in to help him.

I'm too far away to offer personal aid, but I'd toss in a few bucks (literally, that's all I've got) if we were to set up a relief fund to buy him a bit of time off.

How's about it all you out there who decry us Godless liberals and progressives? You want to offer Matt some help? After all, you're the reason we don't have a decent health care system in the US. What did Reagan call it? Oh, right, 'voluntairism'.

Seriously.

 

[mattl]

Panthera, thanks for the offer, but it's not that tight... ;-)

The whole point of this thread was to help me do what appears to be impossible -- get the care my dad needs to get back to a normal life. There should be a way to get around the "no direct admission" rule that the hospital has, from what I understand it's govt. mandated.

This situation exemplifies exactly what is wrong with the current health care system in the country. I am more than willing and able to provide the bulk of the care he needs, I just need help with the remaining 10-20%. It is a hell of a lot cheaper for an insurance co. to give me a little help in the home than to put him in a nursing home for who knows how long. But no. Same for the hospital rehab that served him so well, 2 weeks and he's good to go and I would not need any home care.

I know there are ways to work the system, I'm sure it's done. But you need players that are willing to help and I guess I'm missing that key ingredient...

 

[danemodsandy]

Matt:

One thing that was a little hard for me to accept with my partner was that my biggest resource was me. I won't try to duck it - I really wanted some things to happen magically, which they don't.

When he had his first fall, he went into hospital for two days, was ill (tempered) as a hornet, discharged himself against medical advice, and came home and changed none of his ways, except he became more demanding.

The second fall was the real turning point. That time, he was in for two weeks, and came home weighing about 108 pounds, his chart marked "failure to thrive," and with the hospice people telling me, "This man has about two weeks. Sorry, but that's the truth."

Well, that really, really angered me, because he'd been in hospital for half a month, and was coming home in far worse shape than when he'd gone in. The hospice people were trying to be helpful, but they were calling it as they saw it. As Delta Burke used to say, Oh. Kay.

That meant I had to ask myself what my partner would want (he was very out of it much of the time at this point), and what I wanted. Well, I didn't want anyone dying if it could be avoided, that was for damn sure. And I'd seen part of the problem at the hospital (Veteran's Administration); the food was awful, no choices on anything, everything sealed up in dreadful wrappers that debilitated patients couldn't open. And I couldn't help him there, because he was an MICU patient, with very restricted visiting hours.

So, I began feeding him. Not just feeding him - I fed him like it was his birthday at breakfast, Christmas at lunch, and like he'd made it to Heaven for dinner. He got all his favourites, he was asked what he'd like, and no damn wrappers on anything.

He began responding within a week, getting some colour back and complaining about being in bed so much. I brought him the walker and told him that he needed to do something about that. It was like two steps that day. Three a day or two later. Same thing the day after that. After about two weeks of exercise, he was able to manage trips to the bathroom - about twelve steps - again by himself. The hospice people were amazed.

For all their training, no one had thought to give him what he liked, nor had they thought to insist that he do what little he could. I had to spend a lot of time with him while he exercised, for fear of falls, but he got stronger and walked better every week. The professionals didn't do this for him - they have a different mindset. Plus, they didn't have the latitude to talk back to him that I did - which I did, trust me. I was as kind as I knew how to be, but sometimes my partner was his own worst enemy, and at those times, I did say what I thought needed to be said. We used to joke that my frankness gave his circulation something to fight against.

So, it might be helpful if you just tell the old gentleman that it's time to get his arse out of that bed and walk until he can't any more, at which point you will help him back to it. However many steps he takes that day, count 'em, and insist on at least one more step the next day. And one more than that the day after, and so on.

That's what P.T. is anyway - getting the patient to strengthen himself one exercise period at a time - and you can do a lot of that just being there with him. If you do this, be sure to praise when praise is due, and not in a condescending way - celebrate with ice cream, or whatever. Tell him you're proud of him if you are, or just that you appreciate his efforts, because they're helping you - which they will, because anything he can do for himself is one less "M-a-a-a-a-a-a-t!" you have to run answer.

My partner eventually got so much better that the hospice company had to discharge him under Medicare rules - he was not showing the decline needed to maintain eligibility. Sadly, when he returned to V.A. care, he was given sleeping meds again unsupervised, and started abusing them. I hauled fourteen partially used containers of Temazepam out of his room at one point not too long before he died; the stuff affected his health so much he ended up with more heart damage and back in hospice care, this time for good. That's another story, though.

 

[alr2903]

MattL. Ask for primary care physician to write a "admit for obsvervation" and a set of admit orders, that contain the phrase, reconsult rehab. There are freestanding rehab hospitals if the "in-hospital rehab center will not accept your father. Medicare $ TALK. You would do well to report a ongoing low grade temperature if present, failure to take adequatre nutrition, diarrhea, no symtom should be overlooked when you speak with the physician. I do mean speak with the physican, Not an office staffer. You will never regret running with the ball, for your DAD. Good Luck. alr2903

 

[alr2903]

MattL sorry to post twice, this urinary incontinence if a new onset could be a sign and symptom of a urinary tract infection. arthur

 

[kqkenmore]

I googled the senior services for your area and this is what I found Valley Area Agency On Aging(810) 239-7671 this seemes to be like what we have here in memphis the aging commission of the mid south they are the resource center for help.Maybe they have a social worker that might give you some advice as to what to do.You may yourself want to go on to google and see what comes up for your area.You have a lot of great suggestion here I hope that this is some help.The main thing is to take care of yourself.Also keep letting your needs be known to this group so that if there is any way that we can help we will.Carl

 

[mattl]

Yes, I am aware of the VAAA, they are my charity at Christmas. Seems like kids always have some group looking out for them, but there are lots of lonely seniors who could use a little Christmas too.

They are my next call. I'm a bit upset with all the calls I made not being returned. As a courtesy an "I'm sorry I can't help you" call would be nice.

I'm reticent about getting someone in, first the cost is a consideration, a few hundred a week is not an issue, a thousand or more is, I have no idea what the costs are at this point. I would assume it's reasonable for a few hours a week. Then there is the hell I'd have to tolerate if I did that. 4 or 5 hours away resulted in a meltdown on Sat. and again on Mon., for some reason Sun. was OK. Dealing with that ongoing would be worse than what I'm dealing with now.

 

[mattl]

alr2903, good points.

We are dealing with a gout issue at the moment and went to the Dr. yesterday. Had a long talk with the Dr. He said he understands what I'm going through, he just went through the same with his mother. He said his wife and daughter and he cared for her around the clock as I am until she died a few weeks ago, at least there was 3 of them. Certainly he would have the resources available to get something done but he said he was in the same situation as me. He seemed as frustrated as me. He said he's burned out and considering retiring. He really cares about my dad and treats him like he would a family member. He feels strung up with the insurance rules and regulations and can't do as he would like.

I'll have to look into the free standing rehab hospital aspect, thanks.

 

[sudsman]

Talk to your DR

Tell him all the problems,A good dr will let him go back to the hospital for one night then send him to rehab.. They can only go to rehab direct from the hosptial beacuse that is the only way Medicare will pay. I had to do the VERY same with my brother..

 

[mattl]

BAAH!

Another dead end. Called the Valley Area Agency on
Aging, they can't offer any help for resbit care. They are set up to do what I already have, RN and social worker, and they offer contacts for in home help with breakfast and light housekeeping, bathing, ect. but I don't need that. They have no idea who has the contract for resbit

Asked the visiting nurse what she knew of and she had nothing to offer either, The Phys. therapist mentioned Caretel Inn, free standing rehab, checked into that but they are not open until March.

Next up a call to Hospice of Michigan...

Thanks again for all the support and links, it's great that those of you who linked took the time to look up the info, make it much easier for me!

 

[mattl]

Called Hospice of Michigan, they said they don't cover my area but suggested a few things. They told me they get involved when the patient has 6 months or less to live, though it can be extended if the patient improves or plateaus, but they need a Dr.'s order.

 

[danemodsandy]

Matt:

Here's another idea:

Since you say there is some money to work with, it seems possible to hire someone for a day or so a week. Here's my idea:

Get someone who's older - say, 65 or so - and still in good shape, but retired. Someone who's sharp, able to drive and has a car, all that.

Someone like that has some understanding of your dad's needs, and also would be happy to have a break from their routine.

One of my older friends, Frances, does this. She doesn't have anything to do since her retirement, so she sits with an Alzheimer's patient two days a week (all day). The extra money is good for her - plus she gets out of the house - the patient's family gets some respite, the lady with Alzheimer's gets a little change from family members (which she likes), win-win-win.

I think Frances earns something like $200 a week for her efforts, which is Big Money to her, and funds a lot of pleasant little things her retirement income won't stretch to, like going to Olive Garden and Honey's (a Durham, NC restaurant that's an institution for breakfast) with her cronies.

Admittedly, the chemistry is good in the situation I've just described, and your dad has exhibited some stubbornness about changes in his preferred routine, which is The Matt Channel: All, Matt, All the Time. But if you could find someone he likes, that seems like a possibility.

Chemistry is key. My partner could be pretty rough on care provider personnel the last year of his life, except those who had military background. My partner had loved his time in the Army (German occupational force in the '50s), and would talk about military stuff for hours with anyone who had been in the military. Our chaplain was active-duty Navy, and it was great when she came over, because they'd sit and gab for hours and hours and hours, while I went and did something else.

You know your dad. Find his buttons and push them - in a good way, of course.

 

[mattl]

I've come up with an idea but not sure if it will work. My cousin's sort of ex-wife buried her 104 year old grandmother in Nov. She had been caring for her for quite a few months. In doing so she lost her job. Might ask her to spend a day here now and then, I'm sure she could use the money. Just don't know how my dad would react to having her help him to the bathroom. Might use the condom catheter those days to minimize trips.

I like the idea of an older person, just not sure where to find one. I found a number of agencies in the area that do respite care I'll have to investigate further. That will help me out, but still need to find more therapy for him.

 

[panthera]

Matt,

That is an excellent idea.

Do you suppose you cold coordinate that with one of the regular appointments with a visiting nurse so that you might actually escape for a longer period of time?

Most heterosexual men don't mind having catheters replaced by women if they consider them to be working in a professional capacity. It is like when a tailor fumbles with your junk to find which side you 'dress' or your barber runs his fingers through your hair and shaves you - approached as a professional relationship (and phrased in terms of being to his advantage) I bet this would work.

Good luck!

 

[mattl]

Just an update...

Thanks for all the encouragement. Got my cousin's ex-wife who is a sweet person to spend a couple of days with my dad. He's a terrible flirt and rarely has issues with women helping him (except for bathing...) Thurs. I got out for a few hours and Fri. we had a small group go to the Auto show in Detroit and dinner at our favorite Greek restaurant. A nice day away, but I was too tired to really enjoy it.

We both slept late today and when he go up he was moving even slower than usual. Very weak. Got him downstairs and he was shaking so much he could not hold his coffee. This was new. Debated and decided it was a good reason to get him to the hospital. Spent 10 hours there, requested and got a CT Scan. Turns out he was a little dehydrated and has a compression fracture of the L2 vertebrae. So all the pain he has been going through for the past month can be attributed to that. If they would have done the CT originally we might have been further ahead. Game plan is a few days in the hospital and possibly longer for rehab. Which is what I wanted originally.

I guess you have to play the game, they make the rules though. He has to suffer because the rules are the rules.