# Count your blessings, this is not happening to you.



## Russell Williams (Nov 25, 2010)

The further adventures and misadventures of Louise Wolf.

As some of you may remember, Louise went into hospital around September 27. From there she went to the nursing home to rebuild her strength so that she could return home. She had rebuilt her strength but then developed a urinary tract infection that went systemic and put her into the hospital in a coma and on a respirator. Eventually she came out of the coma, off the respirator and was ready to go to the nursing home to rebuild her strength. Then she developed a C diff infection which apparently kills about one out of every 10 people that get it. She survived the C diff infection and after 20 days in the hospital was sent back to the nursing home.

She could no longer stand up on her own and will not be able to leave the nursing home until she can do so. It is been a constant battle to get her physical therapy. Originally the staff maintained that it took five people using a hoist to get Louise in and out of bed and that it took a long time to round up five people. Therefore Louise frequently missed physical therapy. Sometimes when she went to physical therapy she was sent to occupational therapy. As best I could tell, in occupational therapy, they want to determine if she could tell the difference between red and green blocks and between round and square blocks and put the round and square blocks into the appropriate holes. My position was that color discrimination was not what was necessary to get her home.

She was getting some strength back and then came down with another C diff infection and a urinary tract infection. That caused her to be flat on her back for about four days. Finally she was put back in her wheelchair, ate lunch, and went back up to get her insulin dosage. It took her an hour before anyone would give her insulin dosage by that time it was too late for physical therapy that day. The next day she almost made it to physical therapy but somebody came and got her to take her back up so that she could get her antibiotic injection. By the time she got to physical therapy it was too late. Now because she has missed five days in a row she will not be allowed to have any physical therapy until Monday because she has been missing too many days. At this rate she will never get out of the nursing home. Starting January 30 she will have to start paying $10,000 a month to stay in the nursing home. Once she has used up all of her resources then they can start going through my resources. I'm not sure how many resources they will allow me to keep.

I tend to push hard for people to give her her insulin shots quickly and to get her to physical therapy. Louise is not as confrontational as I am and is somewhat embarrassed by my activism on her part. My position is that the worst they are likely to do is not allow her to come to physical therapy and that is what is already happening. Count your blessings.


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## pani (Nov 25, 2010)

So sorry this is happening. Keep on being an activist. The medical system in this country is seriously dysfunctional.


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## Russell Williams (Nov 26, 2010)

The great thing is that a beautiful, big, sexy, brilliant, woman has invited me to lunch. It is somewhat sad that the location is the dining hall of a local nursing home.

Yours truly,

Russell Williams


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## Russell Williams (Nov 26, 2010)

The luncheon date has been canceled. It is now 11:30 AM and the hospital staff is not yet gotten Louise out of bed. There is no assurance that they will get her out of bed anytime soon. Therefore she has called me and canceled the luncheon date. I have been invited to have supper with a beautiful woman but there is no assurance that they will have her out of bed by supper time and they tell me that since I am not properly trained I'm not allowed to use the lift and get her out of bed.

Meanwhile, while she is laying in bed she is not, even on her own, doing the exercises necessary to be able to stand up and until she can stand up she cannot leave the nursing home and the longer it goes without her standing up the less likely it becomes that she will ever stand up again.

Louise is much more accepting of such situations that I am. Her position seems to be that it is better to lay in bed all day then have a confrontation that results in her getting out of bed. Since she is a strong powerful and independent woman I am not going to be able to change her mind if she has decided that inaction is the best course of action.


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## Brenda (Nov 26, 2010)

Russell,

You need to have her switched to a different facility. She will not get well here. 

Best of luck,

Brenda


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## EtobicokeFA (Nov 26, 2010)

Sorry you are running into some many hurdles. Keep on being an activist, and hope you get some good luck soon.


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## Webmaster (Nov 26, 2010)

Sounds like this nursing home is trying very hard to make sure this patient doesn't get away and they can start collecting those $10k per month. Sad to see that healthcare is rapidly devolving into some sort of modern-day treasure hunting industry.


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## cinnamitch (Nov 26, 2010)

Russell,
You need to take photos of Louise that have the day and and time marked on them. Take them when she is still in the bed awaiting therapy, document how long she waits. The same with the insulin. When you have these in hand you need to talk to the State board which regulates nursing homes. Tell them exactly what you told us here and let them know you have proof. Tell your physician what is going on and tell him that she is missing therapy due to their negligence. 
I agree with the other poster in that you really need to find another home for her if you can. I know that is easier said than done but i would really look into it. 







Russell Williams said:


> The luncheon date has been canceled. It is now 11:30 AM and the hospital staff is not yet gotten Louise out of bed. There is no assurance that they will get her out of bed anytime soon. Therefore she has called me and canceled the luncheon date. I have been invited to have supper with a beautiful woman but there is no assurance that they will have her out of bed by supper time and they tell me that since I am not properly trained I'm not allowed to use the lift and get her out of bed.
> 
> Meanwhile, while she is laying in bed she is not, even on her own, doing the exercises necessary to be able to stand up and until she can stand up she cannot leave the nursing home and the longer it goes without her standing up the less likely it becomes that she will ever stand up again.
> 
> Louise is much more accepting of such situations that I am. Her position seems to be that it is better to lay in bed all day then have a confrontation that results in her getting out of bed. Since she is a strong powerful and independent woman I am not going to be able to change her mind if she has decided that inaction is the best course of action.


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## Cynthia (Nov 26, 2010)

Russell, 

Have you contacted the Long-Term Care Ombudsman office for your county? If I remember correctly, you live in MD. See below for a national site that explains what they do, along with county contacts for what I think is your state.

National Long-Term Care Ombudsman Resource Center
http://www.ltcombudsman.org/about-ombudsmen

Maryland Dept. of Aging (Scroll down for LTCO.)
http://www.mdoa.state.md.us/senior.html

The long-term care planning clearinghouse linked below is managed by the U.S. Administration on Aging. It may lead you to information resources about nursing home payment. 
http://www.longtermcare.gov/LTC/Main_Site/index.aspx

I hope this helps.

~ Cynthia


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## Russell Williams (Nov 26, 2010)

The problem is if Louise does not want me to do these things and Louise is worried that I will upset staff members. She can have me banned from the nursing home. I agree with what people are saying, but of the suggestions mentioned that I have suggested to Louise Louise does not agree with any of them. The only one she tolerated was when I went and volunteered to help lift her into bed. A friend of mine and I were sitting with Louise for about an hour and Louise was in great pain and waiting to be lifted into bed. My friend said she would not have tolerated such a situation nor what I have tolerated such a situation but Louise did not want me roaming the halls trying to find someone who could get her into bed. Each of us is different and Louise has her mental facilities and can control her patient care. If she chooses not to try to effectively battle against what is being done to her but rather, peacefully wait until things get better there is not much that I can do about that. Her daughter has told her that she should more effectively battle against the treatment she is getting. A good friend has called her up and told her that she should battle against the mistreatment she is getting. Louise listens to them but does not ask me to do something. It frustrates me.


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## Russell Williams (Nov 26, 2010)

Webmaster said:


> Sounds like this nursing home is trying very hard to make sure this patient doesn't get away and they can start collecting those $10k per month. Sad to see that healthcare is rapidly devolving into some sort of modern-day treasure hunting industry.



that it does not appear that they are in any hurry to get Louise out of the place. Whether the fact that they have empty beds means that they prefer to have Louise there and social security and insurance paying money rather than have another empty bed I do not know.


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## CastingPearls (Nov 26, 2010)

Russell, I hear your frustration loud and clear. I feel for Louise and I feel for you.

At one time I was hospitalized and needed to be lifted up be several people, had horrible staph, etc. and the whole situation was so depressing. I could see why Louise would rather not make waves or disturb anything or anyone. I can see why you're in so much pain too to see her in this state and feel so helpless.

My thoughts and prayers are with you both.


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## Brenda (Nov 26, 2010)

What I did when it was my loved one in this situation was be by her side constantly and bring gifts to the staff. Being at her side will get her better treatment and bringing in gifts to the staff works too. Bring in donuts, candies, lunch etc for the staff to enjoy and they will find the time for her. By doing these things you will get her better treatment and still respect her wishes about not making waves.


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## Forgotten_Futures (Nov 27, 2010)

There has to be something in the legal system you can use to counter this bullshit without impugning on the wishes of your friend/loved one (I am not sufficiently familiar with you as a member to know which is correct and it has not been stated in this thread so I am taking liberties = P).

If that isn't possible... you might be able to prove that she does not, in fact, have sufficient mental faculties to choose her own care, seeing as her choice is to not be cared for (properly).

And if that's not an option, than just sit outside with placards and let the local news station(s) do the work for you = P


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## Russell Williams (Nov 27, 2010)

CastingPearls said:


> Russell, I hear your frustration loud and clear. I feel for Louise and I feel for you.
> 
> At one time I was hospitalized and needed to be lifted up be several people, had horrible staph, etc. and the whole situation was so depressing. I could see why Louise would rather not make waves or disturb anything or anyone. I can see why you're in so much pain too to see her in this state and feel so helpless.
> 
> My thoughts and prayers are with you both.



I thank you for your kind words of comfort, understanding, and support.


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## Russell Williams (Nov 27, 2010)

Brenda said:


> What I did when it was my loved one in this situation was be by her side constantly and bring gifts to the staff. Being at her side will get her better treatment and bringing in gifts to the staff works too. Bring in donuts, candies, lunch etc for the staff to enjoy and they will find the time for her. By doing these things you will get her better treatment and still respect her wishes about not making waves.




I had not thought of this approach. It is an interesting one and I will start thinking about how to carry it out. If I manage to do it it could produce two results. One my wife would get better treatment, which is the desired consequence. Two, might also be the possible, unintended, but not undesirable, consequence of the mostly female staff getting larger.


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## Fat Brian (Nov 27, 2010)

I've been through this with my wife's grandfather and do sympathize. I also have to second Brenda's suggestion, the staff can be an ally or enemy, and getting them on your side will make a huge difference in her care. If donuts and goodies are hard to get in the building try cash, tip the staff like any other serving attendant but try to keep it quiet from the higher ups. Its sad that it comes to that but most people in these places are not paid very well and you can give them some extra insensitive to look out for her.


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## cinnamitch (Nov 27, 2010)

Realistically, all the gift and monetary stuff will do is make them treat her like gold WHILE YOU ARE THERE. When you are not there it will be same ol same ol. You have to be polite but firm about what you expect from them and that is the care she needs to recover. If Louise will not let you talk, then as long as she is her own guardian, there is not a lot you can do. I just want you to realize that all the gift giving accomplishes is a false sense of security for you when in reality it won't accomplish anything. As someone who has worked in this field for many many years if you have to bribe staff to take care of your loved one, then that place needs to be investigated. I have no idea what they pay nursing assistants there but nursing assistants in Minneapolis make around 14 dollars an hour with experience. No you wont be getting rich but its well above minimum wage,


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## D_A_Bunny (Nov 28, 2010)

I am very sorry that Louise is having this problem and hope that she will feel better and be treated better soon.

I can say this. My dear friend's father was just put into a nursing home facility. He has an ongoing wound and it gets disrupted with movement. Because of that he was refusing physical therapy. They had to threaten to throw him out if he didn't do it because if they don't perform therapy every day then medicare will not pay them.

I find it very odd that they are not consistently making sure that 1) her insulin is being delivered promptly (as that could lead into a very serious condition) 2) if she has/has c.diff, they need to treat her vigorously with proper and timely medication and 3) how are they justifying their fees if they are not actually taking care of her and helping her to get better.

Obviously you need to consider her feelings and wishes, but Russell this is one time that being a patient advocate is the best thing to be. Perhaps you need to (by yourself or with a friend or family member) research the possibility of a better location for her. There are websites online that do independent ratings of these facilities and it is possible that the current facility is not up to proper standards.

Personally, I expect them to do their jobs. I am very patient and very friendly, as a patient or a loved one. However, I could never let them NOT do the job necessary to help the patient get better sooner rather than later.

Russell, please reach out if you are feeling overwhelmed. There are many people online and in your vicinity that can help you to make this situation better. Ultimately Louise's health is the main concern and you should not be made to think or feel that you have no say in the matter.

I am sending best wishes and prayers for a speedy and positive outcome to her stay away from home.


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## Cynthia (Nov 28, 2010)

To follow up on D_A_Bunny's post, the federal "Nursing Home Compare" site is the most reputable source of nursing home comparison measures. That website section's server isn't working correctly tonight, but here's the URL:

HHS Center for Medicare & Medicaid Services (CMS)
*Nursing Home Compare*
http://www.medicare.gov/nhcompare/

And if you should ever need federal comparison data for home health agencies, it's here:
*Home Health Compare*
http://www.medicare.gov/homehealthcompare/search.aspx


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## Russell Williams (Nov 29, 2010)

Yesterday we were to have dinner together. At about 2 she called me to tell me that the whole floor has been quarentined. A lot of the people on the floor have upset tummys, nausia, and diarahhea. Today the admisistrators are to decide what to go about the situatuion. As of last night Louise was not affected. 

Getting old is a bitch but so far for Louise the alturnative is worse.

Russell Williams


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## graphicsgal (Nov 29, 2010)

My thoughts are with you. Keep fighting the fine fight.


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## Russell Williams (Dec 4, 2010)

I think the nurse just pulled an end run around the doctor. Saturday December approximately the fourth 2010.

In the hospital Louise developed C diff. The hospital put her in isolation and finally brought it under control. After was under control they shipped Louise to a nursing home and Louise had the understanding that she would continue on the C diff antibiotic for 20 days. The nursing home said they had no such orders and stopped her C diff antibiotic. Within about a week the C diff infection came back. The doctor ordered antibiotic for Louise's C diff and for it to be continued for several days. I suggested to the nurse that the C diff antibiotic be continued for longer. The nurse told the doctor and the doctor ignored her. The C diff went away, the antibiotic was stopped, and now Louise is sick again and probably with C diff. This morning Louise's temperature has gone from about 97 to now something over 101. Louise called me and put me on the phone with the nurse. The nurse explained that the doctor had ordered that samples of Louise's bowel movement and urine be sent to the lab and when the lab results came back in 24 hours or so a decision could be made as to what Louise had and what if any antibiotics should be used.

I pointed out to the nurse at the last time Louise's temperature and started going up the doctor said that if Louise's temperature went over 101 she should be sent to the hospital. The nurse explained that that was last time and that the doctor had given no such order this time. The nurse explained that she could not send Louise to the hospital without a doctor's order however if Louise felt she should go to the emergency room that it was out of the nurse's hands. I commented, "Ship her the hell out of here and do it by 911!"

Two different people have told me that in talking to Louise it sounds like she has given up and become resigned to her fate. Therefore I have decided that I must stop trying to get Louise's permission before I take steps to try to get a reasonable treatment and instead must do things without her permission and in many cases without her knowledge. I am not happy about this.

I called the nursing home back and they said that yes they had called for an ambulance but not as an emergency and that they would only call it as an emergency if Louise had breathing difficulties. After I finish this I will make a phone call and if Louise is still on the nursing home I will suggest that she start gasping for breath in doing so very loudly. Based on previous experience she may already be gasping for breath and not as part of her own free choice. I ain't happy.

The fact that I am sick does not make things any easier.


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## Russell Williams (Dec 5, 2010)

If people have comments for improvement I would be interested in hearing them.



An outline of the situation with Louise Wolf.
To be presented to the staff of the Golden Age Nursing Home


Note 1 "Insanity  repeatedly doing the same thing and expecting that 'this time' there will be a different result."


The following information is true to the best of my memory.


I. Major goal for patient Louise Wolf. To get her back home.


A. Situations that must occur before Louise Wolf is able to go home.
1. Louise Wolf must be free of bacterial infection


2. Louise Wolf must be able to stand, using a walker walk 20 feet, and go up and down three steps.


B. Are these goals achievable?



1. Apparently the goal of making Louise free of bacterial infection is not attainable if current procedures dealing with the bacterial infections are repeated over and over. In late October when Louise returned from the hospital, as best I remember, the hospital people said she would be on the C diff antibiotic for at least 20 days so that they could be sure the C diff was eliminated or at least under control in her intestinal tract. Here, at the Golden Living Nursing Home we were told they were no orders for antibiotics for C diff and that she no longer had C diff. In time Louise developed another C diff infection. I suggested that the C diff antibiotic should continue for longer period of time. I was told that that suggestion was made to the doctor and the doctor did not write such an order. Louise then proceed to get her third C diff infection. If the C diff antibiotic is stopped in the very near future is there any reason to think that she will not shortly get her fourth C diff infection? If one out of 10 people with C diff. die what is the death rate for people that get C diff four times in a row? See note 1.



2. The physical therapy goal is probably attainable  in early October Louise had achieved the goals of standing, walking, and going up four steps. She was expecting to be discharged but then the bacterial infections started. It is possible that Louise could no longer reach these goals but so far no serious attempt has been made to see if Louise can reach them. I define a serious attempt as making sure that, on every workday that Louise is not running a fever, Louise gets to physical therapy at least once a day during the workweek. Getting Louise to physical therapy should take precedence over the difficulty in finding people to get her out of bed, deciding that physical therapy time is a convenient time to give her insulin, or saying that an antibiotic injection can only be done during physical therapy time.


C. What can be done to make it more likely that these goals will be achieved?


1. Train the nursing staff on reduced manpower use of the lift.


a. Determine the minimum number of people needed to use the lift to get Louise in and out of bed. There are some staff members who insist that Louise cannot be moved until there are five people there. Other staff members do it as individuals. Once the minimum number of staff members needed is determined then staff members working on that floor must be trained and how to effectively use the lift on Louise. When physical therapy time is approaching the 5 to 7 min. that it takes one, or at the most two people to get Louise out of bed and into the wheelchair must be a high level priority. After physical therapy getting her back into bed does not need to be as high a priority but if there is not time for couple of hours to move her from the wheelchair to the bed then there should at least be time for one staff member to give her a painkiller to hold her over until she can be moved from the wheelchair into the bed. As soon as enough physical therapy has been done so that she can get out of bed and into the wheelchair on her own this manpower need will be eliminated. Therefore staff members who point out that it is inconvenient to get Louise out of bed for the physical therapy can be told that the faster Louise is able to get out of bed on her own the sooner the inconvenience of lifting her will be removed from their work schedules.


II. Minor goals for Louise Wolf.


A. To get the shunt out of her urinary tract. The doctor says that the nurses can and should do this. The nurses say that they must follow the doctor's orders and that in this case, they are not going to do what the doctors told them to do because only the doctor can do it. In the middle of all of this someone saw a string and decided it must be a leftover stitch from Louise's uterine cancer operation. By ambulance Louise was sent to the hospital to a gynecologist who looked at the string and decided it was coming out of Louise's urinary tract. The gynecologist said "that's not my department" and Louise was sent back by ambulance to the nursing home. I define this is an expensive wild goose chase. Meanwhile the shunt is still in her urinary tract. Someone needs to pull Louise's string


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## Surlysomething (Dec 5, 2010)

Russell Williams said:


> Note 1 "Insanity  repeatedly doing the same thing and expecting that 'this time' there will be a different result."



I'm curious why you post all this stuff here but don't participate in any of the other threads. Would this not be better suited to a health forum?


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## Russell Williams (Dec 5, 2010)

Surlysomething said:


> I'm curious why you post all this stuff here but don't participate in any of the other threads. Would this not be better suited to a health forum?



I gather that you were not around for or do not remember my many "daily chair activism posts". 


As far as where it is posted, "the man who pays the fiddler calls the tune." If the moderator decides this is the wrong place moderator will either move it or eliminate it.

I do not consider this to be participating in a health discussion. If there was a form that said, "beware, this could happen to you!" That might be a more appropriate forum to put it on.

Russell Williams  trying to be a Louise Wolf activist.


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## Surlysomething (Dec 5, 2010)

Russell Williams said:


> I gather that you were not around for or do not remember my many "daily chair activism posts".
> 
> 
> As far as where it is posted, "the man who pays the fiddler calls the tune." If the moderator decides this is the wrong place moderator will either move it or eliminate it.
> ...




No, I don't remember your "daily chair activism" posts. And who is Louise Wolf? I'm just trying to figure out the purpose of this thread and it seems health centered. I doubt you're going to get any replies here for the types of questions you're asking.


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## DeniseW (Dec 5, 2010)

Russell, your post is fine right where it is, don't worry about it and keep fighting the good fight, I hope Louise gets better and gets out of there....


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## Russell Williams (Dec 12, 2010)

Surlysomething said:


> No, I don't remember your "daily chair activism" posts. And who is Louise Wolf? I'm just trying to figure out the purpose of this thread and it seems health centered. I doubt you're going to get any replies here for the types of questions you're asking.



for about 10 years. Louise was a member of the Board of Directors of NAAFA. For one of those years. She was, I believe it was called, president of NAAFA. She was the main organizer of Fat Works One, Fat Works to, and one of the main organizers of Fat Works Three. For about 10 years she was one of the participants and actresses in fat lip readers theater. At one time she was one of the top 30 Scrabble players in North America. She spent two years in the Peace Corps, climbed Mount Kilimanjaro, stood in the Taj Mahal in the moonlight, and hiked through the Himalayas. She did a single parent adoption. She is a published author. Many people on this board know much of that and some know all of that. People who know Louise well and love her worry about her and pray for her and provide me with sources of information for her. Information that helps improve her life. For an example see the following post of mine.


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## Russell Williams (Dec 12, 2010)

Louise is doing better.

Yesterday, with an assist from me, she was able to stand up. In the past six months or so her life increasingly became less pleasant because her pain levels were so high. Louise did not want to take any morphine-based pain medication because she feared addiction. A couple of nights ago LM called to talk to me about a number of things related to Louise. In the course of the conversation LM pointed out that taking the minimal amount of morphine-based medication is a long ways away from people who are psychologically addicted to morphine-based medication. LM explained that she knows someone who, because of bone complications has a lot of pain. This person was started on morphine-based pain medication and the dosage was increased to the point where the background pain level was fairly minimal. According to LM this person has not had an increase in her pain medication for the last four years or so.

About a week ago, Louise was started on regular morphine-based pain medication. Saturday I asked Louiise what her baseline pain level was before the medication started. Louise told me that on the scale of 0 to 10 her background pain level was normally an eight. Saturday, after having been on the pain medication for about five days Louise told me that her background pain level was about four. This morning Louise told me that her background pain level was minimal and this evening Louise told me the same thing.

So in summary Louise has started standing and she is no longer constantly in a very high level of pain. I hear the joy of life coming back into her voice.


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## Fat Brian (Dec 12, 2010)

Its amazing what a little morphine will do.


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## Russell Williams (Dec 12, 2010)

Surlysomething said:


> No, I don't remember your "daily chair activism" posts. And who is Louise Wolf? I'm just trying to figure out the purpose of this thread and it seems health centered. I doubt you're going to get any replies here for the types of questions you're asking.



best I can tell this was written by Louise Wolfe.http://www.grandstyle.com/dietstart.htm


another mention of Louise's correspondence that is in a collection
http://doddcenter.uconn.edu/findaids/Mayer/MSS19900057.html

. Louise Wolfe as one of the leaders in a panel discussion at a NAAFA convention
http://world.std.com/~naafa/events/convention.html


I do not know how much of this Louise wrote but she is listed at the bottom.

http://kimkinsdiettruth.blogspot.com/2008/02/in-honor-of-natonal-eating-disorder.html


http://www.eskimo.com/~largesse/Archives/herstory.html
Back in the U. S., with the help of attorneys from a Center for Independent Living in California, fat activists Louise Wolfe and Judy Freespirit pioneer the concept of using federal disability legislation to redress weight discrimination, and successfully pressure their state to define a policy of accepting such cases.



And a picture of Louise Wolf


http://picasaweb.google.com/lh/photo/xGm6k0-TEHvpN0ag_4pU1w


a link to some of the achievements of Louise Wolf in Toastmasters

http://www.highspiritstm.com/page1.html


hopefully some of this helps answer your question of, who is Louise Wolfe?


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## Surlysomething (Dec 12, 2010)

Russell Williams said:


> best I can tell this was written by Louise Wolfe.http://www.grandstyle.com/dietstart.htm
> 
> 
> another mention of Louise's correspondence that is in a collection
> ...




Gotcha. I've just never seen her post here and you talk about her in some strange, otherworldy way.


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## Russell Williams (Dec 13, 2010)

It was Louise Wolfe and many others working together and fighting the psychological establishment that keeps you from being defined as crazy simply because you are fat. 

"Three years after the FLF's confrontation with psychologist Judith Rodin over her remarks to the American Psychiatric Association, that organization rescinds its classification of obesity as a mental disorder. This year's edition of the Diagnostic and Statistical Manual of Mental Disorder declares that "Simple obesity is...not generally associated with any distinct psychological or behavioral syndrome." 


Another reason for Louise getting well is there is still work to be done in fighting discrimination. Louise wants to be strong enough to make the church she attends a welcoming church which will mean that homosexual couples are welcomed in the church. It was very difficult for her to accomplish such a thing with the cancer, the heart attack, and a pain level of 8 out of 10.

However, she just called, she's out of bed, in her wheelchair, waiting physical therapy, and the joy of living is back in her voice.


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## Surlysomething (Dec 13, 2010)

I'm glad she's doing better.


But I don't know why you post the way you do, it's so strange.


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## graphicsgal (Dec 14, 2010)

I am happy to hear she is doing better.


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## ssflbelle (Dec 15, 2010)

So happy to hear that Louise is doing better with the morphine. For her to have some life back in her voice is wonderful as well. Hopefully she will be walking better and continue with her activism in 2011. Maybe you can convince my Dr that I too would be able to walk with morphine.


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## MissStacie (Dec 15, 2010)

Surlysomething said:


> I'm glad she's doing better.
> 
> 
> But I don't know why you post the way you do, it's so strange.



Why on EARTH would you post such mean things?? He's answered YOUR questions, now why don't you respect him and Louise by just leaving this thread alone?

We all talk about our SO's in a special way, this is his, so either read and respect or don't read at all.


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## Surlysomething (Dec 15, 2010)

MissStacie said:


> Why on EARTH would you post such mean things?? He's answered YOUR questions, now why don't you respect him and Louise by just leaving this thread alone?
> 
> We all talk about our SO's in a special way, this is his, so either read and respect or don't read at all.


 

I wasn't mean at all. And his way of talking isn't in a special way, it's in a weird way. We're all entitled to our opinion just like you've voiced yours here. If you haven't figured that about a forum online, I don't know what to tell you. Haha.


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## Webmaster (Dec 15, 2010)

Surlysomething said:


> Gotcha. I've just never seen her post here and you talk about her in some strange, otherworldy way.



This can happen when members of an organization or group talk about their history and those whom they admire: to outsiders those names may mean nothing. Most who belonged to NAAFA in its heydays (85 to 95) know Louise Wolf as a strong, passionate, caring, intellectual leader and compass who also served as NAAFA's chairperson of the board. Russell himself was a board member for many years, and his popular Daily Activism caused many to rethink priorities and face uncomfortable truths.


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## TraciJo67 (Dec 15, 2010)

Webmaster said:


> This can happen when members of an organization or group talk about their history and those whom they admire: to outsiders those names may mean nothing. Most who belonged to NAAFA in its heydays (85 to 95) know Louise Wolf as a strong, passionate, caring, intellectual leader and compass who also served as NAAFA's chairperson of the board. Russell himself was a board member for many years, and his popular Daily Activism caused many to rethink priorities and face uncomfortable truths.


 
I would add that it should be obvious that Louise is grieviously ill, and that Russell is doing his best to ensure that she recovers or at least that her wishes and instructions are followed. I don't personally care HOW he is conveying the message; that he and Louise are suffering is plainly obvious, and if you can't say something supportive ... why not keep your piehole shut?

ETA: Russell, I wish you and Louise the very best. Best wishes for a positive outcome in time for Christmas.


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## Surlysomething (Dec 15, 2010)

Webmaster said:


> This can happen when members of an organization or group talk about their history and those whom they admire: to outsiders those names may mean nothing. Most who belonged to NAAFA in its heydays (85 to 95) know Louise Wolf as a strong, passionate, caring, intellectual leader and compass who also served as NAAFA's chairperson of the board. Russell himself was a board member for many years, and his popular Daily Activism caused many to rethink priorities and face uncomfortable truths.


 

I understand this, now. But without some back story to it, it seemed like a very strange thing to write about. I'm sorry that my confusion offended people in the "movement" but how you say things is pretty important if you want to get your message across.

And I DO hope she gets well and have also mentioned that. You haven't seen the privae messages i've received from Russell with the numerous links etc about her history. If this backstory was mentioned out in the open it would have made a lot more sense to me. But the rambling posts are confusing to people that aren't a part of the history of size acceptance.


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## Russell Williams (Dec 15, 2010)

The following is probably long and boring to those who are not particularly interested in the progress of Louise Wolf. I present it for those who would like to be kept up to date.


The weekend before last I decided I had to organize my thoughts and present the problems to the staff. I tried to make sure that the problems were presented in an organized fashion and, where possible, suggest the solution to each of the problems mentioned.

That weekend I created the following. I also attached to it an article from a scientific journal describing the standard of care for repeated C diff infections. I created three packets which included the suggested treatment protocol I had created plus the suggested C diff treatment protocol presented in a scientific journal.

I presented the packets to the head of the nursing home, the senior nurse, and the physical therapy staff.

*An outline of the situation with Louise Wolf.
To be presented to the staff of the Golden Age Nursing Home*​
Note 1 "*Insanity*  repeatedly doing the same thing and expecting that 'this time' there will be a different result."

The following information is true to the best of my memory.

I. Major goal for patient Louise Wolf. To get her back home.

A. Situations that must occur before Louise Wolf is able to go home.
1. Louise Wolf must be free of bacterial infection

2. Louise Wolf must be able to stand, using a walker walk 20 feet, and go up and down three steps.


B. Are these goals achievable?


1. Apparently the goal of making Louise free of bacterial infection is not attainable if current procedures dealing with the bacterial infections are repeated over and over. In late October when Louise returned from the hospital, as best I remember, the hospital people said she would be on the C diff antibiotic for at least 20 days so that they could be sure the C diff was eliminated or at least under control in her intestinal tract. Here, at the Golden Living Nursing Home we were told they were no orders for antibiotics for C diff and that she no longer had C diff. In time Louise developed another C diff infection. I suggested that the C diff antibiotic should continue for longer period of time. I was told that that suggestion was made to the doctor and the doctor did not write such an order. Louise then proceed to get her third C diff infection. If the C diff antibiotic is stopped in the very near future is there any reason to think that she will not shortly get her fourth C diff infection? If one out of 10 people with C diff. die what is the death rate for people that get C diff four times in a row? See note 1.


2. The physical therapy goal is probably attainable  in early October Louise had achieved the goals of standing, walking, and going up four steps. She was expecting to be discharged but then the bacterial infections started. It is possible that Louise could no longer reach these goals but so far no serious attempt has been made to see if Louise can reach them. I define a serious attempt as making sure that, on every workday that Louise is not running a fever, Louise gets to physical therapy at least once a day during the workweek. Getting Louise to physical therapy should take precedence over the difficulty in finding people to get her out of bed, deciding that physical therapy time is a convenient time to give her insulin, or saying that an antibiotic injection can only be done during physical therapy time.

C. What can be done to make it more likely that these goals will be achieved?

1. Train the nursing staff on reduced manpower use of the lift.
a. Determine the minimum number of people needed to use the lift to get Louise in and out of bed. There are some staff members who insist that Louise cannot be moved until there are five people there. Other staff members do it as individuals. Once the minimum number of staff members needed is determined then staff members working on that floor must be trained and how to effectively use the lift on Louise. When physical therapy time is approaching the 5 to 7 min. that it takes one, or at the most two people to get Louise out of bed and into the wheelchair must be a high level priority. After physical therapy getting her back into bed does not need to be as high a priority but if there is not time for couple of hours to move her from the wheelchair to the bed then there should at least be time for one staff member to give her a painkiller to hold her over until she can be moved from the wheelchair into the bed. As soon as enough physical therapy has been done so that she can get out of bed and into the wheelchair on her own this manpower need will be eliminated. Therefore staff members who point out that it is inconvenient to get Louise out of bed for the physical therapy can be told that the faster Louise is able to get out of bed on her own the sooner the inconvenience of lifting her will be removed from their work schedules.


II. Minor goals for Louise Wolf.

A. To get the shunt out of her urinary tract. The doctor says that the nurses can and should do this. The nurses say that they must follow the doctor's orders and that in this case, they are not going to do what the doctors told them to do because only the doctor can do it. In the middle of all of this someone saw a string and decided it must be a leftover stitch from Louise's uterine cancer operation. By ambulance Louise was sent to the hospital to a gynecologist who looked at the string and decided it was coming out of Louise's urinary tract. The gynecologist said "that's not my department" and Louise was sent back by ambulance to the nursing home. I define this is an expensive wild goose chase. Meanwhile the shunt is still in her urinary tract. *Someone needs to pull Louise's string* 

In the last week and a half all of this treatment protocol is either being done or has been finished.


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## Russell Williams (Dec 15, 2010)

I do not know what the future holds but this is the current situation.

One.) Pain reduction  through this summer and this fall Louise's background pain level was an eight on a 1 to 10 scale. Now, with regular administration of more effective pain killer Louise tells me that her background pain level runs between two and three. She finds life more enjoyable when she is not constantly in rather intense pain.

Two.) By ambulance Louise was taken to a hospital where a nurse looked at her, pulled her string, solved the problem, and sent her back by ambulance.

Three.) It has been decided to follow my suggestion of the treatment protocol for C diff. For the next two months Louise will be on a slowly decreasing course of antibiotics. It is hoped that this will prevent the return of C diff.

Four.) The staff has been trained in effective use of the device that lifts Louise from the bed to the wheelchair and from the wheelchair to the bed. It has been pointed out to the staff that it is a very high priority to get Louise from the bed to the wheelchair and to physical therapy on time. Louise has been going to physical therapy every single weekday and on Saturday she and I together did some of the physical therapy exercises. With help Louise has been standing up every day, for the last four days. Today she was able to stand for two sessions, one of about 5 min. and another one of about 8 min.

Five.) Saturday, being free from pain, she asked me to play some card games with her. She was well enough and alert enough so that when we played a total of 10 hands of two different card games she won nine of the hands. I won the last hand and it may have been because she was taking pity on me.

Six.) It will be a near run but there is at least the possibility that she can be home by Christmas.


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## Fat Brian (Dec 15, 2010)

Well Russell, ya done good. It sounds like you may have turned the corner with the staff and doctors.


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## Cynthia (Dec 16, 2010)

Russell, the work that you're doing is fantastic. I hope that Louise gets out soon. 

If Louise considers herself to have a physical disability of any kind, the Olmstead Decision may be useful leverage as you advocate for a transition to home placement. Essentially, it requires that states enable people with disabilities to receive care in the least restrictive setting possible. While Louise's condition may be currently too severe for her to receive treatment outside the nursing home, it appears that it may improve, making home care a feasible goal.

Here are a few links that may be helpful. (I don't currently live in the Mid-Atlantic area, but it appears that MD uses an alternative to a state Olmstead plan. It's in the last link.)

HHS &#8211; Olmstead (official federal info)
http://www.hhs.gov/ocr/civilrights/understanding/disability/serviceolmstead/index.html

West Virginia &#8211; Olmstead (excellent short basic overview)
http://www.wvdhhr.org/bhhf/olmstead/default.htm

Virginia &#8211; One Community: The Olmstead Initiative (very comprehensive)
http://www.olmsteadva.com/

Center for Personal Assistance Services (PAS) &#8211; (has MD Olmstead info)
http://www.pascenter.org/state_based_stats/olmstead_home.php?state=maryland

Related Note: Maryland has an ADRC (Aging and Disability Resource Center) that's called "Maryland Access Point."


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## Russell Williams (Dec 16, 2010)

no messages, just gratitude


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## Jes (Dec 16, 2010)

Surlysomething said:


> But the rambling posts are confusing to people that aren't a part of the history of size acceptance.



agreed. Perhaps this conversation derails russell's updates, but i don't want you out there alone, flapping in the breeze, surly. i hear you. Sounds to me like Louise has done a lot for the movement, but '85-'95 marks a time period when some Dimmers weren't even alive! It's not surprising some people don't know what or who russell is telling us about and using her name again and again, and not saying 'my wife Louise' does make it sound like he's talking about, say, a public figure and not a family member. that's all. no evil intent meant.


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## Surlysomething (Dec 16, 2010)

Jes said:


> agreed. Perhaps this conversation derails russell's updates, but i don't want you out there alone, flapping in the breeze, surly. i hear you. Sounds to me like Louise has done a lot for the movement, but '85-'95 marks a time period when some Dimmers weren't even alive! It's not surprising some people don't know what or who russell is telling us about and using her name again and again, and not saying 'my wife Louise' does make it sound like he's talking about, say, a public figure and not a family member. that's all. no evil intent meant.


 
Thanks for this. It was never my intent to come off as cruel at all..I just didn't get it.

I do hope Louise starts feeling better though, for what it's worth.


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## BigBeautifulMe (Dec 23, 2010)

TraciJo67 said:


> I would add that it should be obvious that Louise is grieviously ill, and that Russell is doing his best to ensure that she recovers or at least that her wishes and instructions are followed. I don't personally care HOW he is conveying the message; that he and Louise are suffering is plainly obvious, and if you can't say something supportive ... why not keep your piehole shut?
> 
> ETA: Russell, I wish you and Louise the very best. Best wishes for a positive outcome in time for Christmas.



Amen. Well said, Traci.


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## BigBeautifulMe (Dec 23, 2010)

Russell Williams said:


> I do not know what the future holds but this is the current situation.
> 
> One.) Pain reduction  through this summer and this fall Louise's background pain level was an eight on a 1 to 10 scale. Now, with regular administration of more effective pain killer Louise tells me that her background pain level runs between two and three. She finds life more enjoyable when she is not constantly in rather intense pain.
> 
> ...



Russell, this is such excellent news. I'm so glad the staff appears to have taken you seriously and listened to you.


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## Miss Vickie (Dec 24, 2010)

Russell Williams said:


> Louise is doing better.
> 
> Yesterday, with an assist from me, she was able to stand up. In the past six months or so her life increasingly became less pleasant because her pain levels were so high. Louise did not want to take any morphine-based pain medication because she feared addiction.



So they haven't suggested any non-narcotic pain relievers for her? There are whole families of drugs that she could take that don't have morphine that work quite well without the risk of addiction. It seems to me that her risk of blood clot from not moving is far greater than her risk of addiction.

Have _*none*_ of her health care providers talked to her about this?



> A couple of nights ago LM called to talk to me about a number of things related to Louise. In the course of the conversation LM pointed out that taking the minimal amount of morphine-based medication is a long ways away from people who are psychologically addicted to morphine-based medication.



While it's true that people can become both physically -- and psychologically -- addicted to pain medication, it's rare in acute situations. Usually it happens for people with chronic conditions and often it's more that they become somewhat resistant to the medications and it takes more and more to work. But that doesn't mean you don't treat someone's pain. Pain is as important a symptom to treat as hypertension, fever, or infection. It must be treated. And in fact the data shows that of people keep their pain under control with reasonable amounts of medication, they use less than those who wait until their pain is out of control and use the meds to "catch up".



> So in summary Louise has started standing and she is no longer constantly in a very high level of pain. I hear the joy of life coming back into her voice.



I'm glad of this but very very sad that the people caring for her have allowed her to be in pain for such a long time. To me, that's unacceptable.


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## Russell Williams (Dec 25, 2010)

A wonderful Christmas present. Today, on her own, Louise was able to get out of her bed and into her wheelchair. She could not yet get from the wheelchair back to the bed but it is a start.

Tomorrow, while the staff is not there, she hopes to try a little bit of walking.

If she does not get another infection, hopefully, she will be able to get out of her wheelchair within a week.

For those who do not know  Louise is my beautiful and beloved and brilliant and talented and gifted wife. She has been a Peace Corps volunteer and, spent one of the two years in the Peace Corps in the village with no other Peace Corps person or staff anywhere nearby. She survived quite nicely thank you.

She is a former, I believe president, of NAAFA. A multi-year member of the Board of Directors of NAAFA. For several years cochairperson with me of the activism committee of NAAFA. She is also the co-writer of several position papers of NAAFA. She Proofread the Declaration of Fat Independence.

She did a single parent adoption and single-handedly raised her daughter to adulthood. I hope that that helps explain to people who do not know who Louise Wolf is. She also has been very active in Toastmasters and assumes several positions of leadership.

Did I mention that she is extremely beautiful and sexy.


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## MissStacie (Dec 26, 2010)

Wonderful news, Russell!

Here is hoping that this is a big step to her recovery and more steps to follow! Happy holidays and the best to both you and Louise!

Stacie and Boris(gnoom)


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## BullseyeB (Dec 26, 2010)

Russell,

All our best to Louise and you! So glad to hear that things are on the upswing!  Here's to a Happy New Year!

Laura/John Baker


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## Russell Williams (Dec 29, 2010)

I must not tire of the battle.

As posted above, over the weekend, twice Louise was able to get out of bed and into the wheelchair on her own. I realized that half of the bed battle was done. WRONG!!!.

Physical therapy likes Louise to get there between 10 AM and 10:15 AM in the morning. Yesterday morning, after eating her breakfast she decided to take a short nap. Instead of waking about 15 of 10 AM she woke up at 10 after 10 AM. She immediately pressed the button so that a staff member could bring into reach her walker and her wheelchair. 15 min. later a staff member came. Louise asked for the walker and the wheelchair. The staff member explained that physical therapy had not written anything saying that Louise was allowed to get out of bed on her own. The staff member explained that Louise needed more physical therapy before she would be able to get out of bed on her own. Therefore Louise would have to be put on the lift and lifted out. Louise was not happy but said all right go ahead and lift me out. The staff member explained that it took three people to use the lift. Louise explained that time after time one person had been able to use the lift and get her out of bed. The staff member did not accept that and said that she would go find two other people.

It is now about 10:35 AM. It took a little over a half an hour for the staff member to find two other staff members and all three of them to come back and get Louise out of the bed and into the wheelchair. It is now about 11:15 AM and too late for Louise to go to physical therapy.

I told Louise that I need to get there by 9:45 AM this morning. Louise does not like to annoy people and told me that there was no need for me to come. I fully expect to be there with boldfaced copies of the following paragraph. I plan to tell Louise she has two choices, either let me put the walker in the wheelchair next to her bed or I will wander the halls continually asking people how soon they can get her into the wheelchair so she could go down to physical therapy. Louise will not be happy and I will be doing this against her wishes but it is in accordance with the wishes of her brother and her sister.

*a. Determine the minimum number of people needed to use the lift to get Louise in and out of bed. There are some staff members who insist that Louise cannot be moved until there are five people there. Other staff members do it as individuals. Once the minimum number of staff members needed is determined then staff members working on that floor must be trained and how to effectively use the lift on Louise. When physical therapy time is approaching the 5 to 7 min. that it takes one, or at the most two people to get Louise out of bed and into the wheelchair must be a high level priority. After physical therapy getting her back into bed does not need to be as high a priority but if there is not time for couple of hours to move her from the wheelchair to the bed then there should at least be time for one staff member to give her a painkiller to hold her over until she can be moved from the wheelchair into the bed. As soon as enough physical therapy has been done so that she can get out of bed and into the wheelchair on her own this manpower need will be eliminated. Therefore staff members who point out that it is inconvenient to get Louise out of bed for the physical therapy can be told that the faster Louise is able to get out of bed on her own the sooner the inconvenience of lifting her will be removed from their work schedules.*


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## Miss Vickie (Dec 30, 2010)

Russell, as a staff member often called upon to move patients, I have to let you know that it's up to the individual on duty to decide what assistance she needs to safeguard the safety of the patient and the nurse. Some of my colleagues are, as an example, comfortable getting patients up after delivery on their own. I, however, am not, having injured myself doing just that. For my patients' safety I always have a second RN standing by so that if my patient does have difficulty staying up after getting up, there are two of us to ease her back to safety. Some people take their chances, and most of the time it goes fine. But having had a patient faint on me (literally), I always get help.

So while I know that it's frustrating to you and to Louise to miss physical therapy (and it's inexcusable, in my opinion), I also understand the staff's reticence to a) not follow the guidelines by the physical therapists whose job it is to determine the patient's physical capabilities and make a plan to get them up, and b) not put themselves or the patient in harm's way by getting her up without support. I, and many of my colleagues, are living with lifelong injuries from moving patients without proper support. It affects our health, our livelihood, and as I said before -- it also puts the patient in danger.

I think the best course of action for Louise is, when the day shift comes in, to meet up with her RN and be proactive. If she makes a plan with the RN to be sure to get her to physical therapy so they're both on the same page, it'll be more likely to happen. The RN will know Louise's current orders in terms of getting out of bed, as well as her comfort level and the number and physical capabilities of the people she's working with. I know in our case, sometimes we have a lift team, sometimes we don't. Sometimes we have strong colleagues capable of more physical activities such as lifting a patient with fewer people. And sometimes we don't. But making a plan early in the day, with the RN, will help increase the odds of her getting to physical therapy. The other piece of this is getting the physical therapists involved, so they can perhaps be more flexible with timing, by understanding that it takes longer for Louise to get out of bed. 

Hope some of this helps. I understand your frustration -- I've been a patient before. But I also want you to understand the limitations that the staff is dealing with as well and their need to protect themselves, and patients, from harm.


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## cinnamitch (Dec 30, 2010)

Miss Vickie said:


> Russell, as a staff member often called upon to move patients, I have to let you know that it's up to the individual on duty to decide what assistance she needs to safeguard the safety of the patient and the nurse. Some of my colleagues are, as an example, comfortable getting patients up after delivery on their own. I, however, am not, having injured myself doing just that. For my patients' safety I always have a second RN standing by so that if my patient does have difficulty staying up after getting up, there are two of us to ease her back to safety. Some people take their chances, and most of the time it goes fine. But having had a patient faint on me (literally), I always get help.
> 
> So while I know that it's frustrating to you and to Louise to miss physical therapy (and it's inexcusable, in my opinion), I also understand the staff's reticence to a) not follow the guidelines by the physical therapists whose job it is to determine the patient's physical capabilities and make a plan to get them up, and b) not put themselves or the patient in harm's way by getting her up without support. I, and many of my colleagues, are living with lifelong injuries from moving patients without proper support. It affects our health, our livelihood, and as I said before -- it also puts the patient in danger.
> 
> ...



Agreed. Also, Hoyer Lifts are to be used with 2 staff members at the least. One to handle the actual mechanics of the lift and the other to work with the patient going from the bed to the chair and back. I am surprised therapy isn't coming up to get her. They are well versed in Hoyer use and often times they use this opportunity to see how much a patient can do for themselves.


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## Miss Vickie (Dec 30, 2010)

cinnamitch said:


> Agreed. Also, Hoyer Lifts are to be used with 2 staff members at the least. One to handle the actual mechanics of the lift and the other to work with the patient going from the bed to the chair and back. I am surprised therapy isn't coming up to get her. They are well versed in Hoyer use and often times they use this opportunity to see how much a patient can do for themselves.



Good to know, Cinnamitch. I didn't know that about Hoyer Lifts. (We don't have them on our unit since most of our moms are ambulatory). I was surprised that PT wasn't coming to get her, too. It's much safer for PT to get her, and that allows them the opportunity to see how she's coming along. Given the patient loads that most of us have, I imagine it's really difficult to find several staff members who have the time -- at the same time -- to get her out of bed. It seems like a really inefficient way to go about it.

Maybe that's why my hospital has a lift team?


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## cinnamitch (Dec 30, 2010)

Miss Vickie said:


> Good to know, Cinnamitch. I didn't know that about Hoyer Lifts. (We don't have them on our unit since most of our moms are ambulatory). I was surprised that PT wasn't coming to get her, too. It's much safer for PT to get her, and that allows them the opportunity to see how she's coming along. Given the patient loads that most of us have, I imagine it's really difficult to find several staff members who have the time -- at the same time -- to get her out of bed. It seems like a really inefficient way to go about it.
> 
> Maybe that's why my hospital has a lift team?



It's more from a lawsuit standpoint. With a person that is heavier, or say combative and attempting to get out of the lift, it has been known to tip over. We had it happen to a resident while getting her out of the tub. One aide, one tipping over lift and voila, broken hip. When they first came out , I used them alone as did most of the other nursing assistants. It has come a long way from the bad old days. Russell i would really talk with PT about them coming in to get her up or at least come up to make sure she is gotten up. Its really not brain surgery. You need one person to roll her over to tuck the canvas under her then hook it to the lift and the other person works the lift while the other assistant guides the patient over to the chair and down into it. Seems like pure laziness on staff part.


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## Russell Williams (Dec 31, 2010)

Today Louise was able to get from the bed, highest, to the shower chair, middle height, take a shower, and then to the wheelchair, lowest height. This was with an aide watching but not touching.

If the top of the mattress is about 6 inches higher than the wheelchair seat Louise is able to get out of bed do a partial twist and then sit in the wheelchair. Now all she needs is someone to move the wheelchair and walker close to her bed and then she is able to get out of bed on her own and wheel herself to physical therapy.

The physical therapy today, with the bed at a fairly high level, Louise was able to stand five times. Over the weekend the plan is to have the bed at a high level and have Louise stand up. Louise will sit down and then the bed will be lowered about an inch. Louise will then try to stand up. This will keep going until the bed is at such a low level that she is no longer able to stand up.

It is hoped that in a couple of sessions the bed and the wheelchair will be at the same level and then she will be able to stand up whether she is in the wheelchair or the bed.


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## Webmaster (Jan 1, 2011)

Best of luck to you and Louise, Russell! You have a lot of living and catching up to do, and I hope you get to do it under the best possible circumstances.


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## steved (Jan 1, 2011)

Hi Russell, I am a PT and rehab director in a nursing home. The PT or rehab director needs to communicate to nursing staff how Louise should get out of bed (i.e. transfer assist of two with rolling walker to wheelchair or Hoyer lift transfer assist of two/three to wheelchair). In the home I work in, we write "activity orders" in the physician orders which helps with staff compliance. As her status improves, they need to update the "activity orders" appropriately. 
If they want her in therapy by a certain time, they can come to the nursing station first thing in the morning and request that she be up at a certain time. If the nursing unit is short staffed, one of the therapists should run down to her room to help transfer out of bed. This would give them an opportunity to see how she does in the room and to train the nursing staff. What I would say to the nursing assistant is, "call me when she is ready, and I will come over and help you get her out of bed."
Now, the therapists aren't there all the time so the nursing staff should be expected to get Louise out of bed even without the therapists help. Louise should get out of bed everyday, even on a weekend when there might not be therapy. Staying in bed is not a good idea. Good luck!!!


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## Russell Williams (Jan 3, 2011)

Who are giving me their thoughts and suggestions in the hope that their thoughts and suggestions will help improve the understanding that Louise and I have of the situation and help get Louise out of the nursing home more quickly. Louise and I deeply appreciate people taking the time to do this.


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## Russell Williams (Jan 3, 2011)

If you do not keep your wits about you they will kill you.

Yesterday Louise happened to notice that, among the many medicines she gets, the antibiotic she normally takes was not there. She asked questions and was told that there were no orders to give her the antibiotic that protects her from C diff. Louise entered into a discussion with the person that told her that she could no longer have the antibiotic because they were no orders to give it to her. As a result of the discussion the medicine giver went back to check Louise's medical record and discovered that there was an order to continue giving Louise the antibiotic for the C diff. Louise got the antibiotic.

Suppose Louise had not noticed that among the many medicines she is given the antibiotic was not there. I do not wish to contemplate that.


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## Russell Williams (Jan 3, 2011)

Webmaster said:


> Best of luck to you and Louise, Russell! You have a lot of living and catching up to do, and I hope you get to do it under the best possible circumstances.



it is such a wonderful feeling to know that the magnificent and wonderful Louise Wolf loves me.

Louise was telling someone in the nursing home that she had moved from San Francisco to Hagerstown to be with and marry me. The person listening commented, "wow! He must be something special if you would leave San Francisco and come to Hagerstown to be with him". I considered to be an excellent complement.


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## moore2me (Jan 6, 2011)

Hi Russell,

I am impressed by the fight that you and Louise are continuing to carry on against the ravages of disease, modern medicine gone astray, and the bureauracy of what was once a well meaning health care system. I was moved to write you when I read about Louise not have her antibiotics renewed for her c. diff infection.

A month or so ago, there was a fascinating news article on the internet about a new treatment for c. diff that did not involve antibiotics. As weird as this sounds, it was a *"fecal transplant". *I am not making this up or playing a joke here. I have been looking at this thing and it seems to be covered and verified and several bonified professional journals. I strongly suggest you look into it if you and Louis or your doctor have not already. The beautify of this treatment is that the results are prompt, the transplant usually involves material from a close family member (like yourself), and does not rely on the marginally effective antibiotics.

Here are some of my sources
http://www.google.com/hostednews/ap...SnI5GQ?docId=145a1846f6b94b3b9e913460036285c0
http://en.wikipedia.org/wiki/Fecal_bacteriotherapy
http://journals.lww.com/jcge/Fullte...eriotherapy,_Fecal_Transplant,_and_the.8.aspx


These transplants (or good germ infusions) are not miracles but have been associated with other helpful actions as well. Before we scoff too much, don't forget that only years ago we found that most ulcers were caused by bacteria and not stress.

*Fecal Transplants have been documented to cure or halt the progression of the following human health problems:
* Ulcerative colitis
* Clostridium difficile or C. diff*
 Pseudomembranous enterocolitis
 Chronic diarrhea
 Obese patients with a constellation of symptoms known as prediabetes improved insulin sensitivity with a fecal transplant

However, an ounce of prevention is worth a pound of cure. Most likely Louise's c. diff infection came from her hospital or her nursing home. The first line of preventing infection falls to the hospitals or clinics and the staff - not to antibiotics. Antibiotics are quickly becoming unable to kill the wiley, every, changing, supercharged bacteria. My next post will be dedicated to minimizing bacterial contamination of a patient and/or their room in a healthcare setting.


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## moore2me (Jan 6, 2011)

*HAIs or Healthcare Associated Infections can occur in hospitals, nursing homes or in other facilities (dialysis, home care, etc.).* Drug resistant bacteria transmitted to a patient in the hospital can kill or can make their normal recovery dismal or delayed for years. It can also sentence people to amputations of limbs that were healthy when they went in to the facility or total failure of operations. *And the bad news is the infections are getting worse and the drugs are getting more resistant - harder to kill.*

*Since several DIMMERS are professional healthcare providers who can offer valuable info on this subject, I also encourage your input on ways to protect patients. Also, I know that some of you have been patients yourselves or like Russell have loved ones who have battled this HAI demon. At the risk of hijacking Russell's thread, any prevention tips would be appreciated.*

Below quoted from http://www.hospitalinfection.org/protectyourself.shtml (Most of the following also apply in long term care situations.)

*15 Steps You Can Take To Reduce Your Risk of a Hospital Infection*

*1. Ask that hospital staff clean their hands before treating you, and ask visitors to clean their hands too.* This is the single most important way to protect yourself in the hospital. If you're worried about being too aggressive, just remember your life could be at stake. All caregivers should clean their hands before treating you. Alcohol-based hand cleaners are more effective at removing most bacteria than soap and water. Do not hesitate to say: "Excuse me, but there's an alcohol dispenser right there. Would you mind using that before you touch me, so I can see it?" Don't be falsely assured by gloves. If caregivers have pulled on gloves without cleaning their hands first, the gloves are already contaminated before they touch you. 

*2. Before your doctor uses a stethoscope, ask that the diaphragm (the flat surface) be wiped with alcohol.* Stethoscopes are often contaminated with Staphylococcus aureus and other dangerous bacteria, because caregivers seldom take the time to clean them in between patient use. 

3. *If you need a "central line" catheter, ask your doctor about the benefits of one that is antibiotic-impregnated or silver-chlorohexidine coated to reduce infections*. 

*4. If you need surgery, choose a surgeon with a low infection rate.* Surgeons know their rate of infection for various procedures. Don't be afraid to ask for it.

*5. Beginning three to five days before surgery, shower or bathe daily with chlorhexidine soap.* Various brands can be bought without a prescription. It will help remove any dangerous bacteria you may be carrying on your own skin.
*
6. Ask your surgeon to have you tested for methicillin-resistant Staphylococcus aureus (MRSA) at least one week before you come into the hospital. *The test is simple, usually just a nasal swab. If you have it, extra precautions can be taken to protect you from infection.

*7. Stop smoking well in advance of your surgery.* Patients who smoke are three times as likely to develop a surgical site infection as nonsmokers, and have significantly slower recoveries and longer hospital stays. 

*8. On the day of your operation, remind your doctor that you may need an antibiotic one hour before the first incision*. For many types of surgery, a pre-surgical antibiotic is the standard of care, but it is often overlooked by busy hospital staff. 

*9. Ask your doctor about keeping you warm during surgery.* Operating rooms are often kept cold, but for many types of surgery, patients who are kept warm resist infection better. This can be done with special blankets, hats and booties, and warmed IV liquids.

*10. Do not shave the surgical site.* Razors can create small nicks in the skin, through which bacteria can enter. If hair must be removed before surgery, ask that clippers be used instead of a razor. 

*11. Avoid touching your hands to your mouth, and do not set food or utensils on furniture or bed sheets. Germs such as "C. Diff" can live for many days on surfaces and can cause infections if they get into your mouth. All caregivers should clean their hands before treating you. About two-thirds of medical staff were unaware they should clean their hands with soap and water, because alcohol sanitizers don't kill this superbug. *

*12. Ask your doctor about monitoring your glucose (sugar) levels continuously during and after surgery, especially if you are having cardiac surgery. The stress of surgery often makes glucose levels spike erratically. When blood glucose levels are tightly controlled, heart patients resist infection better.* Continue monitoring even when you are discharged from the hospital, because you are not fully healed yet. 

*13. Avoid a urinary tract catheter if possible. It is a common cause of infection. The tube allows urine to flow from your bladder out of your body. Sometimes catheters are used when busy hospital staff don't have time to walk patients to the bathroom. If you have a catheter, ask your caregiver to remove it as soon as possible. * 
*
14. If you must have an IV, make sure that it's inserted and removed under clean conditions and changed every 3 to 4 days. Your skin should be cleaned at the site of insertion, and the person treating you should be wearing clean gloves. Alert hospital staff immediately if any redness appears. *

15. If you are planning to have your baby by Cesarean section, follow the steps listed above as if you were having any other type of surgery. 

*Ideally, you would choose a hospital with a low infection rate. Good luck getting that information.* It's impossible. Many states collect data on infections that lead to serious injury or death, but nearly every state-with the exception of 6-has given into the hospital industry's demands to keep the information secret. The federal Centers for Disease Control and Prevention also collect infection data from hospitals across the nation, but refuse to make it public. Government is too often on our backs, instead of on our side.

What's the answer? Hospital infections report cards. Hospitals object that comparisons would be unfair because hospitals that treat sicker patients, such as AIDS, cancer, and transplant patients who have weakened immune systems, will have a higher infection rate. True, but the data can be risk adjusted to make comparisons fair. What is unfair is preventing the public from knowing which hospitals have infection epidemics. Keeping infection rates secret may help hospitals save face, but it won't save lives.


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## Russell Williams (Jan 7, 2011)

The wheelchair is 20 inches off of the floor. Last week Louise could not get up from the bed unless the mattress was 26 inches off of the floor. Today, from the bed whose mattress was 22 inches off the floor Louise was able to stand 10 times. She also was able to walk, with a walker, 10 feet.

There will be no physical therapy Saturday or Sunday but, in my presence, Louise plans to see if she can stand from 21 inches. Louise can already get from the bed to the wheelchair but she needs to be able to get out of the wheelchair and back into the bed.


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## Russell Williams (Jan 17, 2011)

And the saga goes on.

One day last week Louise and I were eating lunch in the dining hall. We saw an ambulance pull up and wondered if they were bringing someone or taking someone. When the stretcher came out empty we realized they would be picking up someone. We went back to enjoying our lunch.

In about 3 min. a staff member comes up and tells Louise that the ambulance is there ready to take her. Since Louise knows absolutely nothing about this she starts asking questions. The person does not know where the ambulances taking Louise but asks Louise whether or not she wants to go. Louise and I both state that we need more data before making that decision. The person wanders off and comes back with the information that the ambulance is taking Louise to her doctor's appointment. Louise asks what Dr. it is that she is supposed to be seeing. The person does not know. Finally with repeated questioning we find out that, unknown to Louise, she is been scheduled for another follow-up urologist appointment. Louise points out that the last time she went to see the urologist he did not look at her and all that happened was that after the nursing home nurses had explained in detail why nurses were not allowed to pull the strings of urinary tract shunts the doctors's nurse pulled Louise's string and send her home. Louise called the doctor's office and was told that this was a follow-up to her last appointment. Louise pointed out that the last time the Dr. had not looked at her and therefore she did not see why it was necessary to pay the money for an ambulance ride to and from the Dr.'s office to have the Dr., quite possibly, not look at her again. I told the waiting ambulance crew that I was sorry that they had been sent on a wild goose chase but that this particular wild goose chase was not the fault of either Louise or myself.


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## Russell Williams (Jan 17, 2011)

The light at the end of the tunnel may not be the oncoming train.

The wheelchair seat height is 20 inches. Saturday, with the bed set at about 23 inches high, Louise was able to get up and, with her walker, go about 33 feet. Sunday, with the bed set at about 23 inches high, Louise was able to get up and, with her walker go about 38 feet. However, she was still totally unable to stand up from her 20 inch high wheelchair seat.

Today in physical therapy she stood up from her 20 inch high wheelchair seat, walked, with her walker 40 feet, and then, after a short rest, stood up from her wheelchair seven more times. It is exactly 14 days till she must either be out or start paying about $350 a day.

Today one of the physical therapists looked at the front seat of my Toyota Sienna and said that it looks like in a couple of days Louise could practice getting in and out of the car. He also looked at the ramp I have built that will help Louise get in and out of the house and he thought that that looked appropriate.

Louise is looking forward to getting approval to take a couple hour nursing home approved trip with me. I am about to suggest that an ideal trip would be for Louise, for the first time since the middle of September, go to church next Sunday.


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## BullseyeB (Jan 17, 2011)

Russell Williams said:


> The light at the end of the tunnel may not be the oncoming train.
> 
> The wheelchair seat height is 20 inches. Saturday, with the bed set at about 23 inches high, Louise was able to get up and, with her walker, go about 33 feet. Sunday, with the bed set at about 23 inches high, Louise was able to get up and, with her walker go about 38 feet. However, she was still totally unable to stand up from her 20 inch high wheelchair seat.
> 
> ...



Russell,

This is good news! I will keep you both in my thoughts! :happy:

Laura


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## Russell Williams (Jan 23, 2011)

Once more the battle beckons.

Louise had been repeatedly standing up from her wheelchair 6 to 12 times in each therapy session. She also had been walking with her walker regularly between 20 and 40 feet. However toward the end of last week her pain level started increasing.

By Friday night her pain level was back up to an eight. Friday night when the staff came in and found that her diaper was not straight they wanted to roll her over and put a new diaper in. Louise asked them to simply strengthen the existing one and not roll her. Later on she was only moist and they wanted to roll her and change her diaper and bed sheets. She did not think the situation yet warranted the pain she would have to endure. Soon three staff members came down to be able to certify that she was a noncompliant patient.

What I found out about this I told Louise that she needed to take immediate steps to get her background pain medication increased. She said she would talk to the doctor if and when he saw her in this coming week.

Yesterday evening, during a visit she moved to push the call button and excruciating pain started kicking in and, actually I believe for the first time, she started screaming in pain. I said, "Good!". Louise was not happy with my comment and through her screaming told me so.

The screaming brought hospital staff far faster than the call button would have. Louise was immediately issued a short-term painkiller and the Dr. was called and approved the dosage of her long-term painkiller being doubled.

Today the pain levels were down to about a level two and she was able to get out of her bed and into her wheelchair and up and down out of her wheelchair and to attempt to practice going up steps.

Tomorrow I plan to talk to whoever controls the medical record and tell them that, when Louise was being told she was noncompliant she did not ask them for a painkiller and say "Come back 20 min. after you give it to me." I plan to then ask if any of the three people witnessing said to Louise, "Would you like us to give you one of the pain killers that we are authorized to give you and then have us come back in 20 min. to roll you?" If the answer is that they asked no such question I will then ask why, given Louise's documented history of pain problems, such a question was not asked of Louise. I will also request that the fact that such a question was not asked be included in the patient blog either right before or right after Louise is listed as a noncompliant patient.


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## Russell Williams (Jan 23, 2011)

Louise has seven more days to leave the nursing home. If she is not able to do it in seven days she will have to start paying about $350 a day.

I have acquired a used hospital bed and installed it in the living room.


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## Webmaster (Jan 24, 2011)

Blogging, tweeting, Facebook, instant customer reviews. etc., have totally changed how business does business, and how business reacts to, and reads, customer experience and satisfaction. I cannot help but think that the healthcare industry, too, would benefit from using those tools. As beneficial as it is here for us at the Dimensions community to learn of Louise's ongoing trials and tribulations, the ones who really need to be aware of how Louise and Russell experience all this are the healthcare providers themselves. Someone at any nursing home, clinic and hospital should be on top of that and give it some thought.


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## Russell Williams (Jan 24, 2011)

I regularly keep the higher-level people in the nursing home informed of my concerns. I push them so hard that I worry about them banning me from the nursing home.

The man who pays the piper calls the tune. It is your board and not my board. Do you wish me to stop posting about Louise?

Yours truly

Russell Williams


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## Webmaster (Jan 24, 2011)

No, don't stop; that's not what I meant. I know that you're likely making your wishes known at the nursing home. And I certainly know that whatever you do is out of concern for Louise and her progress.

My post was simply a commentary on the fact that those who most need to read and hear these things are generally isolated in an office somewhere, or they view requests as pesky nuisance rather than important feedback. All sort of industries are now using Twitter or Facebook as a means to be more, and more quickly, accessible to their customers, but it requires an institutional willingness and effort to make it happen.


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## Russell Williams (Jan 28, 2011)

However it does look like Louise will be home on Tuesday. If she stays there Tuesday night she has to start paying about $350 a night. I have purchased a hospital bed and installed it in the living room. The head of the bed, the foot of the bed, and the whole bed, all move up and down electrically.

With the handicaped walker Louise regularly goes between 20 and 40 feet and each day she stands up out of the wheelchair between 10 or 15 times, in a row. The nursing home staff will not approve even watching Louise attempt to get into a car so other means of getting her home will have to be arranged.

Her pain level is under better control and it stayed that way for about four weeks and so her spirits are much better. (There was a three-day. When the pain level was rapidly increasing but then they doubled the dosage of her pain killer and she feels much better.)

We both thank all of the many people who've taken time to respond with expressions of concern and with comments and suggestions.


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## Russell Williams (Feb 3, 2011)

Louise is finally home.

As with so many things in the last five months her arrival day was not uneventful. She was supposed to come home Tuesday but because of the weather predictions it was decided to bring her home on Monday. At one point they were three ambulances with their ambulance crews working on getting Louise into the house. In the middle of this I managed trip and fall hard on the cement sidewalk. Fortunately I did not break anything but my knee was rather badly bruised. Monday night Louise decided to go to the bathroom and in the process wound up on the floor. I had to invite some friends over for lifting party and using the lifting blanket we were able to get her up.

I had already purchased the hospital bed and then I went out and purchased a Hoyer lift and a bedside commode. Yesterday she was able to get out of bed, use the bedside commode, and then get into her wheelchair. She then went to the kitchen and started trying to rectify the five months or so of destruction that I had done to her kitchen organization. Then she went into the living room and started nesting. A home healthcare nurse showed up. The home healthcare nurse said many things and I was not able to get all of them straight in my mind but I believe a nurse will be coming at least once a week, a physical therapist will be coming once or twice a week, a homemaker may be coming once or twice a week, and censored of healthcare assistance may be coming once or twice a week.

A friend is also working on the front porch to make it more handicapped accessible. At the moment Louise cannot go up and down steps. Until she can go up and down steps and lift her legs it will be very difficult for her to go anywhere by car. This unfortunately includes going to church.

If in the next two months Louise does not spend a single night in the hospital the 100 days of nursing care will reset. If she should go back into the nursing home in the next two months she will have to pay around $350 a night.


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## LillyBBBW (Feb 3, 2011)

Webmaster said:


> Blogging, tweeting, Facebook, instant customer reviews. etc., have totally changed how business does business, and how business reacts to, and reads, customer experience and satisfaction. I cannot help but think that the healthcare industry, too, would benefit from using those tools. As beneficial as it is here for us at the Dimensions community to learn of Louise's ongoing trials and tribulations, the ones who really need to be aware of how Louise and Russell experience all this are the healthcare providers themselves. Someone at any nursing home, clinic and hospital should be on top of that and give it some thought.



I agree. Recently I felt compelled to leave a negative review on Yelp for a particularly bad experience I had. As I tinkered around on that site I noticed that my knee surgeon had a review there as well. I decided to add one for him too. I've seen reviews of churches, doctors, law offices. When putting in a search on any of these businesses, in the top 5 results is usually a link to customer reviews on Yelp. I'd be shocked if businesses didn't read them.


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## Russell Williams (Feb 21, 2011)

Why I was not in church this morning.


Since the beginning of February Louise has been home. During that time I have spent time in the hospital. Right now Louise's medical needs and medical situation is such that I am using all of my physical and mental resources to attempt to deal with them. I wanted to come to church today and to bring Loretta with me but I finally decided that the effort of taking care of Louise's needs, picking up Lori, going to church, coming back to take care of more of Louise's physical needs, and then taking Lori out for a drive would be to physically exhausting for me.



Right now about all that I am trying to do is to do those things that are necessary to meet Louise's physical needs, trying to keep myself from getting sick and back in the hospital, and to do the laundry and other assorted household tasks. I hope that Louise will get better and not relapse back into the hospital and from thence to the nursing home at $11,000 a month.


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