ic patients in nursing homes

[scarlett0]

i work in a nursing home as a cna, and have been thinking about my residents who constantly have to use the bathroom lately. as our population ages, more and more ic patients are going to be entering nursing homes or other similar facilities. there is a definite lack of awareness of ic in those types of places, from my personal experience. everyone i have ever spoken to about what i have has been dumbfounded and said they have never heard of the condition.

at times, a resident may say, "i must use the bathroom," and a nurse will reply, "i just took you!", or "you were just there!" some residents forget they were there due to dementia, or they are attention seeking. others truly do have to go again, and others are obsessed with using the toilet. imagine what it would be like to be a nursing home resident with ic. you are toileted, and 20 minutes later, must go again. your cnas are with other residents, and cannot always stop what they are doing and take you. some nurses are compassionate and do what they can for you, and others, the few that give nursing a bad name, begin to neglect you. they refuse to take you, no matter how often you beg, and may even remove you from your present area to your room or other place so you are less of a nuisance. lack of information about ic in nursing homes may lead to elder abuse, whether willful or not. nursing is taught to toilet people every 2 hours, but also not to toilet during meals due to infection control issues. it's just not sanitary, and is a dignity issue to leave a person you're in the middle of feeding to toilet someone. the nurses may put you on a 2 hour toileting schedule, which is done with people who often request to be toileted, to retrain their bladder. a 2 hour schedule would be excruciating for ic patients, especially those who pee 20-100 times a day! bad nurses may simply ignore you, or try to get you medicated so you don't have these "behaviors." another issue is staffing. not all nursing facilities are staffed well, or as well as they could be, and there may just not be enough manpower to assist an ic patient as often as needed. catheters may need to be introduced, creating a greater risk of uti. i'm not trying to paint a bad picture of nursing, or nursing homes. i love the one i work in, and the nurses i work with truly love our residents and spoil them rotten. but, we all know the horror stories we've heard, and need to keep that in mind when we think of ic education. we don't want to leave our older population out of the loop.

another issue is the pain we're in. some docs, as we all know, are reluctant to order pain meds for us. in nursing facilities, there must be a doc's order for every med, even tylenol. the nurses fax the doc to get the orders, and if the nurse doesn't know the patient is in pain, they can't be helped. we also want to rule out other problems and get meds for the right conditon. a nurse who knows nothing of ic will not know how to ease a patient's ic pain symptoms. moving, transferring from bed/chair/toilet will be horrible, we'll be cranky, depressed, miserable, etc.

finally, diet. our nursing home has a dietician, and when i approached her with questions about food substitutions, she was amazed at the ic diet and how restricting it is. she had little to no knowledge of our condition, and how to feed us. dietary staff ask a resident's likes and dislikes, allergies and such upon admission, but imagine if no one knew what we can and can't eat? in our facility, residents receive a menu tailored to their dietary needs with a choice of 2 entrees, 2 sides, fruit, tossed salad and dessert, and choice of drink. if they want something that is not on the menu, we must first educate the resident about why they cannot have the item (diabetic, too much salt, etc). if they still want it, we must give it to them. if nursing staff does not know about ic, they cannot help the resident make appropriate food choices.

join me in educating the older population, and the facilities that care for them, during ic awareness month. i know i'd hate to be a resident and not be able to pee as often as needed (i realize that once i became incontinent, that would be a non-issue, but i hope that after educating nursing about ic, people aren't ignored when they "gotta go" and end up wetting themselves because they just can't hold it anymore). a resident with dementia and ic won't always understand "sorry, i can't take you, i'm with someone else," or "i just took you, wait til later." they may become combative as the demenia progresses and they lose the ability to express concerns like using the toilet and pain, creating a slew of other issues.

thanks so much for helping to care for our older population. we're all gonna be there some day, so let's make it bearable!!!

[Toto]

This was a great post. I totally am on bored with educating nursing homes about IC. I cannot imagine anyone putting me on a 2hr schedule to use the bathroom. Just someone telling me that would make me have to pee in five minutes. I'd be peeing my pants all the time and would have to use diapers to be frank.

If I think about all the people that could possibly suffering right now in nursing homes it will keep me up at night. The IC is a serious topic.

I didn't know what IC was until recently, even though I went to numerous doctors over the years and had other diagnoses.

[ICNDonna]

Very thoughtful post. I agree that extended care facilities need to be educated on the needs of IC patients.

Warm hugs,
Donna

[momw/ic]

This is such a great post! I had not considered or thought of any one of these things. It does make me concerned for if I am ever in a nursing facility. I will be making sure my family members are fully knowledgeable and educated so they can speak to IC on my behalf as well.

Thanks for getting us all to thinking about a whole new aspect of IC!

[Jadia]

What a wonderful time to be posting an article like this as well with IC awareness month coming up and so many available resources we can get from http://www.icawareness.org/ to take and share with staff at these facilities!

[statesboro]

I did like reading that as well. I know I have advertised about IC awareness and about next month on Facebook, but I don't figure that has helped with what you were referring to. Also, I do have a few shirts that I like to wear that do advertise IC.(and getting another one from cafepress that I had made up about IC and next month) Of course, I actually wore my "I am MORE than IC!" T-shirt over to the urologist office a while back. I did not have anybody in the office to ask where it came from. (or if I was trying to advertise) (or whatever) I have noticed more nurses need to be educated because I have encountered more than one that did not know what Elmiron was for. (and even heard it pronounced Emiron)(although I may have encountered a couple of students that were in training that did not know) (as we do have a university and technical college in town) Regardless, I would hate to be in a nursing home and get told by a nurse that was not fimiliar enough with IC to wait until the next hour. That would just burn me up. OK. Yep!

[Julie B]

Scarlett, please email me privately at NutraConsults@aol.com. I have talked to a dietitian who does training for nursing homes, and I think your letter would be perfect to pass on to her. Maybe you and I can work together to come up with an article to educated nurses/dietitians who work with nursing home patients.

Thank you for your thoughtful post!!!

[penneyjo]

I thought of this just a few days ago and wondered what I would do if placed in a nursing home. The diet alone would be a huge problem, and then the frequency on top of that. What a nightmare.

[MaryS]

When my father was in a nursing home just before passing away I spent 6 hours a day with him for one month. I had to constantly get after the nurses to get my father things he needed and to get them to empty his urine bag. He was dying and was suffering and complained of headaches all the time. I questioned why they were not giving him tylenol for his headaches and they said he reached his quota for the day. They said it wasnt good for his liver. I SAID FOR GODS SAKE HE IS DYING SO IT DOESNT REALLY MATTER IF HIS LIVER IS DAMAGED. He lived just one month there before he passed on .It was a very nice relatively new facility yet the care there was horrible. The snack cart came every night after the residents had already fallen asleep for the night. So they didnt get their snack. The foods they serve I COULD NOT EAT. THeir bread is full of preservatives and I seriously doubt they would go to the trouble and expense of buying preservative free breads. They served cold cut sandwiches also full of preservatives. The tunafish /chicken salad sandwiches full of mayo .again things we can't eat. AND do you really think they will supply prelief to ic patients. Snacks were jello and jello pudding which I also cannot eat. In fact most of the things he had on his menu were ic UNFRIENDLY. The soups had herbs and chicken broth which may contain things we can't have and the meatloaf with preservative bread crumbs, seasonings and tomato in it or on it. Do you think they will make a special meatloaf with ic friendly ingredients..or gravies etc just for ONE PATIENT with IC? A nightmare. I pray we all live and die peacefully at HOME.

[MaryS]

Right now my husbands employer provides medical benefits. What happens when you retire and go on medicare and end up in a nursing home. Right now to get through my day I take Elmiron, Elavil, Atarax, Uribel, Valium, Zanax, Amitza, Prelief, magnesium and Flaxseed Oil. God, do you honestly think they will provide this to keep us comfortable. My father was having itchy skin a symptom of his illness I think and they told ME to buy him the medicated skin cream. What if a person doesnt have family? Do they just let you suffer through things that are not supplied there? I told my husband I hope I die at home and not end up in nursing home. I saw some sad sad patients there. The staff told me their family would pop in once a month if that to see their parent. So I made it a point to talk to the patients that were near my fathers room just to get them to talk, laugh or smile even if for a brief moment....

[nineteenwinters]

I am saying an extra prayer tonight for these poor individuals with IC in nursing homes. The thought alone almost sends me in to panic attack. I can't even imagine.

I watched my dad die in a hospital (cancer; only lived for 2 months after diagnosis and it went to his brain) and the level of stupidity, and cruelness was unreal. Doctors trying to make him take high blood pressure pill and chastise him about weight loss WHEN HE WAS DYING; I just...ugh. And then yelling at him when he would have to be changed more than 'usual'. I know these people are overworked but I can't imagine treating someone with such disrespect. If I was a nurse and I was forced to be cruel to patients due to time I would probably leave.

:pray:

[ICNDonna]

My mother also passed away in a nursing home. I have to say she was treated with nothing but kindness and caring during the time she was there. In her last few weeks she was in a coma --- she was kept very clean. And nursing staff was so gentle with her. There are nursing homes where they really care about their patients.

A special diet does require a physician order. My mother was diabetic and before she went into a coma her special needs were absolutely met.

I agree that nursing homes (as well as hospitals!) need to be educated about interstitial cystitis --- and that doctors sending patients there need to order the care their IC patients need.

Donna

[scarlett0]

thanks for the positive feedback. we all need to look to the future for our care, and for the care of those who need it sooner.

MaryS, and others who have lost a loved one, my condolances. it's hard to see someone we care for in pain and misery, and not be able to do anything about it. you feel helpless, angry, depressed, scared, and a slew of other emotions. i would like to say one thing, and please, please, please, don't take this as me being rude, uncaring, or just sticking up for nursing because it's my profession.

nurses are only able to give what meds and at what doses a dr. orders. to give more, even when we believe it would benefit the patient, could cause the nurse to lose her license, and is against the law. as well, docs can only prescribe certain doses according to fda guidelines. in my 13 years working in nursing homes, i have seen many residents that i wish i could give roxanol or another med to to ease their suffering. unfortunately, it's how the world works. as i mentioned in the first post here, the few nurses who suck make it bad for the rest who truly care about their residents. where i work, our people are spoiled rotten. we buy them clothes, toiletries, treats, spend time with them, make sure they're clean and as happy as possible. we give extra attention to those without attentive families also. they are not our residents, they are our friends, our family. unfortunately, not all nursing staff cares as much or as often. here's the part which sounds rude but is not meant that way. if you see something you don't like, do something about it. if you can take the time to complain, take the time to make steps to fix it. volunteer your time with residents who have no one. volunteer with the recreation department. if you have issues and concerns, address the supervisors, the director of nursing, the administrators. if you have to, call the local area agency of aging, the department of health (they oversee nursing homes), the omsbudsman for your area. advocate for those who either cannot advocate for themselves or have no one else to do it for them. talk to social services in the facility. if i have an issue at work, i contact the proper department head and nag til it's taken care of. that's how much i love my people. things don't fix themselves. it takes someone to make the first step. contact family members of other residents and if they have the same concerns, work as a group. i realize your father's not there anymore, but there are other residents experiencing what he did. help them. that's why i put that post on here. i want to help my residents and help us when we get to that stage. i'm drafting letters to dept heads at my work and other homes to raise awareness. try that too. anything to help.

[nineteenwinters]

I don't think it's rude at all. :)

I never had any problems with the medication the nurses were told to give etc. I was just appalled at the lack of attention that was paid unless you were literally coding.

That is what we eventually had to do. I have since moved on out of Kaiser but that is what we had when my dad was in the hospital. I don't know if it had to do with the Kaiser system being overcrowded but there was a lot of things that they simply did not seem to have the time to do. I now will always regret we didn't just say "To hell" to Kaiser and take him to another private hospital. I guess we were all just so tired it didn't occur to us. But I think that's why more people aren't 'active' in questioning decisions etc. because their brains are frazzled.

Essentially we had to have a family member stay with him at all time and literally pester nursing staff until his needs were met. When he was alone he would sit in a dirty diaper for 4+ hours and unless his monitors went off he was given no attention whatsoever. But I agree you have to be really, really persistent with all hospital staff to get the treatment you feel you deserve. You really shouldn't have to but sometimes you do.

[Jadia]

Well said Scarlett!:smile tee:

I think alot of people think nurses have a lot more control over medications than they actually do. If a loved one needs medication changes, definitely call their doctor and speak to them yourself to get those changes made so the nurses can then act. Even speak to the nurse about what they may suggest if you are unsure. Being proactive in your hospitalized loved ones care will definitely help them and you feel better as well as helping the nurses help you.

[MaryS]

ScarlettO,

Well your employers are very lucky to have such a dedicated and compassionate nurse in their employ. Sadly, you are one of the rare few that actually CARE.

Both of my parents had serious illnesses which caused them to be constantly admitted into the hospital. I have met some nice nurses and doctors and then I have met some bad ones that should not be practising medicine.

I am not a person who just complains. I am a person who goes right to the top when I see an injustice or unprofessional behavior. In my fathers case, I asked the nurse for TYLENOL not a serious drug. When she refused my request I then asked her to contact the doctor who was handling my fathers care and tell him my dad was in pain and ask him what he can prescribe to make my father MORE comfortable.My father did not have his doctor handling his care. It was the doctors at the facility who were in charge of my dads care. I then had a meeting with the management and expressed my concerns on lack of quality care in patients. I voiced all my concerns about everything I witnessed at that facility. Some of the staff lacked in bedside manners and had no compassion. They have a room where they give their patients showers and they always left the door open so anyone walking down the hall could see naked patients being showered. I was appalled. It was like they were hosing down animals in a barnyard. fortunately these patients had dementia and did not realize that they were being treated disrespectfully. After the meeting, things changed and my father received meds to keep him comfortable. However, I did stomp on some toes so the two nurses in question hated me from that point on because they were reprimanded.

When a patient is in pain and like you said a nurse cannot just prescribe meds BUT she should have contacted his doctor and notified him of his patients condition and ask if there was something they could do to make him more comfortable. The nurse saw his pain and just didnt do anything about it.She gave him his meds and that was that whether they worked or not wasnt her concern. WHAT if my father didnt have ME ?? He would have suffered until he passed on because no one bothered to take it one step further by talking to their supervisor or to the doctor. If i was a nurse and my patient was in pain I would contact the doctor in charge and ask what can be done to help with his pain. He was put in the nursing home because his doctor said he needed 24 hour nursing care until he passed on. These nurses then lodged a complaint against me. They said I was in the way when they were trying to do their work with my father. Now, when i was there, I sat in a chair in the corner away from his bed so that the nurses /nurses aids could do their work without me being underfoot. Fortunately, two nurses aids stepped up and defended me saying I came in everyday and sat quietly in the corner and watched tv and chatted quietly with him. They said that I was NEVER a problem when they provided care to the my father nor did i interfere with their work. So that was the end of that and they just did their work and walked out. They lacked in compassion. Not only with my father but others. They came in the room did what they had to do and then left. I never heard them say hi, how are you doing ,is there anything i can do for you,are you comfortable. There was no conversation, they were like robots doing a job.

This nurse also said to me that when your father does die it will be a very painful process to witness because it wont be a peaceful passing but a very painful passing for your father. I think this was her way of punishing me because she said this to me after the reprimand. After that, each visit to my father was extremely stressful because each day i would wonder if this was the day he would die. He did pass away when i was there. I was alone with him (no other family members were there) and IT WAS GOD AWFUL. I only witnessed one death before and it was my mothers . My mother had a common surgery.The doctors said it was a sucessful surgery. and then something went wrong and she developed an infection in her body that spread like wildfire. One week she was alive and well and the next she was dead. It was a freakish happening.I was suspicious that they did something wrong but how to prove it?? I later learned that this same doctor performed a surgery on my cousins husband and he accidently severed his nerve endings below the waist. He had no feelings down there. He no longer felt the urge to urinate, he did not feel if he had to have a bowel movement and he was not able to have sex because he had NO feelings there.He was 40 years old.Hers was a gentle passing. My mothers nurse was AMAZING. She told us your moms organs are shutting down and she will pass soon. My sister and i were in shock and just stood there frozen and the nurse went up to my mother and gently took her hand and rubbed her arm. I think the nurse was trying to show us what to do without telling us verbally. It was just what we needed because we then went up to mom and i held one hand and my sister held the other and she closed her eyes and passed..softly and gently with no pain. My fathers death on the other hand was horrible it was like watching someone suffocate. I kept saying do something ,, help him,he is suffering. He turned purple and his body was acting like he was being zapped with electricity. The nurse just stood there with a cold look on her face ..NO COMPASSION and she said there is nothing I can do for him he is just going to have to go through the death process ..this is what she said to me..It was like a watching one of those scary movies where someone is killed slowly with torture. I suffered with nightmares for years after this.

In the past I have done battles with the schools in this town on bullying issues. I have also got involved with animal abuse issues in this town and went right to the top..the person who is supposed to enforce laws in town..the MAYOR and do you know what she said to me......she said that I have more important issues on my plate right now and animal abuse and animal laws are not on my agenda at this time. I contacted everyone from the Humane Society, SPCA, Dept of agriculture and they said their hands are tied that they cannot do anything and it is up to the mayor in each town to inforce the animal laws. You cant fight city hall alone and sadly no one wanted to stand by me in these fights. There were people who witnessed what I witnessed and refused to get involved.They said they were going to mind their own business.

I witnessed a man beating his dog............i reported it and he got a slap on his hand and that was that. A week later another neighbor witnessed him beating the dog with a rake and I said did you call the authorities she said NO, I am not getting involved. I am the type of person that when something is WRONG I get involved but sadly it doesnt help.....no one took me seriously, they all brushed it off.......and tho i called animal authorities again and reported this second beating they said they need PROOF and the witness to verify it......one month later this man was arrested for sexually molesting his step daughter,,she was 5 years old.......there is evidence that supports the fact that if a person can abuse an animal that this same person is capable of abusing a human being..if only that stupid women who was his wife had thought about this her child might not have been molested....she saw him beat the dog and did NOTHING. she didnt stop and think that he might someday beat her or her child. Sadly, we live in a world where most people dont want to get involved in things that are not right. They tend to turn a blind eye and walk away.

I had so many problems with teachers and students bullying my kids and parents would come up to me and admit that what i complained about was true but when i asked them to back me up and stand by me when i lodge complaints they refused saying they didnt want to get involved and bring trouble to themselves. I at times feel like we are fighting a losing battle..one person complaining will not be heard and others dont want to get involved so back to square one........nothing gets done.

[MaryS]

Also, I did forget to mention that I had talked to my friend, who was a nursing supervisor at a big hospital in the city, about this nursing stuff and she said there could be lots of things going on that you are not aware of. She said because of budgets sometimes hospitals/nursing homes are short staffed and the nurses are carrying a huge patient load and have to work fast to get to all their patients.She said this would explain the rushing in and doing the patient care and then rushing out again. They dont always have time for small talk with the patients. As to the caring/compassionate part she said some nurses tend to shut down emotionally because they deal with death on a daily basis. It is a way to protect themselves so that they can continue doing their job without breaking down emotionally. She said it does get extremely hard on nurses watching their patients die and also to watch the families watch their loved ones die. All of this makes sense to me and makes me more aware of the challenges nurses face daily. I understand this but I still think IF a patient tells you they are in pain it is up to the nurse to follow through with her supervisor or the doctor in charge and she agreed with me on this. Some patients dont have families to watch over their care so it is important for nurses to listen to what their patients tell them.If the nurses have already given out the necessary meds and the patient is still uncomfortable then they need to discuss this problem with someone of authority. A nurse shouldnt tell a person sorry but we gave you your meds and cant give you anymore so you will have to wait for your next med dosage. Like patients with IC, there are some that are helped with some meds and then there are others that are not helped at all. EACH patient is different and some require a bit of tweeking on the pain meds. The doctor will not know that a patient is in pain unless he is told. If a med is not working then perhaps the doctor would prescribe another med ........but he cant do this if someone doesnt inform him of the problem.

My friends daughter was a vet tech and she quit her job. SHE said it emotionally drained her. Seeing animals come in sick and in pain,or severly injured or watching animals die on the operating table was very difficult. Then there are the animals who come in to be put to sleep. Watching an animal being put down and witnessing the owners grieve during the procedure was just overwhelming for her.She could not handle being exposed to death on such a large scale. I never thought about this until she told me. She said most people think it is a fun job working with animals but it isnt always fun. The annual exams and well checks or random general ailments were ok but the death thing just got to her in the end........I guess you have to be a strong person emotionally to be able to do this sort of job whether it is with humans or animals.

My mother in law is now dealing with the nursing home problems with her aunt. SHE goes there every day an sits for hours to make sure her aunt is being taken care of properly. Her aunt has dementia. She said her aunt has had many bladder infections since being in the nursing home. The problem is that she is not drinking water and hydrating herself. Now the nurses put a pitcher of water on her bedside table but the aunt has dementia so doesnt remember to drink water. The nurses dont pour her a glass and make sure she drinks it........so my mother in law said unless i go there and pour her the water and watch her drink it she doesnt get her fluids. This is what bothers me the most..it is just common sense to make sure a dementia patient gets her fluids otherwise it just creates more health issues....again poor patient care..my mother in law said they just dont give a damn ....they just do their basic job and nothing more..they tell my mother in law oh she needs this or that and so my mother in law is having to provide her essentials and her clothing out of her own pocket..the sad thing is the state took all this womens assets..her money and her home and her social security check yet my husbands mom has to pay for all her essentials.......now that is sad for sure.

[scarlett0]

i agree that life is a series of difficult arguments in which we must fight for what we believe in. if we cannot go upward on the chain of command, we must go outside of it. i still say, in nursing home issues, contact the department of health, omsbudsman, or local area agency on aging. for those and other issues, such as animal abuse, bring in the local media. report those in positions of authority to the local newsstations and newspapers. shame those in power into taking care of issues. include like-minded people in your battles - power in numbers.

back to raising awareness in nursing homes - i have completed the letter to directors of nursing who are in charge of the nursing side of homes. i plan to give one to my own d.o.n., and send a copy to other don's in my area. i will also include a copy of the ic diet in each letter.

if anyone wants to read the letter, email me at scarlett0@verizon.net. i will send you a copy. feel free to make changes and use it in your own areas. thanks for your help in raising awareness in our older population!!!:smile tee

[Julie B]

This is such a valuable discussion. Most nursing homes also have patient advocates or a food service supervisor that the patients or their families can engage to help with their diets. Since a high percentage of people in nursing homes are already suffering from disability or a disease--and as a result, many are not 100% able to watch out for themselves. It is very important for us to educate our families now about our needs....not just food, but meds and other coping strategies we use to get through the day.

What other things might we need to communicate to the staff of a hospital or nursing home?

[valkay18]

Wow, ladies!! Honestly, I have thought about this situation many of times, and is truly scares me to death. My grandma is in a nursing home with Alzheimer's, and she would not be able to even remember that she could or could not eat certain things. She's been known to pick up a pen and try to eat it. Luckily she doesn't have IC. If I ever go to a nursing home for something like that, I don't think I would want to live. I am so diet sensitive right now, and am in constant pain. I would be in constant HORRIBLE suffering if I did not follow the diet very strictly. :( I am only 32 and hope to GOD that there is either a better medicine by the time I get old or there is a cure. :(

[scarlett0]

incontinence care is something that needs discussed in regards to nursing homes. with our frequent urination, some nurses may feel the need to put "diapers" on us (technically, they're "briefs" but are diapers for all intents and purposes), because they do not have the time and manpower to take us to the toilet as often as we need. i have 7-12 patients a night to care for, but i work in a home with good staffing. when i first started nursing at another home, i had 17-25 residents a night. even with a lower number of residents per cna, it's hard to toilet people. it seems everyone wants the toilet or to go to bed at the same time, and we have to prioratize who goes first. and having patients who require 2 aides to transfer them or use a machine to lift them, also needing 2 aides, time crunches even more. add in call lights constantly ringing, alarms going off (we put alarms on people who get out of their beds/chairs unattended and are fall risks to prevent falls. if they stand up, the alarm goes off and hopefully we get there before they fall), phones ringing, and all sorts of other distractions, it's very hectic. and, if you work 2nd shift like i do, you run into sundowning. that is when dementia behaviors get worse, towards evening. full moons also have an effect on patients-behaviors worsen during the moon phase, hence the word lunatic. what i'm getting at with all this mess is that aides (good aides anyway) are very busy, and it will be difficult to accomodate our toileting needs. we run the risk of being stuck in a diaper or "pullup" in case of accidents.

with increased incontinence, we run the risk of skin breakdown. when urine sits on the skin for prolonged amounts of time, especially when the person is sitting constantly, the acid eats away at the skin, and eventually creates an open area. this open area, if not properly treated, can become a bedsore, and worsen and deepen. protective skin cream, basically diaper rash cream, is a preventative measure my home uses on nearly all our residents to protect their skin from breakdown. if an open area occurs, we have more medicated treatments to heal the area, but the best is prevention first. if we are not toileted as often as needed, we are at higher risk becuase we're heavier wetters.

catheters are another issue. some nurses may think it's easier to put an indwelling cath in us than to constantly toilet us. while it does save time, it simply introduces more bacteria into our system, creating a uti on top of the ic. caths get emptied at least 1 time per shift, and there is a chance of introducing bacteria each time. if the area around the meatus (where the cath is inserted in the urethra) is not cleaned properly, especially after a bowel movement, there is a chance of uti. and everytime the nurses change the cath, becasue they do get funky after a few weeks, there's another chance for a uti, even though the nurses do their best to keep the procedure sterile. if we as ic patients/residents, become combative, contracted (when the muscles tighten and our limbs become stiff and bent) or simply confused, it makes cathing us harder. if the nurse can't see what she's doing because we're fighting, contracted, or holding our legs shut cuz we can't understand what's going on, the area becomes contaminated.

the doctors are issues as well. not every doc will visit a nursing home. docs are required by medicare to visit a certain amount of times. the rest of the time the lpns fax the doc with updates and requests for orders for meds or whatnot. so, our doc who knows us well may not be one who treats patients in a home. in that situation, the resident may choose the house physician or another who does come to that home. if the new doc does not know about ic, or believe in it, they may not want to give us the pain meds we need or other meds that will be beneficial to us. they can read our charts but will not know us as well as the doc that had been treating us. we need to make sure our docs are well-informed when we get into a home, so we can receive the same level of treatment we had been getting.

the recreation department also needs informed. we will probably need to leave activities and come back multiple times cuz we can't sit thru an hour program without using the toilet. we don't want to be seen as unwilling to participate. also, if the home takes their people on field trips like mine does (to farmers markets, picnics in the park, walmart, the mall, etc) the rec dept will need to know our needs. not only in regards to toileting, but to diet. i have seen diabetics come back from trips with candy, and all sorts of junk they're not supposed to have. volunteers push residents on those trips, adn may not be informed properly on the resident's diet requirements.

these are just a few issues that popped into my head while sitting here. i'm sure there's more, but this is a start anyway. when/if i get any responses from teh letters i'm sending out, i'll fill you guys in. thanks for all the support!!!!:hi:

[icnmgrjill]

Scarlett... I love your postings.. Please keep them up! I wonder if we could work together on an article for some of your professional publications?? Email me and let's talk jill@ic-network.com.

[kuntrygurl78]

I also work 2nd shift as a CNA at a nursing home. What you said was spot on! I know that if someone had to go to the bathroom every 20 minutes it would put a real strain on our system. Especially after supper when it seems that everyone has to go to the bathroom at the same time.

The state minimum requirements for the ratio for how many CNA's to residents is crazy. Its not realisitic. Like Scarlet said, it doesnt take into account those with alarms, wandering issues, and other behaviors that require constant attention. It also doesnt take into account when you have someone actively in the dying phase of life. That takes extra work too because you are not only taking care of your resident, but often making sure the family members are being attended to.

What needs to happen is for there to be more funding for nursing homes so that there are more CNAs. And pay them more! We dont make much above minimum wage. There arent exactly people running to become a CNA. Most who want to work in the field go straight into nursing because they make 2 to 3 times what we make. I became a CNA out of necessity due to losing my job a few years ago. Now, I wish I would have done this years ago! I LOVE it!!!

[Crystal30]

I think it is an excellent thing to bring up. I am not an HCP but would love to help in some way. Let me know.

[Catwoman100780]

I've had experiences with very good nurses who have helped me out a lot! But also those nurses who have not been so great. Every time I have a nursing student I ask them are you learning about Interstitial Cystitis in your classes. The answer to that question every time is no. I know they have a lot of other things to teach, cancer and the like. However, IC is spreading, they are learning how to diagnose it better and helping to treat it. Some of the treatments include surgery and staying in the hospital with these nurses taking care of us.
I know a woman who teaches nursing at a local college. I went to talk to her about IC. She told me she thought that's what was wrong with me. We talked quite a bit, she looked into her teaching binder and there were 6 pages about IC. The pages were in outline form pretty much

Lined

up

like

this.
The majority of the information was about diet. I went through and I told her some more about IC. So I went and offered my services to go into that college to talk to the classes about IC. She was excited that I offered, she was going to go and talk to a woman I'd be working with at the college and see if I can go in. I'm very excited about this. My head is spinning with ideas! LOL But I never thought about offering to go into nursing classes to have them see what IC has done to me, but also give them information about what IC actually is! This might be a way for all of us to help, find someone in a college to talk to about going in to talk to nursing students. I try to talk to them whenever I've had surgeries but sometimes I'm too medicated to do it. but you know knowledge is power and the more people know the better our chances are for a cure.

[Crystal30]

I have two friends in nursing school. I think I will ask them if they are learning about IC and if they would like me to share my story. :)

[Catwoman100780]

I think that's an awesome idea! I will probably find out Friday if I'm going to be speaking with the class. I'd like to keep it a regular thing if I can to different classes. But I'm also thinking I'd like to approach the head of nursing education at my Alma mater. I had her husband in a lot of English classes, well my last surgery I had a student from my college and she said his wife was in charge of her to make sure she was doing ok. I wanted to meet her, she came in my room and I was sleeping, but she waited around for awhile until I had woke up and came to visit me. That was awesome, he had talked about her quite a bit in classes and I finally got to meet her. It was nice for here to wait for me. But I have been thinking about going there to talk to her. I want to see how this goes for the 1st college. But talking to anyone you know as a nursing student would be great. You know if you don't get to the college your friends could do a paper on you or something along those lines to hand in or read to the class!
That's another way people could find out! I never thought of that either. I don't know any nursing students right now but you have that advantage!

Knowledge is power the more people that know about IC the greater chance we have for a cure!

[Mothergoose]

My drs office gets nursing students and Dr's while still in training from all different years, they all have to do a rural setting at some point in time.

When students are there and you make an app you pretty much have toagree to see them and then the Dr. comes in and they give a report about you etc. My Dr. often says I don't have to do this.

I am in frequently and have more than one bladder problem, if I have the extra hour to kill I will always go see the students, as I see it as my way of educating them about IC.

A few months ago a friend of mine had been back and forth to the Dr. with a stubborn UTI, she saw the student Doctor I had seen the day before, who was quite interested when I explained IC to her. she said to my friend I wonder if you have IC, and looked it up on the computer with her, and then when the Dr, came in she told him what she thought. He agreed with her that my friend may have IC and should be sent to a uro to be tested, and he started her on a couple of IC meds to try to make her more comfortable in the mean time.

I know this Dr. he is my Dr. he would have got to this idea soon, but I thought it was neat that the student had listened to me enough to have an impact on her.

After I told him that my friend had told me they were thinking she maybe has IC, he asked me which meds I found the most helpful for what symtoms, everyone is different so I think he was using this as a guideline as to what to try her on.

I then talked to her about this web site and we discussed diet at length.

MG

[Catwoman100780]

That is awesome she had listened to you and was able to help out your friend from what you had told her. I try to let the students come in with my uro. I haven't had them come in by themselves then tell the dr what's going on. But that is a really good idea! I wonder if I talk to my uro that can happen when he has students. That's really good that they do that.
I know when I was in the hospital for my last surgery I had a student from the college I graduated from, but we also had a class come in. What they did was assigned a student to every patient, some would have 2. They also had 1 student that would be the nurse in charge. I was 1 whose student had 2 patients so I didn't see her a lot. But she made 1 of my goals to go outside, my mom had started it. The nurse in charge took me in the wheelchair. When we were outside we started talking about IC. We talked for about half an hour before I got too tired and needed to go back in. I told her that the nurse assigned to me missed out. Because I just gave her a wealth of knowledge. I asked her to pass it on. I hope she did. But the students are great to work with and I hope everyone of us keeps helping the students. I know they aren't teaching a lot about IC in the colleges. I guess it's up to us!

[Snowbird]

I have talked to so many people that wonder about the care of those in nursing homes that have I.C. and have commented on all the same issues I have read here.
I also have talked to so many that are worried about that someday for themselves.
I will do all I can to get the word to nursing homes all around where I live in CO. I wil visit them as I have the disease myself with the Hunner Ulcers. I cannot imagine being in a position where you cannot speak for yourself or be heard. I have had I.C. for most of my life and along in this journey with this disease I have had to educate most medical personal I run into even in the ER as they have no clue what the disease is or diet for it. Nothing they tell me. Many tell me they will have to look the disease up as they don't know about it or have never heard of it. So the thought of some one in a nursing home is so sad to me and I want to help and do whatever I can for any and all the nursing homes I can in CO.
Please send me letters and info to help out.
Thank you so much for making this a topic and concern as many will face this someday as well.
Snowbird

[Daisy Mae]

I just sat and read most of this thread, I read until the tears filled my eyes too much to read more and had to get my composure.
I've had IC since 1994, and the only people I've come into contact with that understand it are usually either IC patients themselves or work in a urology clinic. Most nurses are not aware of it because there's little more than a paragraph in most med/surg textbooks about it.
Some of the things I read above were atrocious, horrible stories of nurses who lacked compassion and made me cringe. Please let me say they are the exception rather than the rule. People in nursing, for the most part, are in it because they love it. Trust me, there are far easier ways to make money. Nurses aren't in it for glamour, respect and power because it's not like that. Most of them are in it for the love. I know there are exceptions, there are those that should really find another way to make a living because they've become so cold and hard-hearted.
Just for a moment, please allow me to cast a different light on what most nurses are going through. They're in it for the desire to advocate for their patients. Most nurses consider it a challenge to find new and creative ways to solve problems for their patients. Many nurses lose sleep because they feel so guilty that their patients are sick and hurting.
There is extreme burnout. When a nurse goes to school for a long time to learn the rules and how to do the job, then sets out to do the best they can, they then have to hear from the patient's family member why there is a better way, why what they're doing is the wrong way, and that the rules don't matter because they want what they want when they want it.
So much of what nursing does is a process involving multiple steps and interventions toward solving patient problems and preventing further complications. It's not easy to learn, and it doesn't happen overnight.
Several years ago, nurses were able to hand out Tylenol like candy. Harmless, over-the-counter drug that's so gentle you can give it to a baby.
Then we learned that acetaminophen toxicity doesn't take excessive doses as you might think. It can happen in one day. The FDA, along with doctors, nurses and pharmaceutical researchers realized that the maximum amount of acetaminophen a body can process in one day without causing liver damage is 4 gms. That's 4,000 mgs. That's 2 extra strength tabs 4 times a day. So, if a patient has been given that dosage every 4 hours, in 16 hours the maximum dosage has been given. Anything further can do damage to the organs in as little as just one day. That leaves 8 hours that the patient cannot receive tylenol. Darvocet, vicodin, etc have to be included in this.
When an old-school physician writes an order that exceeds the 4 gm daily limit, the nurse WILL question him every time and inform him that she cannot administer this dose. If he orders it anyway, the pharmacists in the hospital will not process the order. If for some strange reason the pharmacist mistakenly pushes the order through, the nurse will not administer it.
When a nurse realizes a patient is in pain, most of them will take the time to look through the patient's medication orders and find ways to solve the pain problem. I've seen nurses suggest multiple options for pain relief, which have to be approved by the physician and pharmacist. Often these meds cannot be ordered or given due to problems like medication interactions, respiratory suppression, dangerously low blood pressure, or other reasons. Then the nurse must work out a carefully planned regimen using the maximum amounts of medication that are safe for that patient. Often this means multiple communications in a day with pharmacy and physicians. And that is for just one patient! Most people have no idea how hard nurses work to meet their patients needs. That nurse is probably not on the phone with her boyfriend or shopping online for shoes. She's probably trouble-shooting and looking for solutions online while she speaks to a physician for the 4th time this past hour.
It doesn't set well with most nurses when they are unable to find a workable solution to help the sweetest little lady in room 214B, and most nurses carry that pain with them. It hurts more than you can imagine to hang up the phone and start walking down the hall and hearing a patient's family member DEMAND that you get Grandma a tylenol when there is nothing you'd love to do more, but you know it could hurt her.
I've been a nurse for 17 years. I've been an IC patient for 18 years. As much as I hate being sick and in pain, I realize it has made me a better nurse. When you are acutely aware of a constant sensation of pain, you work even harder than normal to keep anyone else from feeling the way you do.
I struggled for so many years running to the bathroom between answering call lights and trying so hard to balance it all. What I can tell you is that I put my heart and soul into giving my patients my very best. Last October I realized, painfully, that my very best wasn't good enough any more. I was unable to cath myself in a public bathroom sitting up, and unable to lie down to let the lidocaine coat my bladder. I began missing too much work. I recently tried to return to the hospital and do some 12 hour shifts. One shift and I was in bed for 2 days after.
I will tell you this, I'm not giving up because nursing is one of the true loves of my life and it has been a pleasure to care for so many patients over the years. I have, unfortunately, met a very few nurses in all my years who should in all likelihood go ahead and retire because quite frankly they were starting to get a bit cranky. They were the exception.
I have worked with some of the most amazing nurses in my career and am so grateful for the opportunity to work with them and learn from them.
I'm so very sorry that some of you had bad experiences and I'm certain there were occasions that nurses weren't able to meet your demands, and with time so short, and floors so shortly-staffed I'm sure they were unable to take very much time to explain to you the research and rationale behind the reason they had to say no to what was requested. On behalf of all my fellow nurses I apologize and wish like crazy they had the time to make you understand, and to do so with a pleasant tone and expression every time.
Even though I'm not currently able to work, I will continue to champion the nurses out there who are giving more than most people would ever imagine to taking care of your families. I'm very proud of my colleagues and felt the need to defend them. I hope I didn't offend anyone but I just had to speak up. I've spent as much time at the bedside as I have being in the bed myself and have learned both sides of it.
A piece of friendly advice that I hope you will all find helpful is that if your needs as a patient or the needs of a family member are not being met and your questions are not answered to your satisfaction, you always have the right to speak with a charge nurse, and if the charge nurse is unable to help you, to speak with a nursing supervisor. These are nurses who work in administration and can take the time to discuss your concerns with you. It's not that the nurses on the floor don't want to take that time, but there are patients who need medications and assessment and urgent care who can't afford to wait for even the 5 or 10 minute conversation it would take. That's why we have nursing administration.
Again, I am so sorry any of you have ever had to watch your families being given substandard care. Please believe me when I say there are many of us who are devoted to finding ways to keep that from happening.

[kuntrygurl78]

dear daisy: I'm a cna in a nursing home. I work with some amazing nurses and hope to become one someday. My nurses are amazing patient advocates. With the population that I'm with, pain control is very important. I'm glad to say that as cnas we are not hesitant to do what we can ( positioning etc) and that if what we try doesn't work, we ask our nurses to use their resourses. Amen to you for being a patient advocate! I pray that you will be able to return to work someday:pray:

[Daisy Mae]

kuntry girl, thanks so much for the kind words! I was really starting to feel bad about nursing because it hurts to think we have such a horrible reputation. It was nice hearing from someone (you!) who understands. It sounds like you work very hard to give your patients the very best!
There may be ways to find shortcuts or to avoid working as hard, but the horrible feeling of looking yourself in the mirror wouldn't be worth it.
We may go home with aching feet, angry bladders, and horrible exhaustion, but knowing we gave them our best is the most rewarding feeling ever!

[Mothergoose]

I am quite sure many PTs feel a lot of appreciation for their nurses, but I am also quite sure many don't express it for variuos reasons, how much they appreciate them.

Like most other things one nurse that is not good at her job and word spreads like wild fire, but a good one goes unapplauded.

When you go to the Dr's office, ER, or hospital what ever the setting is often the way we feel when we come away from it is heavily weighed by how we were treated, by everyone, the front end staff, the nurse, and the Docs.

A good nurse who understands your needs really does make all the difference in the end result.

Nurses have a very important job and a good nurse in invaluable.

MG

[scarlett0]

thank you all for your loving words about nurses. we do have a tough job, but i couldn't imagine doing anything else. i did 2 years of a 4 year degree with a major in social work and a minor in geriatrics, and quit college to continue to be a cna. i've never regretted that decision. i made the dean's list and all that jazz, but my heart wasn't in doing the paperwork and having to tell families that i couldn't help them because of some ridiculous law. i loved being hands on with my people. i just lost a dear, dear resident, and when my hall partner and i went to his funeral, the family kept hugging and thanking us. the son even mentioned us in his eulogy, which brought us to tears. i can't think of a better way to spend my working years than with my residents.

i have emailed my director of nursing, and reminded her of our talks about my letter on ic. last september, she spoke to me about it, and i educated her on the condition, logging on to this site and showing her pics of bladders and such. she was amazed that i worked in this field in the amount of pain i was in. she also agreed that it was important to pass on this information to staff, but at that time, there were a lot of financial changes being made and some staff being laid off. she felt that it would not be well received then, because staff were worried about their own financial matters and such. unfortunately, the letter she wanted to draft and give to all staff was delayed. i told her that i was fine with her using my name and story, so people could come and ask me questions - i educate whoever i can on ic anyway. anyhoo, i told her early about this so i can help her draft the letter to staff if needed. unfortunately, i received to answer to any of the other 12 letters i sent to other homes. whether they were in the same boat as us with the financial mess (the gov't was reducing funding again) and that reduced interest, i don't know. i did give my contact info, but to no avail.

any ideas on another type of approach would be greatly appreciated.

thanks!!!!