Disclaimer: I am hesitant to post this because I don’t want anyone to think I am intolerant of different religions or lifestyles. I am not. But I am having a difficult time when they are thrust upon me in my own home.
Finally this week I just broke down sobbing because I came to realize what I am exposing my children and family to. I am beside myself with having hired caregivers in my home. I need them desperately to care for my husband, but I also need them to butt out of our family life. After finding out some disturbing things the past couple of weeks plus a major blow up with a nurse yesterday, I just don’t know how much more I can take. I am sad and heartsick that I have to expose my children to this cast of characters. I know the easy answer that everyone always says is…get rid of them and find new ones. Well news flash, the new ones might be just as bad or worse. Right now I feel like a stranger in my own home. Your home is supposed to be the safe place to fall, a sanctuary, and a nest of security for your children. I don’t think I am providing that for my kids.
The major issues I have are not necessarily with the care they give my husband, it is how they intrude on our lives. We have a gay nurse, and I recently became aware that he has posted pornographic pictures of himself on a gay male networking site. He had his computer here one night and my boys saw the site however not the pictures. Plus his profile lists all the things he is “in to”, and I actually don’t even know what they all mean. Maybe I am living in the past, but to me this shows a total lack of judgment and it scares me to think it might have more implications than just trying to find a new partner. This really isn’t a gay thing because I have known for sometime that he is gay and that isn’t the problem. I would feel exactly the same way if the pictures and profile were on a straight networking site.
Another example, we also have a nurse that is a member of what I’ll call non-mainstream religion. In fact, many would say it is a sort of cult. Although we are devout in our own faith, religiously we are very tolerant of other faiths. However, she brings her faith into our home with leaving leaflets, giving the kids books, constantly judging our faith and there is always that trying to help us to understand “what the Bible REALLY means.”
I know kids have to understand that the world is made up of all sorts, but when all those sorts are brought into your home it feels different. I feel like a guest in my house. I guess partly that comes from me trying not to offend these people and their beliefs. When nurse #1 comes, I am always cautioning the boys not to say “That is so gay.” which is standard middle school terminology these days. When nurse #2 is here, we can’t play Christmas carols, say God Bless You at a sneeze, or carry on any holiday traditions because she finds that offensive.
I think about my paying job, I have no idea the sexual orientation of the people sitting around me. I don’t know what their religious beliefs are. I don’t know if they had sex last night with their mates. That stuff just doesn’t come up because we are busy doing a job and acting professional. But when our home becomes the workplace, my family hears all of this. The big blow up on Friday was when nurse 2 was flabbergasted when I opened this package I had ordered for my nephew. It was a shirt with his Greek letters on it, Alpha, Tau, Omega. She started into the Alpha and Omega as God and that I needed to research what Tau was because I would find it very interesting. No I wouldn’t. They are Frat letters nothing more. No satanic meaning, just a fraternity. I was in a sorority so I get the whole Greek thing, but am I required to defend that to my husband’s nurse. This type of stuff goes on day in and day out.
When my husband first came home from the hospital we had a CNA that worked for us a couple of months. Last year she was arrested at the hospital where she works for biting an autistic child while trying to draw his blood. I was nearly sick when I saw her mug shot on the evening news. This woman was in my house three times a week while my kids were home for the summer. What am I doing to my family? This is tearing me apart. I feel like I am living inside some sort of circus freak show, and I just don’t know what to do.
FF:
I agree in principle with everything you have said. It seems like there should be rules and these people should follow them. However, in practice, this never seems to happen. All of our nurses are from an agency and when I say nurses I mean just that. All of these folks are either LPNs or RNs. The problem I see is that home care nursing is so competitive now. It is like a competition to get the nurses to work at your house. There are more clients than nurses, and they are allowed to pick and choose where they go. If you are the house with all the rules, the wife with all the issues, or have the kids from hell no nurses will agree to come.
When my husband first came home from rehab, we used another agency and that was horrible. I was naive and clueless back then. Soon we switched to probably the best agency in the city. The nurses like to work at nice houses, with prominent people, and like to get the perks. Why would they work here with all my rules when they can go to the next place where there are no rules? If I try to lay down the law and ask for the things you mention, they think I am nasty, picky, and demanding. You get that reputation and then you get no nurses.
I communicate regularly with the director of nursing at the agency, but if I called him over all of these issues that made me uncomfortable then they would probably drop us as a client and they're the best game in town. I guess that is what I am trying to express. I feel like I am a hostage to these nurses or in a blackmail situation. I put up with things and allow things that are really against my core because it seems like this is how you have to play the game. I ignore comments, behavior, and intrusive remarks because I so desperately need help caring for my husband.
Just off the top of my head I have terminated and reported the following nurses for the listed behavior :
LPN that used profanity in our home plus come to work after being out all night drinking and thought is was funny when she told me she drove home drunk at 5:00 am. Oh, she also asked me what it was like to have sex with a paralyzed man.
LPN that talked to me for the first hour he was here about all his health issues and herniated disks and how he was going to school because his Dr. told him he had to get out of nursing because of his health issues. He was just doing the home care thing to put himself through school. Gee whiz, wonder how he is going to effectively care for my husband who is a C3 quad?
RN nit wit that was just clueless. Never remembered to put the head of the bed up when trying to give my husband a drink and instead poured water on him constantly. Was totally content to watch me work when I thought I was supposed to be training him. And he was so dim that when he left the house one day, he walked into the front closet instead of out the front door which is obvious due to the slide lights.
RN lady that left after a half shift crying because she couldn’t believe that people lived at home with such serious medical issues. It was her first day with the agency after working 10 years in a radiology office.
I guess this is what has me so sad. I am exposing my family to a situation that is not OK with me really, but I allow it because there is no other way to play this game. I have private hired, multiple agency hired and it is all the same, the same damn game.
In our past life we employed a nanny for our kids and that relationship worked just as you described. We had a contract which outlined acceptable behaviors and rules of our house. We had the same nanny for 5 years and never an issue. However, this doesn’t seem to work with home care nurses. Mostly I handle it with these people, but some days it is more than I can stand.
Trish I have been wanting to reply to this for a few days but haven't been able to find the words.
And unfortunately right now I am short on time so can only write briefly. I will come back because I have some thoughts. Not particularly anything that will be helpful, but I did want to let you know I do understand the feelings behind your post all too well.
I think for me one of the worst aspects of my injury, if one takes away the physical side of things, is the feeling that my home is not my own. Even with very good, professionally minded nurses that I get along well with (and I have had a few of these, unfortunately less than I would like right now), I can never get used to the feeling that my apartment is my home because I have to have what are essentially strangers around so often. And even when we are able to develop a good rapport and relationship, I still struggle with feeling like I have to walk around on eggshells in my own home very often so as not to unintentionally hurt or offend anyone or have them become involved in personal things I would rather they didn't. That is a poor choice of words with "walk on eggshells" but I don't know any other way to describe the feeling. And the truth is that I know my friends and family very often feel similar when they visit. It is hard to act normal and carry on with a visit or conversation when there is a nurse sitting in the room.
Anyways I have really struggled to feel like I have contol in my own home. Even when I lay out clear expectations and rules, inevitably somebody will break them. It leaves me feeling very vulnerable. Not physically, but emotionally. I don't know if that makes sense. My situation is much different from yours in that I don't have kids and I can see that would add a much higher level of stress into the equation when it comes to having paid staff in your home. I have a very superficial understanding of it though-- a few months ago my sister left my nephew with me while she ran to do some errands for me. He is 10 and old enough that the nurse didn't need to bother with him. He frequently spends time alone with me at my place. He asked me if he could make some juice--something he has done before at my place--and low and behold this is the one time he managed to spill 2 liters of grape juice all over the kitchen floor. My nurse went ballistic on him. I was afraid she might hit him. That scared me more than anything because I knew there was absolutely nothing I could do to stop her if she did try to hit him. I felt so helpless. And so angry at her.
She was out of line on in so many ways and I wanted her out of my house that instant. The fact is it was a lot of juice and a big mess but it wasn't really that big of a deal. My nephew could have been directed (by me) to clean it up on his own and my sister would have helped when she got back. Instead it turned into her screaming at him, calling him a brat, and then him having a massive melt down and escalating to the point I couldn't get him back under control (he has aspberger's syndrome and doesn't deal well with things with screaming). Which made the nurse just freak out at him and me even more. It was at that point that I realized I really needed to crack down on things in terms of making sure the nurses understood that my apartment was not a hosptial setting but my home and that they needed to treat it as such. I don't want to paint all home care RNs and LPNs (which is what I use for my care) with the same brush. I have had excellent ones. But my experience has not really on the whole been very positive with feeling like my home or I are being respected.
Anyway the point of that long story, I do get it. I just wish I had some kind of answers for you.
Dear Trish,
I hate to agree with you but you are living inside of some sort of circus freak show! I have lived there and I thought about writing a book about my experiences, but I don't think I could tolerate reliving them. At the time of my accident my little girls were five and six years old and their mother had a pretty severe clinical depression and was not all that involved. I would find nurses in my daughters rooms telling them about how they would go to hell if they didn't believe in Jesus (we are Jewish) and a nurse who hollered at me in front of the family because she wasn't invited to our Thanksgiving dinner! And the stories about drugs and sex will be told posthumously, thank you. Yes, a circus. And most of the performers were people who had no idea about boundaries. So they wanted my family to become their family or me to become their son or father or something other than who I was. So they get fired. Over and over and over. It was awful.
Fast forward to today. I live alone and have seven nurses sharing time to cover me around the clock (I have great insurance). Cassandra has been with me for 22 years. As she said it: "our relationship has lasted longer than both of her marriages!" My next longest nurse is 17 years and the newcomer has been with me nine years. I know that my situation is unusual in that few are as fortunate as I am. But like everything else, when I feel like I am in hell, I have to do what I can and have faith that suffering is temporary.
When I orient new nurses (despite having regulars, I often have to orient temporary nurses), not only do I talk about my boundaries and expectations, I talk about theirs. Medical stuff aside, if we are lucky and this works out, it will be a relationship with needs and expectations on both sides. To the extent that we are able to verbalize them, it helps to have everything on the table up front. That way we both have a better sense right in the beginning if we can work together.
And by the way, my girls were never harmed psychologically and I doubt that they would be. Having a weird people offer them unsolicited advice every now and then really doesn't have much of an impact as long as they knew that I was getting rid of those people. On the other hand, two of my nurses have become mother figures for them and even now as adults, they still call my nurses for advice.
I have lived with two women since my wife left, and all three have run into conflicts with my nurses. It takes time for nurses to learn about home health care and it takes time for them to learn about your family system. It's terribly important for your nurses to understand that this is your home and it is their temporary workplace. My God, you/we all feel powerless enough we must have a sense of control of our own homes.
Dan
Finally…..I got Dr. Gottlieb to agree with me. I guess it helps me to know that his phenomenon isn’t isolated to my home. I think I could write a book too. It would be halfway funny if it wasn’t so serious. I think you must be correct; these folks want to become part of the family. I have the most issues with the ones that seem to really have a lot of family turmoil in their own lives. One of them even told me “you guys are all I have.” I think what has happened is that over the years I have gotten worn down with training and trying to enforce the rules. We have a couple of nurses that have worked for us going on 5 years now. Mostly they are good people except when I feel like they are intruding on my family and the boundaries are getting blurry.
I remember the first time I had to fire a nurse on the spot. She was an RN and came in for duty and proceeded to go back into my husband’s bedroom. She lay down on my bed and got on her cell phone. I was on my way out the door to take my oldest son to his very first band concert. I walked in the room and said I’m leaving now you’ll have to go into the kitchen incase he needs anything. She said “I’ll be along shortly.” I said, I need you to go out there right now. She said…”I told you, I’ll be along shortly.” Well that was it. I told her to hang up the phone, get out of my bed and get the hell out of my house. It was the hardest thing to do. My son is standing there waiting to go to his band concert, and I am entangled in this altercation with the nurse from hell, but I did it anyway. I know she thought I needed her too bad to let her go like that, but I was furious.
After that I remember telling my parents about the incident. I really was upset. My dad then gave me a great life lesson. My father was(he’s retired now) a shrewd and successful businessman. He owned his own company and they had a company plane. He and my mother had flown out to California with some other business colleagues. The night before they were to fly home, their company pilot was spied drinking it up at the hotel bar into the wee hours of the morning just prior to their early morning return trip home. Someone alerted my father, and he fired the pilot on the spot. They were stuck in California with no pilot to fly them and their plane home. My dad said it was one of the easiest decisions he made although it put him in one of the toughest situations. That’s how I feel. The decision is easy; the ramifications are difficult. I just wish I could act as decisively as my dad does.
I’m glad you say this didn’t really hurt your girls. I have visions of my kids publishing some book in 20 years called “My Childhood was no Fairy Tale: It was a Circus Freak Show and p.s. It’s All my Mom’s Fault.”
Trish,
I don't know how helpful I can be, but I thought I could add a little to the conversation. First of all, I don't think for a minute, you should worry that you sound intolerant. I happen to be gay, and I was not at all offended, because you obviously realize that gay is not the problem, rather the behavior of your nurse who happens to be gay IS A MAJOR PROBLEM. In my opinion, it is never appropriate for someone to talk to a child about lifestyles, religion, etc without the parents' permission and without the parent present. Also, "gay" as used in the tween/teen slang may offend some people, but I do not know any of my friends who are offended by a middle schooler saying, "That's so gay!"
All I can really offer you is some empathy. My mother is the sole caregiver for my paralyzed father. I don't know which of my parents I worry about more. Because my mother so fiercely dislikes the intrusion on her home, she has shouldered all the responsibility for my dad's care for 4 years now. I live in a whole other region of the country and feel guilty all the time that I cannot be there more to help. Getting my mom to accept help is a battle.
I know that if you say something to these nurses and aides that you run the chance of alienating them, but if you explain the problem to them the same way you did here and they are offended or hurt, then they are not rational people, and you may be better off taking your chances with someone new. Don't think that I say that lightly, because I know how hard it is to find good help. I guess I'm just trying to say that if it helps in the smallest way, know that you are not alone in your struggle.
hazelstarfish,
Thanks for your comments. I am glad I was not offensive, and I hope nobody took it that way. My middle school kids say all kinds of things now that look like they're aimed at a group, but I don't think they mean it that way at all. The new thing they say is "Oh Bob Sag-IT." I don't even really get this one. I am assuming it has to do with "the Bob Saget" but I don't even think they know who Bob Saget is. Go figure!
I can understand your mom's dislike of the intrusion. You certainly have to weigh the aspects of doing the caregiving yourself verses having all sorts in your home. After the accident, I left my job and stayed with my husband during his 9 months of hospitalization. Once he came home, I took over all the caregiving and attempted to train caregivers which seemed like a never ending task. They were here one day, gone the next. I felt very alone, confined, and really was getting angry at my husband because it felt like my life had ended. It is hard to be a loving wife, mother, and caregiver when you are so very unhappy and exhausted. My entire life was all about his SCI.
After he was home for about 6 months, my old boss at work called me and begged me to fill in for six weeks while a coworker was on a leave. I had just started training a group of nurses from a new agency and finally had 3 days/8 hours covered by some pretty reliable nurses. I agreed to go back as a contract on this temporary assignment. After the six weeks ended, I was asked to stay on for a while. I was so much happier going back to work and my husband was happier too. I think we both needed our space. Anyway, fast forward, I eventually returned to a full fledge company employee again (part-time though) and got my prior years of service reinstated. Jan 2 will be my 18 year anniversary with the company. Right now, I need to have reliable nurses so that I can continue to work, but it does come with a price. For us, my job has really helped to redefine the roles in our family. My husband stays home now and does the best he can to take care of the household stuff like grocery shopping, Wal-marting, and anything else he feels up to, and I have my time away at a job I really love.
This weekend was a little difficult. One of our sons was very sick, you know when they throw up about every 30 minutes all through the night. To top it off, we only had 6 hours of nursing coverage over the weekend, and the nurse failed to show up. Even though it was hairy for a bit, it was almost a relief to be home alone with just us. We could be oursleves with no one else watching or commenting. Our sick son could mope around in his underware and it didn't matter. Looking back, I really think we needed a break from our nurses, and we got it this weekend.
Thanks again for your comments.
I don't know if anyone appreciates the complexity of these relationships. I am C5-6 and I live alone with 24-hour nursing. The "nurses room" is in the basement so that I can have a boundary. When I sleep, we have a buzzer in the nurses room connected to a doorbell near my bed. So when I need my nurse, I push the doorbell to ring the buzzer downstairs. If my nurse doesn't come up in a couple of minutes, my mind starts to race: "did the buzzer work? Is she okay? Will I have to lay here all night being cold/uncomfortable whenever?" All of this anxiety can crop up in just a couple of minutes. And what does it all mean? It speaks to the level of our dependency on our caretakers. And with dependency goes anxiety and insecurity and often resentment. And we can feel that towards the good ones! Life itself has just put us all out of control and now we have these "outsiders" in our homes reminding us of that fact everyday. Nobody knows, but we do. Thank goodness for these posts so that we can all talk with people who understand.But I wonder what it's like for these nurses and aides walking in to strange homes with strange disabilities and unique ways of coping (or not) with those disabilities. Today's healthcare providers are taught a bit about compassion and trying to hear what the family needs. But I wonder if they are taught to identify their own feelings -- their anxieties and insecurities? I wonder if they are even given permission to have these emotions. I went to a seminar once for home health care providers and the lecturer said "you may be uncomfortable or nervous, but you dare not show it as you must appear competent and in charge at all times."
So here we are. We look at these people wondering if they will help us or interfere with our lives. And we can only wonder what they think when they look at us. Two humans with very human emotions both of whom being uncomfortable to acknowledge let alone express those emotions to one another. Maybe I'm naïve, but it could only help.
Hippocrates once said that inside of every patient is a doctor who can't heal them. Gottlieb says inside of every healer is a patient who is vulnerable and needs care and unless all four of those elements and counter each other with integrity, there will be dishonesty.
Take care everyone and happy holidays. See you next week!Dan
Hi there,
I am so sorry to hear of your very difficult time. I am currently my husbands caregiver, he was shot in the neck in Iraq and is a C3 quad.
I only have a few words of advise for you because I know all too well how difficult it is to find and keep good help. I would say make a plan, sit down with them and tell them you prefer that they keep their personal beliefs to themself....especially because it can be so difficult to raise your children when someone else is putting things in their head. I can't imagine being in your position, I stay home with my husband and am his full time caregiver during the day, we do however have someone that comes to our house each day to do his program and shower and up into the chair, I would be appauled if he ever tried to push his beliefs onto me or my husband or family. I would suggest that if they are through an agency, you talk with the HR department and they may be able to help you have that difficult conversation. Take back your life and your home...you deserve to feel at home in your own house.
If you ever want to just talk, you can always email me to vent. My email is thekeils@yahoo.com, to give you an idea of who we are you can look at www.caringbridge.org/visit/matthewkeil
Take Care, good luck and TAKE CHARGE!!! I am sure you took charge of his care when he was in the hospital....so take it back like you did with those nurses.
Tracy
Oh, if only this worked. :( I could talk, admonish, write contracts, shake my finger, and be tough as nails until the end of time and we would still have all the same problems. We have done background checks, personally have checked references, have a written contract, in short: have done everything right. But people are still stupid people and there's nothing you can other than fire them, which means you're back to doing it yourself. I get really frustrated being told all of the things I should do re: PCAs and poor behavior/work performance when I know them, and do them. And nothing changes. :(
This, along with having no money to pay a PCA right now, is why we don't have a PCA. I HATE the feeling of not being able to live in my own house without accomodating another person (whom I don't like usually) behavior.
Maybe I made a difference…
Finally things came to a head with the male nurse, not about his sexuality but about his job performance. He has worked for us nearly 4 years and does one overnight shift a week. He broke up with his partner in a bitter battle this summer and everything changed. The last straw occurred just over a month ago.
He had been at our house for about 3 hours of his 12 hour shift; had given my husband a shower and had gotten him into bed. He was basically in monitoring mode but still needed to give some medication and things like that. Just at 11:00 pm, I heard my husband calling him. I waited for a couple of minutes, still no response from the nurse. So I’m thinking he is either ignoring my husband on purpose or he has forgotten to turn on the monitor. I head downstairs. My husband is still calling and I can hear that the monitor is working. I see that the nurse is sound asleep on the sofa. It looks like he has just crashed. He had a plate of food setting on the sofa cushion next to him and his head is tilted back and he is sound asleep. I call his name a couple of times and this still does not wake him up. Finally I have to use both of my hands on his shoulder and shake him awake. At this point I am just totally furious. I had suspected that he had been sleeping on the job but this is the first time I had managed to actually catch him asleep. The guy wakes up and is stunned that I have caught him asleep like that. He is just sitting with his head in his hands. I start in on him in a very aggressive and nasty way, but I can see the guy is really hurting. I decided to just sit and talk to this guy in a more compassionate way.
I sat down next to him on our sofa and told him that I was really worried about him. I told him I was upset because he was putting my husband’s life at risk plus letting me down but mostly that I thought there was something wrong with him and he needed some help. He only works for us one night a week, the other nights he has other cases of vent dependant kids. I told him he was going to kill someone, devastate a family and in the process destroy his own life. We talked for about 30 minutes, and he finally admitted that he also felt he had a problem. I sent him home that night and called the director of nursing at the agency.
Ultimately he was ordered and agreed to get some help. We went to a stress center for a couple of weeks and has started an intensive counseling program and has joined a group on co-dependency. Only recently has he been back to our house on a very limited and controlled basis. I have been working with the nursing director to slowly let him resume his hours here. The thing is..I really like this guy. He is a good nurse. He did a great job for the first few years.
I guess the reward in this whole situation came last night when he told me thanks. He said until he got some help he didn’t realize that his problems were so severe. He didn’t go into a whole lot and it isn’t any of my business, he only wanted to tell me thanks for caring and, in a way, he was glad that things happened as they did.
Hi JayMac,
Thanks for your comments and suggestions. I am very glad that your dad recovered from his injury. You’re right, he was a lucky guy. Unfortunately perseverance and motivation don’t always lead to recovery like your father had. I think if that is all it took, then there wouldn’t be too many SCI folks left in wheelchairs. I know so many that have incredible motivation and have persevered through many many years of paralysis but still do not recover any movement or sensation.
That is one thing I hate about discussion boards, it is hard to accurately convey your situation in writing and it seem like people sometimes get the wrong idea. We have been dealing with my husband’s paralysis for nearly 7 years now. His SCI injury is very severe. In addition, he also suffered a traumatic brain injury which makes things that much more complicated. He requires 24/7 care. He has no movement below the neck at all. He has a trach and a paralyzed vocal cord which makes talking and eating a challenge too. He has paralysis to the nerves in one eye which causes him double vision plus the TBI has caused him some short term memory loss and left him with the inability to communicate as he once did. I wish it was as simple as he just can’t move.
Like you suggest, the kids try to spend time with him doing the things that he can do like movies, playing on the computer…stuff like that. But what has really impacted them is the lack of adventure and spontaneity that our family has lost. We can’t do anything on the spur of the moment. Everything has to be 100% planned well in advance to ensure that my husband’s complicated needs are met. There are no more spring breaks, no family summer vacations, no camping trips. Their lives have been totally limited by their dad’s needs. Some weeks it is even hard to get them to a movie. Taking him and the kids on a vacation with all of the equipment, supplies, special accommodations that would be needed is almost impossible. Plus, we don’t really have the option of me just taking off with the boys because I do most of my husband’s care. We have about 50 hours of nursing care a week, and he requires around the clock care so that leaves me providing the other 118 hours a week. Especially in the winter when there is snow, ice, and rain, it makes getting my husband out nearly impossible so then we all end up feeling confined to our house. I think it is certainly an adjustment that would be difficult for any teenager especially when our life was so different before.
I try not to think of all the things that the kids are missing with their dad but that is the fact. Our oldest son is going to turn 15 in a few months and was wishing for someone to take him out driving before he has to take driver’s Ed. Unfortunately that is one thing their dad can’t do now. We have managed through these challenges as one of his uncles took him out this weekend, but for a kid, it is not the same as having dad there at this milestone in a teen’s life. Don’t get me wrong, I’m not trying to say that life is terrible and the kids are suffering, I’m only pointing out that their life is not what either I or their dad had imagined for them. Sometimes your dreams don’t always come true.
