I've said before that I get a lot more emails than comments. People email me their stories that they don't want to put on the web, because, alas! they have me to do it for them. I've gotten a lot of questions about D's health. Much of it is in the archives and I understand not being able or willing to go back through and read all that. People have written to me about their family members that they are taking care of and what conflicts they have gotten into with their families. One person in particular that I have had a lot of interaction with was also blamed for her father's leg amputation by other family members. I'm going to try to wrap all that into one big, mammoth post. Feel free to skip around and skim at will. Some info to catch everyone up on D's health situation, what happened with D's foot and whether I could have done anything to prevent it, and some of my thoughts on the role and responsibilities of caregivers in general. These are tough topics, and writing about them for me is a bit of a minefield. But I'll do my best to be accurate and fair and honest about it all.
Quadriplegic Skin 101
Pressure sores and skin ulcers are a common problem for anyone who lacks the ability to feel, move or has poor circulation. They say that a pressure sore can occur in less than 20 minutes. As healthy people go about their day, they make a thousand little unconscious adjustments that prevent pressure sores. You may feel a rock in your shoe or even a weird fold in your socks so you reach down and fix it. You've been sitting in a chair too long so you shift your weight from one side to the other. Your bra is bugging you so you inconspicuously make a little adjustment. Your underwear is driving you nuts so you go to the bathroom and do a full-fledged mining expedition. You scratch your elbow because your sweater is itchy. What if you could feel none of these things? What if you couldn't move to do anything about them anyway? If this were the case, every single one of those subconsciously minor annoyances would quickly turn into a pressure sore. If the sore was left untreated for too long and got infected, you could find yourself in a life-threatening situation really fast. If on top of that, you have poor circulation (because you are unable to move much or you are a diabetic or other reasons) your body is going to have a terrible time healing as well.
People at risk for pressure sores are taught to be vigilant in looking at their skin and trying to prevent pressure sores. They have special mirrors for them to examine their skin with. They are taught to always check for folds in their socks and clothing, rocks in their shoes, etc. They sit on very high tech wheelchair cushions that are made of air or gel to help prevent pressure sores. If they are able, they are taught to do weight shifts to divide the pressure of sitting around. If they are not able to weight shift, they have wheelchairs that automatically tilt back and up in different ways to relieve pressure. Many times, pressure sores are preventable or if they occur and are found quickly, they can be easily treated. Sometimes, though, they are not easily prevented or treated and can get away from you.
Back Where it Started with D
D had some minor pressure sores over the years that were easily treated. Then, in around 2001 or so, he became ill with no noticeable pressure sore. Due to a variety of factors, I moved in with D in the fall of 2001. I was working full-time and doing an internship in an attempt to change careers to my "Dream Career" and wanted to minimize some of my expenses. D was sick and having trouble finding steady attendant care. So, I moved in so my rent would be halved and with the idea that I would help out until he got a better attendant situation. It was never supposed to be a permanent thing. I had plans. Within weeks of moving in with him, I noticed how terribly sick he was and how little he was doing about it. He didn't eat and he slept nearly 22 hours a day. I thought at the time that he was beyond being able to take care of himself. He was too sick to manage the things he needed to to get the help that he needed. So I decided to basically manage everything for him. I started by actually having what we jokingly called "the intervention." I had a meeting with all his family members and basically did a person-centered-planning type deal to map out what needed to be done and who was going to do it. There was poster board and everything. (This sounds like such a great idea...but if you do this, realize that people are going to do anywhere from 3/4ths to absolutely none of what they say they are going to do to help. Don't get yourself into a management nightmare here. It does help people better understand what you are dealing with, though.)
In any case, I called nurses and doctors and did research and made plane reservations and went to Denver three times and got sick and ended up in the hospital myself taking care of him. What it ended up being was that he had developed a pressure sore from inside his body that wasn't visible to the outside at first. And then when it was, it was very small sore. Like seeing only the tip of the iceberg. It was caused by a process called shearing. This is when a prominent bone shears against the skin from the inside. We think it was because he had been using this regular old mattress that he got from his parent's storage unit. Every time he sat up or laid down in bed, his coccyx bone (butt bone) sheared against his skin. D is a bit prone to this because he is tall and thin. This sore was infected because the bone was infected underneath. The bone infection was actually eating away at the bone, making jagged parts on the bone which made it worse. To complicate matters, D had developed what is called "cachexia" or wasting disease. This is something that people with end stage cancer or AIDS sometimes get. It is when your body stops using the nutrients you get through food. The illness just takes them all and wastes them away. This is an end of life phenomenon and is why some very sick people have that ashen, skinny, sunken eyed look.
So, we didn't find much help from available medical resources locally. We went to Craig Hospital in Denver for the majority of the treatment. We went in March of 2002 and laid out a plan. He came back home and had a debridement surgery, got on IV antibiotics, and got on a wound vac. I did about 95% of his care during those months. I did the IV stuff and sometimes in a crunch I changed the wound vac dressings, which is tricky, and let me tell you, this sore was huge and deep. I saw exposed bone. We waited for his infection to clear for him to maybe gain some weight until June, when he went back to Craig Hospital and had a skin flap surgery. This is when they actually take muscle and skin and put it over the wound. I remember flying into Denver with him and my guide dog and his wound vac and PICC line. Fun to get through security, let me tell you. That was back right after 9/11 when the National Guard was still at the airports. Anyway, the wound vac had stopped working during flight, the seat was bothering him, and for some weird reason, he became allergic to his shirt he was wearing and had hives all over where the shirt was. He weighed 103 pounds. He started going into what is called autonomic dysreflexia, which is kind of like being shocky. The plane was descending and he was absolutely this putrid shade of green and was having trouble breathing. We were in our descent, but I thought we weren't going to make it, and I even made arrangements for the airport paramedics to meet us at the gate. It was one of the most nerve wracking times I have ever experienced. He did seem to recover a bit once we landed and we were able to make it too the hospital ok.
So, at Craig, he had the flap surgery and was there for about 2 months for recovery. I did not stay the whole time. I came back home to work, but I developed pneumonia and MRSA, the infection that D had. I ended up being in the hospital myself for a couple of days. I took a cab to an urgent care and they took me to the hospital. I told no one except my work where I was. I just needed a break.
In late August, I went back to Craig to pick D up and bring him home. I was only supposed to be there a few days, but they kept him in unexpectedly for two more weeks. My job was unbelievably understanding about my situation and I could work anywhere using D's laptop. But it did become very challenging to get things back to them when computers weren't working or networks were down or whatever. And of course you are missing phone calls and meetings and stuff. My other job, my hospital job at the Children's hospital really took a beating, though. I could not work for them while I was being treated for MRSA. I missed over six weeks of work.
D came home fatter and much healthier and recovered. I think we learned a lot from the experience. Craig Hospital was very good to us and taught us a lot about the whole pressure sore deal and all the things that can go wrong. I think we were a little uneducated about it when we started, but we came out of it armed with a whole plethora of new skills and information that would hopefully prevent anything this bad ever happening again. We knew that any skin problem, no matter how minor it looked, needed to be treated aggressively right away. We knew much more about the role of nutrition and how to avoid cachectic type situations in the future. We both vowed that it would never happen again.
Both my jobs were in jeopardy after that and I knew that I was going to have to recommit myself to my career to get back on track. I got invited to spend a few days in an online friend's bed and breakfast in Eugene for a few days. I really needed that time to refuel and get back into life again. I had a meeting at work when I came back to try to get myself on some new grant-funded projects. The second day I was in Eugene, my mother called me and told me she had terminal brain cancer. I had no idea what to tell the people at work. I think that kind of just knocked the gust out of my sails and since I didn't know whether I could commit to good attendance, I was not picked up for any grants. I went home and spent 2 months with my mother. I don't regret it.
I'm telling you all this because I want you to see the context of this whole story. I stopped my whole life to help D. It was my choice and I don't regret it. But it was a one-time thing due to extenuating circumstances. It was as if D took an unexpected fall and I caught him out of it, but I was never supposed to be a permanent net. I think that he was blindsided by his illness and if someone hadn't have stepped in and managed the whole thing, he might be dead by now. I don't need a medal for it or anything. But I did need D to do what he could to manage his own health in the future.
The Foot Thing
So, healthwise for D, things went along fine for the next couple of years. I moved on. I was doing part-time contract work. It seemed like not working full-time was maybe a bit of a blessing. I was able to visit my mother three more times before she died. After that, I was going to continue to try to get pregnant. I had started the process in early 2002 before D or my mother got ill. D was going back to school and working and was doing well. When I got pregnant in 2004, D and I happily went through the pg together. He did have some minor pressure sores during that time, but was able to get them taken care of. In late 2004, during my very pg months and eye surgeries, D had accidentally scraped his leg and caused a pretty bad sore. But his home health nurse was treating it and it seemed okay. I was actually there when his nurse sort of signed off on it being healed and that it needed no further treatment. This was in early 2005.
Here is how D's home health care works: A nurse comes about once a month no matter what. She does an assessment of D where she takes his vitals and goes through a question and answer thing and asks him if he is having any problems. She also changes his catheter during that visit. She does not make him strip down naked and do a whole exam unless he tells her there is something he wants her to look at. If he has ANY problems, he can call her at any time day or night and she will either treat it herself or get him into a doctor for treatment. She also refers him to specialists like physical therapists or wound care specialists. When he has a wound, she looks at it and decides whether she can treat it or whether the wound care nurse needs to come. If the wound care nurse comes, he decides whether he can treat it or whether a doctor needs to be seen. Most of the time, it can be handled with the wound care nurse. Now, one thing I think people don't understand is that treating wounds is very high tech. It isn't just some neosporin and a gauze bandage. They have stuff made from silver and special duoderm bandages that are practically like artificial skin. They pack the wound with these little worm-like things that absorb fluids. They use these charcoal type foam and a wound vac to drain it. It is all quite complicated and out of my area of expertise. As a CNA/union caregiver I am only allowed to do certain tasks. For health related stuff, I work under the supervision of home health. I am not even allowed to clip his nails! We cheat a bit on some of this stuff, but I would NEVER mess with a wound dressing that the nurses put on unless it was an emergency like that the whole thing had come off. And only then, would I dress it with sterile gauze until they would come fix it. When D has a wound, they come almost every day and take care of it. Often, I don't even see the wound unless I am there when they are changing the dressing.
So, back to our little foot chronology. (I know this is like I'm giving a deposition. Just trying to get all the facts down on paper.) During late 2004, early 2005 when D had the leg scrape wound, he started wearing ace bandages on his legs in lieu of those white support hose that help with poor circulation. He said that he and his nurses found that these ace bandages helped with circulation just as well and were easier to get over the wound dressings.
In spring of 2005, D told me that he had some small pressure sores on his feet and that the nurses were taking care of them. I had not been working for D from November 22 to early February because I was on "maternity leave." I actually arranged a replacement for me with a guy that helped us out when D broke his leg the previous summer. All D had to do was call him and make arrangements. I was going to pay him out of my salary. D never called him and made arrangements. I started working for him again on February 8th. I was going over three afternoons a week and doing whatever he wanted me to do. He was mostly asking me to do cooking and cleaning and organizing and techy stuff at the time, and just a few personal care things. D can do most of his own personal care, it just takes a long time. But sometimes he goes through phases where he likes to do it himself. He always had the ace bandages on and he said the nurses were taking care of that. When I'm there as attendant, I do what I'm told. I'm just the extension of his arms and legs. I'm not a mommy or babysitter. He never asked me to look at his feet, never asked me to help care for them, never acted like there was a problem.
I thought that his feet were getting worse by summer. I thought that something was going wrong. But when I asked him about it, he just said that they were having trouble healing but they were on top of it. In early July, we went to the kids' pediatrician for their well baby check up. The pediatrician expressed concern over D's bandaged feet and said he smelled infection. I was kind of embarrassed about it and a little annoyed because this ped is always more interested in our disabilities than my kids. I also always try to portray us as good responsible parents and not people who are neglecting big, gaping infectious holes in our bodies. So we just kind of blew the guy off and said everything was fine.
That same afternoon, this pediatrician's nurse called me. She said that the doctor thought we were embarrassed about the foot deal and didn't want to talk about it, but that he was very concerned and wanted her to talk to us about it. She said that the doctor said that he smelled necrotic tissue and infection and if D were his patient, he would be sent straight to the hospital. I had up to this point, kind of smelled something off and on, but it didn't seem that bad to me. I don't know why. Maybe it was because I was around him all the time. Maybe it was because I was always covered in baby poop and spit-up. But that night, he came over and the smell practically knocked me off my ass. It made me gag. I told him about the pediatrician and we talked about the treatment he was receiving. He said that the nurses were taking care of it. I thought that they weren't being aggressive enough or weren't paying enough attention to it. I thought he needed to get referred to a wound care or infectious disease doctor. He agreed and told me that he would talk to the nurses about scheduling an appointment.
Two weeks went by and nothing happened. I asked him and he said that he hadn't done it or had a bunch of excuses like that their was a several week back log to see the doctor. I was still going over there and he was still coming over. He did not seem sick. He was in a good mood and energetic and eating well. Then he came over one night and my dad was here. After he left, my dad just started in on me and said D couldn't come over anymore. Apparently, my dad saw big, bloody stains on D's bandage that were leaking on the floor. He said he couldn't stand the smell and the blood on his floor. I did not see the blood or drainage, but I knew that this was getting way out of hand.
This was a Tuesday and I went over to D's right after my dad was done yelling at me. I confronted him and asked him what the deal was. He still didn't completely fess up to me, but he said that he knew that he needed to do something. I told him to just not come over anymore until he had a handle on this. And that this was to be his top priority. He promised to call the main head nurse the next day and get something rolling with a doctor. Wednesday went by and he spent the day running errands and I heard nothing. On Thursday, he said he called the head nurse and she was coming over on Friday to come up with a better plan.
On Friday afternoon, he called me and said that the nurse was there, had looked at the wound, and had called 911. He was getting ready to go to the ER. He wanted me to come and take care of the cats. I went over there immediately and he had just left in the ambulance. The nurse was still there. I knew this nurse pretty well, and I could tell she was flabbergasted. We talked and we sort of triangulated our data. We found out what happened. It turned out that she had not known of any pressure wound problems since the leg scrape earlier in the year. No one had been out to take care of the foot wounds in months. She had only been there for her monthly scheduled visits and he told her there was no problems and that I was taking care of his basic foot care. I told her that he said that home health was taking care of his feet. I said I never touched the bandages because I thought home health was doing them. I hadn't seen his feet in months and neither had she. She described the wounds to me and they sounded astonishingly severe and large. The whole top of one of his feet was gone. She said the wounds were beyond repair and that he would probably have to have both amputated. She said we were looking at months in the hospital. She said he might die.
I felt like I had been hit in the stomach. I went home and cried. Even my dad felt sorry for me. He bought me some food that night. Later, when I went back to D's place, I found just a ton of over the counter wound care products and gross over the counter gauze bandages in the trash and hidden in drawers and everywhere. He had spent months trying to take care of the wounds himself. I couldn't believe it. It just defied logic.
I did ask myself for the first few days if I could have done something differently to prevent this. Did I not do enough to take care of him? Well, every day I went to his house or he came to mine I started by asking, "What do you need me to do?" I never refused or neglected to do anything that he asked of me. Did I push him too hard to help me with the kids? Well, except for the week I spent in the hospital and the first few days out of the hospital, D has rarely spent more than three hours at a shot with the kids. What did he do the other 21 hours of the day? All he needed to do was make a simple phone call and home health would have basically taken care of the rest. I also asked him several times, even while I was in the hospital, if he needed to go home, to rest, whatever. Was I too distracted by my new babies? Well, What the fuck? I gave birth to twins and lost my sight and had three surgeries in the time-span of three months. I was back to work by the time the kids were two months old. I'm supposed to be distracted by my babies, and he, who can't help me with a lot of their care, is at least supposed to do his part to take care of himself. Should I have pushed harder or earlier to make him take care of his foot? Well, it is hard to know what action to take when you are being given false information. Was I supposed to strip him down every day naked for a health inspection? Lots of other people saw his feet, saw the same things I did, and did absolutely nothing. At least I finally put my foot down. How long would it have gone on? Till he dropped dead? I really, really hate the role of being enforcer to a grown man. It is a stupid, waste of my time job.
So after a couple of weeks, it was clear to me that it wasn't my fault, nor his family's fault for constantly rescueing him to the point that he relied on being rescued, nor the nurses fault. It was his fault. A social worker at the hospital questioned me and D and home health and agreed. The poor home health nurses had to do a little investigation and file a report. It said...
"It likely took weeks or months for the wounds to get to this level of necrosis. Whether the home caregiver [that would be me] did or did not provide adequate care is not relevant to the fact that the client should have notified [home health] at the first sign of skin breakdown. He has received instruction and educational materials about his responsibilities for his skin and has been instructed to notify [home health] of any skin breakdown within three days. The client declined to do so until 7/28..."
They also recommended kicking him out of home health, but he managed to sweet talk his way back in later on and they still care for him to this day. D did admit to hospital staff, home health, and me that he had screwed up and that it was his fault. I have no idea if he ever discussed these issues with his family. He says that he didn't want to worry us and it got out of hand. He said he tried to handle it himself so no one had to deal with it. Well, we were already worried. But the brand of worrying where you think that everything that can be done is being done is a much easier burden than the kind of worry where you wonder if anyone is in the cockpit flying the plane.
D's problems this past year have all stemmed from that injury. One of his feet was amputated and they did grafts on the other foot. The current pressure sore on his ischial bone happened because they didn't have his wheelchair set up right after his weight shifted because of the amputation. Then he also got a less serious foot wound when he was in the nursing home earlier this year. So he has had to endure tough consequences for his mistake.
It took me a long time to forgive him. This whole line his parents used about how he was just so into the babies he neglected himself just doesn't wash with me. When you are thirty-one and you've taken on the responsibilities of children, you can't just be that irresponsible. So I have forgiven him in a sense, but that doesn't mean I am willing to get stuck in a cycle of this kind of irresponsibility. So lets just say he is on probation. If it wasn't for the kids, I think I would have left him oh, about immediately for what he did and what he put all of us through. But I am trying to look beyond my own anger and frustration and look at the whole structure of us as a family. We have a lot of strengths that are somewhat rare in other families. I'm hoping that we can use our strengths to our advantage to get through this.
The Role of a Caregiver
Many of the readers who have written to me about this issue have expressed confusion and frustration about their roles as caregivers for family members. It is really hard, isn't it? Where does your responsibility end and the disabled person's begin? I think the foot story brings some of this stuff into focus.
Could I have saved D's foot? Yes. Theoretically I probably could have. At the first sign of trouble, probably in early Spring, I could have just taken over and managed it from start to finish like I did in '02. It could have been just a few week thing and been over with. Then I could take over the next pressure sore and the next and the next and managed all of his equipment problems and all of his future pressure sores. We could have had "Bod check!" drills where I periodically spot checked his entire body. I could have devoted my life to being his valiant companion who martyred herself so he could live to inspire me while I took care of his every need. Yes, I could have given up my whole life, my children, my career, my whole identity and spent my entire existence on earth caring for all of D's little problems.
It is not that far fetched. There are women out there (I say women because they are mostly all women) who marry disabled people or otherwise have a disabled person in the family who devote their entire lives to taking care of that person's every need. I know of a woman in Denver who has done this. She supports her husband's career by giving up her own. She pushes her husband's wheelchair in marathons. She lives and breathes by talking up her amazing disabled husband. She lies to care for him so he can inspire her with his bravery and perseverence. Ironically, she didn't prevent her husband from having a massive pressure sore, because that is how we met them. They are a nice couple, but who she is is completely drowned out by the fact that she is a wife of a quadriplegic.
It is what is expected of family members. Dana Reeve was touted as giving up everything to nurse her husband after his injury. (I actually don't think she gave up everything, but the media liked to present her that way.) Brooke Ellison had a movie made after her and showed her mother as the heroic woman who gave up everything so her daughter could go to college. I see a story constantly about a father who has given everything for his son and shows it mainly by hauling his disabled son along on triathalons. When D's family says that they wished he would have found a nice nurse or physical therapist for him to marry, this is what they were hoping for. A woman who would devote her life to managing and caring for D. This is what is expected of you if you are the less disabled in a partnership. You are supposed to feel sorry for and compensate for every little thing your partner can't do for himself. It makes you noble and heroic. Human interest stories are written about you and shown on the local news.
Okay, to each their own...but I think it is bullshit. I think it is not good for anyone to give up your life for someone else in this way. Why? Because you are sacrificing a whole person unnecessarily. If I quit my life to only spend all my energy taking care of D, I could not give whatever I have to give to the world. I could not have taught all the kids I taught. I could not have had children. I could not have worked for a university that studied and promoted SELF DETERMINATION among the disabled. I could not be rendering all my opinions and life stories on this blog. Even if I blogged, they would be his life stories that I merely supported. I don't think that sacrificing everything so you can care for a disabled person is heroic. I think it is stupid. Sure, we might do it short term for a loved one, but after a period...you've got to give up the martyr heroic rescuer thing and find another way. You aren't doing the disabled person any favors either. By taking over and managing everything and basically being that person's whipping boy, you are taking away his potential and chance to forge his own identity as well. The responsibility that D's father had put on him (has much improved lately) in wanting to be there every second and devote his life to him was one of the heaviest emotional burdens I've ever seen someone grapple with. Imagine that you are responsible for someone's happiness and fulfillment because you need help. It is not a healthy thing.
Anyway, there are solutions. The number one rule about being disabled and getting your disability-related needs met is to spread the love around. Divide it up amongst as many people as manageable so that each can have a life of their own and you aren't their end all and be all. There is no need to get into a co-dependent diad where you simply just cancel each other out. I don't mean to say that this is anywhere near easy to do, but you need to get your skills up and your life set up so that you are as independant as possible. Then you need to spread out your help. Get family and paid people and volunteers. Each is important. Get a cadre of people and back-ups for those people so no one feels put out. And for those people who do help you, reciprocate, reciprocate, reciprocate in any way you can. Even if it is just a small thing. Pay them, trade favors, listen to them, give them a gift, thank them, let caring for you be just one facet of who they are, and let them go on with their life.
One reason it is so hard for people with disabilities to find help is because people are afraid of being pulled into some sort of needy web of caregiving that they will never escape from. It is next to impossible for many blind people to get rides, depending on their situation. You see your co-workers giving rides to each other when the car is in the shop, but when you have your hands full with some boxes or something, don't try to find a ride home. People think if they give you a ride once, they will have to start doing it every day. Even if you happily take public transport 99% of the time. They don't think anyone would ever want to do that, so they don't want to start giving you rides even occasionally. You'll be taking those boxes home in a cab. (The evil flipside of this is when people insist that you must not ever take public transportation and you have to find a ride. They may or may not offer you that ride, but you MUST find one. You are simply burdening them with the fact that you are doing something a different way. You are just dillusional if you desire to take public transportation because you value your independence. You are only being selfish and causing them worry. But I digress...) Disabled people need to learn to spread it around and non-disabled people need to know that they can do one little thing and it doesn't mean that they are now this person's full-time savior.
When you do have a prominent role in caregiving for someone, set boundaries. The easiest way to do this is to limit yourself to doing the actual thing the person can't do for themselves. D is not very mobile, so I do mobility related things for him. I don't manage his health or his life. I am not a mommy or a stepford wife. Sure, we can knock around ideas and such, but the ultimate decision and responsibility for acting on it is up to him. Now, this gets trickier when the person is cognitively impaired, but still possible. But that is for another post. In limiting to people with physical impairments or health issues, here are a few examples of what I'm talking about:
1. Say your husband is a diabetic and needs to eat better and you want to be supportive.
Your job: Buy and prepare healthy foods. If you have a sweet tooth, try to curb it on your own time.
Not your job: After you've cooked a healthy meal, your husband complains about it and wants you to cook something not so healthy. Or if he decides on his own to make himself a big pile of chocolate something, or go out and have some kind of fried crap, it is not your job to steal the car keys, lock the refrigerator, throw yourself on top of the car and refuse to let him go or worry and nag at him incessantly. That is his problem.
2. Say your friend has some circulation issues and needs to keep his feet up several times a day.
Your job: Let him have the couch and some pillows. Respect the time he needs to do this rather than pushing him to run, run, run all day.
Not your job: To nag, remind, pressure or otherwise manipulate to try to get him to do this if he doesn't do it. It isn't your responsibility, it is his.
A harder one:
3. Your friend who has a lung problem and is bed-ridden wants you to give him his lighter to light his cigarettes.
Your job: This is a judgment call. So your job is to find out where your boundaries lie. If the guy is two months away from dying of lung cancer, maybe it is useless to go all high and mighty on him, it doesn't matter anyway and the objective in that case is comfort measures only. If he is, say a quadriplegic with 60% lung capacity and who doesn't have the best manual dexterity and want to light cigarettes for no good reason in bed, Well, then that might be different. Your job is to decide what you are comfortable with, set your boundaries and explain them honestly. If it is a grey area and the person has other people in his cadre of help, he can have someone else do it.
Not your job: To do or not do something you find morally wrong and feel guilty about it later.
Get how this kind of works? I think people think that I am D's personal servant and I'm sorry, but that was never in the cards. I fully expect him to manage his health and his life on his own terms and we will negotiate it out on where I will help him out. I owe him nothing in that regard except to respect what he needs done and to give him honesty about what I can do and can't do.
I remember working in the same office with people from the sign language interpreter program at KU. Sign language interpreters follow a strict code of ethics about signing and interpreting as exact as possible what is being said without any editing on their part. This sounds like a no-brainer but sometimes this was really hard for them to do. They are interpreting for a crime suspect and the suspect is signing stuff that is just going to dig himself in a hole and the interpreter's urge is to edit a bit. Or they sign some horrible thing that they will regret in a divorce court proceeding. Or they sign an outright lie. Or the hearing person says something completely derogatory to them and they have to sign it to the person even though they know it will be hurtful. It is very hard to watch someone do something totally stupid when you know you could stop it but that is not your job. It is hard to know how much support is really supportive.
I've tried to extend the sign interpreters code into my work as a support person for other disabled people. I'm just the proxy of their hands, their feet, their ears or eyes (though not so much of that anymore!) I have a unique advantage of having experienced being the helper and helpee. I try to provide it as I would like to recieve it: with respect.
So that is the long, sorry story of D's foot and why I couldn't or didn't save it. I feel bad that he made such a mistake and had to suffer such deep consequences, but I do not feel regretful or guilty for my actions. My hope is that we will all grow from this and come out stronger in the end.
Oh, yeah...the Family Thing
Not like this isn't long enough, but I forgot to address readers concerns about family member blame. Woah! I have to be careful here. Not that I am the person to talk to about this in the slightest, but family blame with no reasonable, logical evidence sucks ass. What it usually is is that people don't understand the issues of the health problem, can't handle it and the fact that it is out of their control, and need to blame something they think they can control so they kind of create their own reality about it. It has nothing to do with you. I repeat: It has nothing to do with you. If at all possible, just let it go and move on. And if they can't let it go, step out, let them be the caregivers, and see how well they fare. And have fun watching.
I'll note here that my experience with family member blame with the foot thing is just an itty bitty line item in my long rap sheet of mortal sins against the Family D. I'm in Guatanamo, though. I've never heard the formal charges from the horses mouth, only rumors of rumors of charges as the chief justice simply chose to have my trial in a mock tribunal behind my back and with her own evidence and just convicted me and my one year olds of which crime I know not and then placed us in exile. All this just makes it easier to ignore them, move on, and step out so they can partake in the fun. (Really, if you can, rather than dealing with that crap, sometimes it is better to get yourself and your kids clean out of the country. The kids already have other nice old ladies to squeeze their cheeks and feed them hard candy.)
