It sounds so simple, doesn't it? Make a doctor's appointment, confirm, show up, see physician, return home. Cut & dried. Nothing to see here people, move along.
Unless, of course, you happen to be handicapped or the wife of a handicapped patient. The last appointment that was scheduled was on 5/15. It had to be cancelled for transportation issues. I re-scheduled that appointment for 5/27 at 11:15am. I called to make a transportation reservation on the day that I re-scheduled the appointment, which was 5/15. The Medicaid transportation dispatch company requires a 5 day advance notice to schedule the ride.
12 days should be more than enough, right?
Don't make me laugh! I thought we would be set as far as transportation was concerned. I juggled things around so that I could be off the morning of the 27th in order to go with John to his appointment. It's the first time his primary care physician (PCP) has seen him since his hospitalization/rehab stay. Lots of things to talk about. Lots of questions. I wanted the doc to see the ulcer on his left heel. I believe it's infected but I'm no physician.
Wednesday, May 27, 2009 0730. I get up trying to be positive. The previous evening I was told the transportation company called and said they had not been able to find my husband transportation for his appointment. WHAT? They've had 12 days I rant to my daughter, who
was the unfortunate soul that delivered that news. I couldn't believe it. I called them and was told, "that's correct, Mrs. Frxxxxxx, we haven't been able to find him transportation." How, I asked the idiot, I mean person on the other end of the phone line, can you not find him transportation in 12 days? If you can't find him a ride with 12 days notice how in the world can you do it in 5? "I don't know" is the answer I get! "We're still looking though." Ooooookkkkkaaaaaayyyyy. Like you're going to be able to find a ride with less than 24 hours to go.
I tried to be positive like I said before. But things were not looking good. I called the transportation company at 0800 to see if anything had developed overnight. "No, we're still looking. We'll call you when we find someone." Yeah...ok...right. I start to immediately search for alternative ways to get him there. I won't allow him to miss this appointment. His foot needs to be looked at. I ran into brick walls at every turn. It's $159/day to rent a handicapped accessible van. I've yet to apply for the Handi ride that's a part of the public transportation system here, so that's out. I desperately search the Internet for anything that can help. Nothing. My husband's aide comes in and says, "why don't you just take the regular bus?". HUH? I say. He can't get on a regular bus. She proceeds to tell me that all of the buses are wheelchair accessible. I say. WOW, I had no idea. Immediately we go to the website for the local bus provider. We "attempt" to read the schedule. I didn't not know that a master's degree was needed for trying to read a friggen bus schedule. Apparently, there is. Needless to say, we chose the wrong bus. Got off at the transfer station and walked to this doctor's office from there. That's about a 2 mile walk. We reach the office at 12:30pm. Notice that's an hour and 15 minutes after his appointment time. We walked because the nice, little bus driver told us we could get there quicker by transferring to another bus (the #2 she said). She told us this after she told us that we should have taken the bus that stopped on the other side of the street from where we were. I had just about had it by then. I paid $8.50 for all day passes for both us, the bus took us about 3 blocks to the transfer station.
The doctor did see us. He spent a total of about 5-10 minutes with us. Lucky us! He closes early on Wednesdays. We barely made it! Whew! He didn't look at his foot nor did he listen to his chest. He did call his name and John looked up at him like he was crazy. Gave me a prescription for a broad spectrum antibiotic because "his foot is probably infected". He determined this because I said it looked "gross and had an odor". He also told me to tell the home health people to call him while she was here on the following Friday and to culture the wound. We made a return appointment for 6/29 and off we went. I ate lunch at the little cafe' in the building and then we headed out. We walked home, correction, I walked, my husband rode in his electric wheelchair. The distance was 2.6 miles. The chair almost ran out of juice. We ended up in some places that I didn't know existed in this city. Why you ask? Because not all of the sidewalks in this city have ramps for wheelchairs, so at times we were forced to double back and walk on the road.
I didn't plan to take the whole day off but I couldn't go into work after that fiasco. We got back home around 3:00pm. My feet, legs, back and arms were hurting. My husband was sleeping. I drank copious amounts of water and collapsed on the sofa.
I phoned the transportation company the next day to inquire about what really happened with my husband's transportation. It was explained that they had booked him a ride and that company cancelled the day before the appointment. They are allowed to cancel up to 24 hours prior to the appointment. That explains why the transportation company didn't call until Tuesday. The supervisor advised me that I should always schedule him as a stretcher transport because there's a whole new set of rules for stretcher transports. So stretcher it is. Vive la stretcher!
Just another day in the life of a caretaker and their charge.
Saturday, May 30, 2009
Sunday, May 24, 2009
Memorial Day Weekend
The weather is holding it's own here in good Ol' Virginny. Temps around 80 with just enough sun to keep you outside. One moment of a brief shower has been the only bump in this holiday road.
I decided, after listening to the weather reports, to do my Memorial Day cookout today, Sunday. I couldn't do it on Saturday because that's my husband's dialysis day plus I needed desparately to clean our bathroom. Saturday's weather was the best thus far of the weekend but what could I do?
I also decided that I would make some homemade ice cream with the freshly picked strawberries that I purchased from the "strawberry lady" who comes to my place of employment and pushes strawberries for dollars. She picks them herself and she does a good job with picking the best ones in the fields no doubt. I did this particular chore on Saturday. It's a good thing that I did or no ice cream would have been made. It turned out pretty good even if I do say so myself.
I got in touch with a lady who was selling a geriatric chair that I could use for my husband. She sold it to me for 40 bucks! This will make his days more comfortable than that tired old wheelchair he's been sitting in since he got home. I borrowed a co-worker's truck and motored over to her house to pick it up. My daughter went with me to help in case the chair was heavier than I anticipated. It wasn't. This, of course, set me back on my schedule on how things were going to go down today. These plans I make seem somehow to never fall in to place like I envision them.
The food didn't get onto the grill until 6:00pm. I was starving and so was my husband. But he didn't eat very much. We had hot dogs, hamburgers, baked beans, potato salad, and chips. My neighbor came over and ate a hot dog and some of his friends came over as well. I had put up my Redskins canopy that was a gift last year from my sister and mom! I love it!
He had 2 visitors this weekend that he hadn't seen or heard from since his days in the hospital. His brother, James and one of his sisters, Eunice. I was glad to see them and they were glad to see him. Interesting conversations. So his weekend went relatively well with 1 exception.
I got him back into the house and was putting him back into bed and noticed that the "sling" that I use to lift him out of the chair and into the bed was a bit too high to support him just right. I thought I could pull it off anyway. So I called my daughter in to give me a hand with keeping him from pitching forward. It worked except for when I gave him that last little pump to clear his feet off of the lift. Before we knew what happened, he was on the floor! My daughter and I both tried with everything in us to keep him from hitting the floor but nothing could stop it. He wasn't that high off of the ground and his feet kinda cushioned him in a way. Thank God we have carpeting on our bedroom floor. He didn't hit that hard nor did he hit his head on anything. We repositioned the "sling" under him while he was lying on the floor and lifted him from the floor and got him onto the bed. I apologized profusely to him. It scared him to death but I'm pretty sure my daughter and I were more scared than he. He actually said he forgave me and knows that I didn't do it on purpose. That made me feel better. Next time I'll know not to do that when I know that the "sling" isn't positioned correctly no matter what. I felt so bad! At least he didn't get seriously hurt. Thank God for that.
So with that my weekend is done. That was enough excitement for one day and hopefully he'll trust me enough to allow me to get him up tomorrow!
Wednesday, May 20, 2009
Be Careful What You Ask For...
You just might get it!
I started back to work on this past Monday, May 18th. I thought that this somehow was a milestone. That life as I know it would return to being "normal" (whatever that might be). Boy was I ever wrong!
I stepped back into that daily grind without missing a beat hardly. Folks were glad to see me back. They were thrilled to see me back earlier than anyone had anticipated. I was glad to be back. It seems that I did more work during that week and a half that I stayed home to care for my husband than I have in the past 18 years of employment. I guess it all depends on the "type" of work that you're doing. Somehow, though, I missed being at home. I couldn't believe I felt this way! I have never wanted to be a stay at home person. Getting out and being with other people has always been my saving grace. This time though, things seemed different.
I found myself thinking of my husband and wondering if the aide was doing what was best for him. No one can take care of your loved one like you can (yeah..that's right..lol). I actually told a few of my co-workers that if that agency would pay me what I'm making at this job, I'd stay home and take care of him. I had never felt like that before! NEVER!
Prior to this bout of illness, I clamored to get out of the house at any cost. Didn't matter what the occassion. I didn't want to stay home. Something in the air had changed. Perhaps it was something in my heart. I'm not sure. It's a strange feeling. Maybe I know what's coming and I want to spend every waking moment with him while I can. I feel like he's stuck in between life and death. It's a struggle to watch him fade. It seems a little piece of him disappears each day. Some days are good, some not so good. At least we still have each other. I tell him that I love him everyday. He usually answers that with a grunt. My heart breaks with each moment he seems to miss. He sleeps alot. And when he's awake, he doesn't communicate much. It's amazing that he's this quiet. He's never been this quiet.
I miss him.
I started back to work on this past Monday, May 18th. I thought that this somehow was a milestone. That life as I know it would return to being "normal" (whatever that might be). Boy was I ever wrong!
I stepped back into that daily grind without missing a beat hardly. Folks were glad to see me back. They were thrilled to see me back earlier than anyone had anticipated. I was glad to be back. It seems that I did more work during that week and a half that I stayed home to care for my husband than I have in the past 18 years of employment. I guess it all depends on the "type" of work that you're doing. Somehow, though, I missed being at home. I couldn't believe I felt this way! I have never wanted to be a stay at home person. Getting out and being with other people has always been my saving grace. This time though, things seemed different.
I found myself thinking of my husband and wondering if the aide was doing what was best for him. No one can take care of your loved one like you can (yeah..that's right..lol). I actually told a few of my co-workers that if that agency would pay me what I'm making at this job, I'd stay home and take care of him. I had never felt like that before! NEVER!
Prior to this bout of illness, I clamored to get out of the house at any cost. Didn't matter what the occassion. I didn't want to stay home. Something in the air had changed. Perhaps it was something in my heart. I'm not sure. It's a strange feeling. Maybe I know what's coming and I want to spend every waking moment with him while I can. I feel like he's stuck in between life and death. It's a struggle to watch him fade. It seems a little piece of him disappears each day. Some days are good, some not so good. At least we still have each other. I tell him that I love him everyday. He usually answers that with a grunt. My heart breaks with each moment he seems to miss. He sleeps alot. And when he's awake, he doesn't communicate much. It's amazing that he's this quiet. He's never been this quiet.
I miss him.
Friday, May 15, 2009
Just When You Think
All is right again, something changes. Just as I was relieved that help had finally arrived, I faced yet another bureaucratic, red tape circle jerk. It just never seems to end. Once you're approved for public assistance, you spend a great amount of time justifying that you require it and an equal amount of time frustrated because you have it.
My husband qualified for Medicaid in 2003 when he was first admitted into a rehab facility. Usually once you qualify for help, you don't lose it. So that help has continued throughout his illness. It's been a blessing for the most part. Every now and then however, you wish you had other alternatives.
Medicaid pays for a great deal of services that aren't covered under Medicare or private insurance. It pays for his personal care aide, some of his durable medical equipment (DME) and for his 3 times per week transportation to dialysis. Because he can no longer transfer from his wheelchair to a private vehicle (POV), whenever I need to get him somewhere, like a doctor's appointment for example, I have to use a transportation company. We don't own a vehicle that can transport a wheelchair and we can't afford to buy one. The transportation company is dispatched through a local company called Logisticare, INC. I assume that Logisticare is a state run agency that coordinates all of the Medicaid transports for the state of VA. They are the folks that I call if I have a complaint about his transportation or to request a new transportation company and to schedule any "extra" pickups outside of his tri-weekly trips to dialysis.
I called Logisticare on this past Wednesday, May 13th because I had scheduled my husband's first follow up appointment with his primary care physician since his hospitalization for today, May 15th. I was told 48 hours should be plenty of notice for them to find him a ride. When I dialed the number, I heard on the automatic answering device, that they required 5 days advance notice for pickups outside of standing order pickups. 5 DAYS!! I navigated through the menu and got to a real, live human being and told him what I needed and that I had no idea there was a 5 day notice. He told me since this was something relatively new for them and I didn't know he would schedule him for the pickup but from now on to please observe the 5 day notice. No problem, I said.
When I got home from the short amount of workday that I put in on Thursday, there was a message on my answering machine from Logisticare. The red flags and bells sounded the alarm in my mind immediately. I phoned them and was told they weren't sure why they called me. No one had left a note in the computer explaining anything. The person I spoke to said that "in her opinion, they probably hadn't been able to find him a wheelchair provider yet" and that I should call them first thing in the morning.
Friday morning....Logisticare called me at 0900. Informed me that they had not been able to find him a wheelchair provider and they would continue to try and wanted to know if he could go on a stretcher. Certainly, I said. The young lady told me that if I hadn't heard from them by 1:30pm to call them to inquire of our status. His appointment was for 2:00pm.
1:15pm...Nothing from Logisticare yet. I phoned them at that time. They had found no one that could take him, wheelchair or stretcher, but they would continue to look. I informed them that his appointment was for 2pm. They said, "we know". I never heard from them again.
Needless to say I had to cancel his appointment because of no availability of transportation. I rescheduled for May 27th and immediately scheduled a pickup time for him with Logisticare for that day.
How can a company's only job be to find transportation for Medicaid recipients and they fail to do it? I don't understand. That's like KFC running out of chicken (oh wait..that did happen).
The circus continues and the ride never ends.
My husband qualified for Medicaid in 2003 when he was first admitted into a rehab facility. Usually once you qualify for help, you don't lose it. So that help has continued throughout his illness. It's been a blessing for the most part. Every now and then however, you wish you had other alternatives.
Medicaid pays for a great deal of services that aren't covered under Medicare or private insurance. It pays for his personal care aide, some of his durable medical equipment (DME) and for his 3 times per week transportation to dialysis. Because he can no longer transfer from his wheelchair to a private vehicle (POV), whenever I need to get him somewhere, like a doctor's appointment for example, I have to use a transportation company. We don't own a vehicle that can transport a wheelchair and we can't afford to buy one. The transportation company is dispatched through a local company called Logisticare, INC. I assume that Logisticare is a state run agency that coordinates all of the Medicaid transports for the state of VA. They are the folks that I call if I have a complaint about his transportation or to request a new transportation company and to schedule any "extra" pickups outside of his tri-weekly trips to dialysis.
I called Logisticare on this past Wednesday, May 13th because I had scheduled my husband's first follow up appointment with his primary care physician since his hospitalization for today, May 15th. I was told 48 hours should be plenty of notice for them to find him a ride. When I dialed the number, I heard on the automatic answering device, that they required 5 days advance notice for pickups outside of standing order pickups. 5 DAYS!! I navigated through the menu and got to a real, live human being and told him what I needed and that I had no idea there was a 5 day notice. He told me since this was something relatively new for them and I didn't know he would schedule him for the pickup but from now on to please observe the 5 day notice. No problem, I said.
When I got home from the short amount of workday that I put in on Thursday, there was a message on my answering machine from Logisticare. The red flags and bells sounded the alarm in my mind immediately. I phoned them and was told they weren't sure why they called me. No one had left a note in the computer explaining anything. The person I spoke to said that "in her opinion, they probably hadn't been able to find him a wheelchair provider yet" and that I should call them first thing in the morning.
Friday morning....Logisticare called me at 0900. Informed me that they had not been able to find him a wheelchair provider and they would continue to try and wanted to know if he could go on a stretcher. Certainly, I said. The young lady told me that if I hadn't heard from them by 1:30pm to call them to inquire of our status. His appointment was for 2:00pm.
1:15pm...Nothing from Logisticare yet. I phoned them at that time. They had found no one that could take him, wheelchair or stretcher, but they would continue to look. I informed them that his appointment was for 2pm. They said, "we know". I never heard from them again.
Needless to say I had to cancel his appointment because of no availability of transportation. I rescheduled for May 27th and immediately scheduled a pickup time for him with Logisticare for that day.
How can a company's only job be to find transportation for Medicaid recipients and they fail to do it? I don't understand. That's like KFC running out of chicken (oh wait..that did happen).
The circus continues and the ride never ends.
Thursday, May 14, 2009
The Calvary Has Arrived..
And not a moment too soon if you ask me. My husband's caretaker started yesterday! I was so happy. Finally, I don't have to struggle to do everything. Only small things like, starting the tube feeding, giving his evening insulin dose and checking his evening glucose levels. What a difference! I feel better already! The hoops jumping is pretty much over at this point.
It was an experience that I hope no one has to deal with again.
She has experience taking care of total care patients. She's been with the company for about 6 years. She feels comfortable using all of the medical equipment that he has and seems to have a good grasp of what she's supposed to do. She was available because her last patient just passed away not long ago. She seems very responsible and he seems to like her.
I told her my expectations and I think she's relieved to learn I'm not a stickler for perfection but that I do expect his needs to be met. I think it will work out. She'll be coming in on Mondays, Wednesdays, and Fridays at 8:30am to 6:30pm. On his dialysis days, she'll come at 8:30am and stay until he gets picked up and then she'll return between 3 & 3:30pm to 6:30pm. Perfect!
I'm so relieved that the burden has shifted a little for the better. My husband and I needed this time together. I needed it in order to accept the fact that he is where he is within his illness and he needed it in order to know I'm not going anywhere.
I'll return to full time work next week and our lives will continue as before with a few changes. He's less of a help than he used to be and he's pretty much totally dependent and I intend to render the best possible care that I can.
Physical therapy will start next week. What do I expect they asked? I'm not sure. I don't want to give up, but I want to be realistic at the same time. I don't think he'll ever get back to where he was prior to this recent illness. Anything will be a plus. I just pray that he'll get what the Lord intends.
Updates to follow.
It was an experience that I hope no one has to deal with again.
She has experience taking care of total care patients. She's been with the company for about 6 years. She feels comfortable using all of the medical equipment that he has and seems to have a good grasp of what she's supposed to do. She was available because her last patient just passed away not long ago. She seems very responsible and he seems to like her.
I told her my expectations and I think she's relieved to learn I'm not a stickler for perfection but that I do expect his needs to be met. I think it will work out. She'll be coming in on Mondays, Wednesdays, and Fridays at 8:30am to 6:30pm. On his dialysis days, she'll come at 8:30am and stay until he gets picked up and then she'll return between 3 & 3:30pm to 6:30pm. Perfect!
I'm so relieved that the burden has shifted a little for the better. My husband and I needed this time together. I needed it in order to accept the fact that he is where he is within his illness and he needed it in order to know I'm not going anywhere.
I'll return to full time work next week and our lives will continue as before with a few changes. He's less of a help than he used to be and he's pretty much totally dependent and I intend to render the best possible care that I can.
Physical therapy will start next week. What do I expect they asked? I'm not sure. I don't want to give up, but I want to be realistic at the same time. I don't think he'll ever get back to where he was prior to this recent illness. Anything will be a plus. I just pray that he'll get what the Lord intends.
Updates to follow.
Tuesday, May 12, 2009
Tuesday, May 12
Today was to be the day. The day where a home health aide or PCA (personal care aide)would show up and take over the duties of caretaker for my husband while I am at work.
I've written it here before and I'll write it again. The best laid plans of mice & men.
I received the call from the agency on Monday, May 11 asking me what hours I need for coverage (again). I told them that I work from 9am - 5:30pm Monday thru Friday. I also put a request in for an aide to come on Sundays because of my obligations to my church. "No problem" they say, just call us ahead of time and let us know what Sundays you'll need coverage. I said "okie dokie".
While speaking with the agency regarding the PCA's hours, I reminded them that my husband goes to the dialysis clinic on Tuesdays, Thursdays and Saturdays, from 10:30am - 2:30pm. He returns home between 3pm and 3:30pm. So we wouldn't need a caregiver during those particular hours on those days. I would need someone to come in on those days and see that he gets into the transportation van. That company won't pick up without someone being here at the house. (Side note: The transportation fiasco has finally gotten squared away as they showed up at the house today w/o a call to the dispatch office; however they were 15 minutes late). "No problem" they said (again).
So I'll let you guess what happened this morning before I left for work. I haven't gone back to work full time per se' because it's never that simple.
If you guessed that the PCA didn't show, you'd be 100% correct. She (I know it's a female because during that call yesterday, they gave me her name) was supposed to be here at 8:30am. 8:30am came & went. No aide. I didn't call the company because I have been given liberal time off while I get this taken care of. So I waited for the transportation folks to get here and take him to his appointed place, then I left for a few hours of work. I had made a deal w/my supervisor that until this is taken care of, I can come in on the dialysis days and work on some administrative things. So I did. It was nice to get back into the work environment but I hadn't missed it as much as I thought.
I got home and the transportation folks dropped my husband off and the gears started to grind once again. At about 4:30pm, the agency called to see how things were going. I told them that I hadn't seen anyone today as of yet but other than that, things were going well. Of course she was taken aback and couldn't for the life of her understand why no one was here. And then she asked me this question after inquiring about whether the aid was here or not: "Are you sure she's not there?" Had that not been the most absurd question that I'd been asked since this whole thing started, I perhaps would have let it go. But I couldn't. I just said to her. "Well, let me check the bathrooms and kitchen". "Nope, she's not here and pretty sure she hasn't been here today." "Ok" the agency spokesperson said. She told me she was going to "make some calls" and see what was going on. I told her I was ok for today but perhaps someone could start tomorrow. I have decided that I'm taking the rest of this week off because apparently this was much harder than I ever thought it could be.
I have yet to hear "what was going on." I won't be surprised when, tomorrow, once again, no one will show up.
It seems that each day brings an issue. No one can fix it and I just laugh at the ridiculousness of it all.
If an aid gets here before I retire from work. I'll be sure to post it and hopefully she'll have an answer as to why she couldn't get here when she was supposed to.
I've written it here before and I'll write it again. The best laid plans of mice & men.
I received the call from the agency on Monday, May 11 asking me what hours I need for coverage (again). I told them that I work from 9am - 5:30pm Monday thru Friday. I also put a request in for an aide to come on Sundays because of my obligations to my church. "No problem" they say, just call us ahead of time and let us know what Sundays you'll need coverage. I said "okie dokie".
While speaking with the agency regarding the PCA's hours, I reminded them that my husband goes to the dialysis clinic on Tuesdays, Thursdays and Saturdays, from 10:30am - 2:30pm. He returns home between 3pm and 3:30pm. So we wouldn't need a caregiver during those particular hours on those days. I would need someone to come in on those days and see that he gets into the transportation van. That company won't pick up without someone being here at the house. (Side note: The transportation fiasco has finally gotten squared away as they showed up at the house today w/o a call to the dispatch office; however they were 15 minutes late). "No problem" they said (again).
So I'll let you guess what happened this morning before I left for work. I haven't gone back to work full time per se' because it's never that simple.
If you guessed that the PCA didn't show, you'd be 100% correct. She (I know it's a female because during that call yesterday, they gave me her name) was supposed to be here at 8:30am. 8:30am came & went. No aide. I didn't call the company because I have been given liberal time off while I get this taken care of. So I waited for the transportation folks to get here and take him to his appointed place, then I left for a few hours of work. I had made a deal w/my supervisor that until this is taken care of, I can come in on the dialysis days and work on some administrative things. So I did. It was nice to get back into the work environment but I hadn't missed it as much as I thought.
I got home and the transportation folks dropped my husband off and the gears started to grind once again. At about 4:30pm, the agency called to see how things were going. I told them that I hadn't seen anyone today as of yet but other than that, things were going well. Of course she was taken aback and couldn't for the life of her understand why no one was here. And then she asked me this question after inquiring about whether the aid was here or not: "Are you sure she's not there?" Had that not been the most absurd question that I'd been asked since this whole thing started, I perhaps would have let it go. But I couldn't. I just said to her. "Well, let me check the bathrooms and kitchen". "Nope, she's not here and pretty sure she hasn't been here today." "Ok" the agency spokesperson said. She told me she was going to "make some calls" and see what was going on. I told her I was ok for today but perhaps someone could start tomorrow. I have decided that I'm taking the rest of this week off because apparently this was much harder than I ever thought it could be.
I have yet to hear "what was going on." I won't be surprised when, tomorrow, once again, no one will show up.
It seems that each day brings an issue. No one can fix it and I just laugh at the ridiculousness of it all.
If an aid gets here before I retire from work. I'll be sure to post it and hopefully she'll have an answer as to why she couldn't get here when she was supposed to.
Saturday, May 9, 2009
There's Always Something...
that needs attention when you're taking care of someone. If it's not the bandage changes, the diaper changes, the meals, the paperwork, the insurance squabbles, ect. then it's the transportation issues.
Medicaid pays for my husband's 3 trips to dialysis per week. It's a great service and for the most part it works well. But when a change occurs, there's glitches galore!
A week and a half before he was discharged from the nursing facility, I met with the "powers that be" in the dialysis center where he gets "cleaned" to discuss his care plan. I told them at that time he'd be coming home on 4/30/2009. After picking their tongues up off of the floor, they all said, "no problem, we'll help anyway we can, just call us." GREAT!
Another issue that I assumed was handled properly. I'm finding out that's not the case. He's being picked up on the proper days but they're arriving at least an hour late. These centers are on strict time restrictions because of the sheer volume of patients each one treats. A few minutes here and there really throws a wrench into their carefully timed schedules. I've called the company that coordinates his ride each time since he's come home. I called initially the day before his first home pickup to ensure things were in order. Yes, I was told. They knew he was at home and that wouldn't be a problem. The following day they were almost 2 hours late. My daughter called to ask why(I had to work that day so I wasn't at home). She was told the van went to the nursing facility to pick him up not knowing he was at home.
To make a long story short, I've called each time on his dialysis days since and they STILL don't have it right. I was told to have the social worker at the dialysis center to fax over the "new" standing order with our home address on it. I called her last Thursday, May 7th and asked her to please fax the new order for transportation. "Yes..I'll get right on that". Ummm..no she didn't. I had to call them again this morning when they didn't show. The transportation company had the address right, the dispatch service didn't. Can't cut the dispatch out, Medicaid will only pay if we use them. GREAT!
I love this big circle jerk that I've become a part of.
Medicaid pays for my husband's 3 trips to dialysis per week. It's a great service and for the most part it works well. But when a change occurs, there's glitches galore!
A week and a half before he was discharged from the nursing facility, I met with the "powers that be" in the dialysis center where he gets "cleaned" to discuss his care plan. I told them at that time he'd be coming home on 4/30/2009. After picking their tongues up off of the floor, they all said, "no problem, we'll help anyway we can, just call us." GREAT!
Another issue that I assumed was handled properly. I'm finding out that's not the case. He's being picked up on the proper days but they're arriving at least an hour late. These centers are on strict time restrictions because of the sheer volume of patients each one treats. A few minutes here and there really throws a wrench into their carefully timed schedules. I've called the company that coordinates his ride each time since he's come home. I called initially the day before his first home pickup to ensure things were in order. Yes, I was told. They knew he was at home and that wouldn't be a problem. The following day they were almost 2 hours late. My daughter called to ask why(I had to work that day so I wasn't at home). She was told the van went to the nursing facility to pick him up not knowing he was at home.
To make a long story short, I've called each time on his dialysis days since and they STILL don't have it right. I was told to have the social worker at the dialysis center to fax over the "new" standing order with our home address on it. I called her last Thursday, May 7th and asked her to please fax the new order for transportation. "Yes..I'll get right on that". Ummm..no she didn't. I had to call them again this morning when they didn't show. The transportation company had the address right, the dispatch service didn't. Can't cut the dispatch out, Medicaid will only pay if we use them. GREAT!
I love this big circle jerk that I've become a part of.
Friday, May 8, 2009
The Beat Goes On..
As you can see, I've not posted anything new lately. That's mainly because there's not much new to tell. The unending quest to get some help in here before I do some serious damage to my 40+ y/o back is just that; unending. However, things are not always as they appear. I was visited by a Department of Health "Angel" on Wednesday. She did the elusive "Medicaid screening", which will enable the help to get here at some point. He(the hubby) met the criteria, which I had no doubt that he would. So that's one more step toward my quest.
How did I get that done so quickly you ask? I call it....divine intervention. Sometimes prayers are answered, in just the way we need and when we need them. It is true that I asked that my husband be put on "the list" to be screened and he was on the bottom of that "pile". My angel pulled his packet from the bottom, called me to set up an appointment because of another angel intervening on my behalf, and told me that because me waiting for the usual month to get this done COULD cause problems with my employer, she had the authority to "prioritize" due to extenuating circumstances. When she asked if my waiting would cause an "issue" with my employer, I started to ramble about how I had gone from here to there and back and what was going on. She interrupted me with the following statement: "Mrs. Freeman, I don't mean to be rude, but I have to cut across your story and tell you this; I have the authority to bump someone's place in the line as I see fit IF there are extenuating circumstances, so just tell me there is an issue with your employer and we can get on with it." I said, "OK..there is an issue with my employer if I have to take off for a month." She said, "good, I'm on the way and should be there in about a half hour to conduct the screening." WOW. God showed up and showed out and so far so good. The cavalry should be arriving on this coming Tuesday, May 10th.
THE WORK
I do less work at my actual job than I have done here at home over the last week. This type of care taking is hard work and takes a toll on a not-as-young-as-you-used-to-be body. There's a lot of pulling and tugging and moving and washing and cleaning involved. Much more than I care to do on a daily basis. It seems from the time I wake up until I put him to bed for the night, I'm busy doing something. Whether it be changing a depends or changed his clothes or linens or getting him up into his wheelchair, it's always something. I feel that I've done nothing but do laundry since he got home. Between "bathroom accidents", eating mishaps, and emesis(a nice medical term for tossing your cookies), I've changed his bed at least a thousand times(ok so it's not a thousand but it's got to be close to that either way). I have gotten faster at the bed baths and diaper changes. This morning I did a complete bed bath with 2 (yes 2 because it's inevitable when you get a clean diaper on, everyone, infant or adult, must mess it up immediately), got him dressed and up into his wheelchair in 1.5 hours. Not bad for someone who has only been doing this again for a week.
My biggest frustrations come with meals. I've tried so hard to NOT feed him baby food. I just feel wrong about it in every way. So I've fought it with everything in me but he's not eating the "adult" food well. His swallowing just isn't up to par and I'm afraid he's losing too much weight even with the overnight tube feedings and I don't want the folks at dialysis to think I can't take care of him and do something I don't even want to think of. I broke today and fed him the Gerber's 3rd foods line. I think it was harder for me than it was for him. I didn't let him see the jar, I heated it in the microwave in a separate container. Amazingly, he ate all of it along with a container of Gerber's Sweet Potatoes. The issue has been that he will "pocket"(this means hold food in the space between the cheek and gums)the food and continue to chew it intermittently. The obvious danger in that is he could get choked and it can also cause "thrush" which can be painful. No "pocketing" with pureed or baby foods. So I've resigned myself that this is the new reality for him and I must do what's best for him regardless of how much I hate it or know that he would hate it if he were more aware of what's going on. He made the usual faces but continued eating it without question. Now I could puree' his meals using the same foods that I am consuming and I will do that from time to time but in this world of "microwave mentalities" and in the interest of time when I return to work, I will probably resort to Gerber's more often than not.
ACCEPTANCE
Often times when you're dealing with a loved one whose in failing health, you may struggle to hold on to the "old" them. I find myself doing this more often than not. It's hard to accept that the person you love is no longer that person. I have fought to hold onto the man that I married. Denial is a strong thing. It clouds your vision and keeps you from making the right decisions.
I have moved to another level of acceptance in this quest to give my husband the dignity he deserves. He's not the man he once was. He may never be that man again in this lifetime and I must accept it, like it or not. It's a future that none of us want to think is reserved for us. But taking care of someone who is in this circumstance, really makes you realize that none of us are promised good health throughout our lifetimes. It also makes you ask that unimaginable question; "who will take care of me if the need arises?" Often times, it's not the person you would think. My husband thought that his siblings would come to his rescue back when he first became ill. I wasn't doing what he wanted nor was I doing what he thought was right and he thought he could call one of his siblings and they would swoop in and carry him off into the wild, blue yonder. He quickly found out that was not the case. He was stuck with me. We argued. We butted heads. We ran into brick walls, known as stubbornness, at every turn. I cried. I laughed to keep from crying. He cried but he didn't laugh. The laughter was gone for him. There was nothing funny about growing old or getting sick. Although I didn't sign up for this, I knew I couldn't walk away. That's what he expected. That's what he would have done. I couldn't be him. No way! Not after preaching to him about how ridiculous it was for him to walk out on his first wife because she was doing what he was doing. It was my job to restore his faith in women, I thought. Have I? I certainly have shown him what it's like to love and do the right thing in the face of adversity. Would he have done the same? Probably not. But in all fairness, he's not wired the same. I've done what I thought to be right. That's all that I can do.
Each step is a movement toward what's necessary to let him go. Little by little, piece by piece, I will reach the peak of acceptance. That's when I will be able to let him go. The man I married is long gone. He doesn't exist anymore. He "died" in 2003 after he collapsed at work that fateful night. The man that emerged was not even close to the man, that just 2 months prior, had said "I do" in front of our families and friends. He fought to keep his independence. It was a monumental struggle. This time, there's no fight left in the tiger. He's accepted his illness for what it is; chronic and unforgiving. I, on the other hand, continue to fight to keep him. Not quite ready to let him go. I just buried a child 4 years ago. How do you bury another loved one so soon? I wasn't ready. I'm selfish. Even though I knew when I started dating him back in 1984 that he wouldn't be around to watch me turn old and gray, I wanted him to be. I have gotten grayer over the years, so I guess that part has come to fruition. But there will probably be no holding hands in matching rocking chairs on the porch for us.
Each day is a day of acceptance. That's why God gave us this time together. He's preparing me for what's to come. He's giving us time to make it right. I'm glad that I can recognize it for what it is. There was a time when I couldn't have done that. Losing a child puts a lot of things into perspective I suppose. Perhaps this time will allow me to let go with a sense of fulfillment and know that he knows I loved him beyond what he could ever imagine. I tell him each day, usually in the morning when he's more alert, that I love him. He still says it back to me for now. I hope he realizes that there are good people in this world and he married one. I hope I have restored his faith in women and given him a gift that not everyone can afford. LOVE. Unconditional and determined. Full of hope but moving toward taking what I can get. I relish the "lucid" moments. The recognition that's still there at times. The love that comes through those baby browns at times. Sometimes he looks at me with a look of "I can't believe what you're doing here". Like he never thought I'd stay and see him through. Like he's trying to figure out what makes someone do the things I've done thus far. He'll never understand. He's not wired like that.
How did I get that done so quickly you ask? I call it....divine intervention. Sometimes prayers are answered, in just the way we need and when we need them. It is true that I asked that my husband be put on "the list" to be screened and he was on the bottom of that "pile". My angel pulled his packet from the bottom, called me to set up an appointment because of another angel intervening on my behalf, and told me that because me waiting for the usual month to get this done COULD cause problems with my employer, she had the authority to "prioritize" due to extenuating circumstances. When she asked if my waiting would cause an "issue" with my employer, I started to ramble about how I had gone from here to there and back and what was going on. She interrupted me with the following statement: "Mrs. Freeman, I don't mean to be rude, but I have to cut across your story and tell you this; I have the authority to bump someone's place in the line as I see fit IF there are extenuating circumstances, so just tell me there is an issue with your employer and we can get on with it." I said, "OK..there is an issue with my employer if I have to take off for a month." She said, "good, I'm on the way and should be there in about a half hour to conduct the screening." WOW. God showed up and showed out and so far so good. The cavalry should be arriving on this coming Tuesday, May 10th.
THE WORK
I do less work at my actual job than I have done here at home over the last week. This type of care taking is hard work and takes a toll on a not-as-young-as-you-used-to-be body. There's a lot of pulling and tugging and moving and washing and cleaning involved. Much more than I care to do on a daily basis. It seems from the time I wake up until I put him to bed for the night, I'm busy doing something. Whether it be changing a depends or changed his clothes or linens or getting him up into his wheelchair, it's always something. I feel that I've done nothing but do laundry since he got home. Between "bathroom accidents", eating mishaps, and emesis(a nice medical term for tossing your cookies), I've changed his bed at least a thousand times(ok so it's not a thousand but it's got to be close to that either way). I have gotten faster at the bed baths and diaper changes. This morning I did a complete bed bath with 2 (yes 2 because it's inevitable when you get a clean diaper on, everyone, infant or adult, must mess it up immediately), got him dressed and up into his wheelchair in 1.5 hours. Not bad for someone who has only been doing this again for a week.
My biggest frustrations come with meals. I've tried so hard to NOT feed him baby food. I just feel wrong about it in every way. So I've fought it with everything in me but he's not eating the "adult" food well. His swallowing just isn't up to par and I'm afraid he's losing too much weight even with the overnight tube feedings and I don't want the folks at dialysis to think I can't take care of him and do something I don't even want to think of. I broke today and fed him the Gerber's 3rd foods line. I think it was harder for me than it was for him. I didn't let him see the jar, I heated it in the microwave in a separate container. Amazingly, he ate all of it along with a container of Gerber's Sweet Potatoes. The issue has been that he will "pocket"(this means hold food in the space between the cheek and gums)the food and continue to chew it intermittently. The obvious danger in that is he could get choked and it can also cause "thrush" which can be painful. No "pocketing" with pureed or baby foods. So I've resigned myself that this is the new reality for him and I must do what's best for him regardless of how much I hate it or know that he would hate it if he were more aware of what's going on. He made the usual faces but continued eating it without question. Now I could puree' his meals using the same foods that I am consuming and I will do that from time to time but in this world of "microwave mentalities" and in the interest of time when I return to work, I will probably resort to Gerber's more often than not.
ACCEPTANCE
Often times when you're dealing with a loved one whose in failing health, you may struggle to hold on to the "old" them. I find myself doing this more often than not. It's hard to accept that the person you love is no longer that person. I have fought to hold onto the man that I married. Denial is a strong thing. It clouds your vision and keeps you from making the right decisions.
I have moved to another level of acceptance in this quest to give my husband the dignity he deserves. He's not the man he once was. He may never be that man again in this lifetime and I must accept it, like it or not. It's a future that none of us want to think is reserved for us. But taking care of someone who is in this circumstance, really makes you realize that none of us are promised good health throughout our lifetimes. It also makes you ask that unimaginable question; "who will take care of me if the need arises?" Often times, it's not the person you would think. My husband thought that his siblings would come to his rescue back when he first became ill. I wasn't doing what he wanted nor was I doing what he thought was right and he thought he could call one of his siblings and they would swoop in and carry him off into the wild, blue yonder. He quickly found out that was not the case. He was stuck with me. We argued. We butted heads. We ran into brick walls, known as stubbornness, at every turn. I cried. I laughed to keep from crying. He cried but he didn't laugh. The laughter was gone for him. There was nothing funny about growing old or getting sick. Although I didn't sign up for this, I knew I couldn't walk away. That's what he expected. That's what he would have done. I couldn't be him. No way! Not after preaching to him about how ridiculous it was for him to walk out on his first wife because she was doing what he was doing. It was my job to restore his faith in women, I thought. Have I? I certainly have shown him what it's like to love and do the right thing in the face of adversity. Would he have done the same? Probably not. But in all fairness, he's not wired the same. I've done what I thought to be right. That's all that I can do.
Each step is a movement toward what's necessary to let him go. Little by little, piece by piece, I will reach the peak of acceptance. That's when I will be able to let him go. The man I married is long gone. He doesn't exist anymore. He "died" in 2003 after he collapsed at work that fateful night. The man that emerged was not even close to the man, that just 2 months prior, had said "I do" in front of our families and friends. He fought to keep his independence. It was a monumental struggle. This time, there's no fight left in the tiger. He's accepted his illness for what it is; chronic and unforgiving. I, on the other hand, continue to fight to keep him. Not quite ready to let him go. I just buried a child 4 years ago. How do you bury another loved one so soon? I wasn't ready. I'm selfish. Even though I knew when I started dating him back in 1984 that he wouldn't be around to watch me turn old and gray, I wanted him to be. I have gotten grayer over the years, so I guess that part has come to fruition. But there will probably be no holding hands in matching rocking chairs on the porch for us.
Each day is a day of acceptance. That's why God gave us this time together. He's preparing me for what's to come. He's giving us time to make it right. I'm glad that I can recognize it for what it is. There was a time when I couldn't have done that. Losing a child puts a lot of things into perspective I suppose. Perhaps this time will allow me to let go with a sense of fulfillment and know that he knows I loved him beyond what he could ever imagine. I tell him each day, usually in the morning when he's more alert, that I love him. He still says it back to me for now. I hope he realizes that there are good people in this world and he married one. I hope I have restored his faith in women and given him a gift that not everyone can afford. LOVE. Unconditional and determined. Full of hope but moving toward taking what I can get. I relish the "lucid" moments. The recognition that's still there at times. The love that comes through those baby browns at times. Sometimes he looks at me with a look of "I can't believe what you're doing here". Like he never thought I'd stay and see him through. Like he's trying to figure out what makes someone do the things I've done thus far. He'll never understand. He's not wired like that.
Monday, May 4, 2009
The Merry-Go-Round Continues...
Yes, that's right. It's day 5 of my husband's return home after a long illness and things still aren't in place for home health to come in and help with his care. I'm stuck with having to take yet another day off of work on Tuesday, May 5th and perhaps will need May 6th as well.
I called the home health agency this morning at around 9:15 to inquire about the status of our case with them. I spoke with the RN that had come out to do the assessment to see if there had been any new developments regarding his care. She tells me that they still haven't gotten in touch with the nursing facility about some sort of paperwork error than came from the doctor. The case worker with home health called me a little while later and explained what the issue is. Apparently when my husband was discharged from their facility, the physician discharged him to a nursing facility!!! Unbelievable! How can you discharge a patient to the same status as he was prior to discharge? So you think it's ok to discharge a patient to nursing home care when you clearly know that he's going home? Why on earth is this an issue? The case worker explains further and says that the little section on the paper that's for Medicaid patients was marked with the category 1 designation which means he was discharged to a nursing facility and that Medicaid won't pay for home health if a patient is discharged to a nursing facility. This keeps Medicaid from having to pay multiple caretakers at a time. In other words, it keeps these folks honest. It ensures that a nursing facility won't continue to draw payments on a patient that's been discharged to home and vice versa. However, it has become the bane of my puny existance.
I've been trying since Friday afternoon to find out why home health isn't coming in to help. I wasn't told very much on Friday except not to expect anyone to help until Tuesday at the earliest. I was taken by surprise because I gave both entities a 1.5 - 2 week heads up of the discharge date. I felt that was sufficient. And it should have been. But as we all know the best laid plans of mice & men...etc.
I started my quest again this morning at 9:15am with a call to the RN who had come to assess my husband's medical needs. She didn't have an answer but I told her that I needed to know what was going on. She informed the home health case worker that I had called so the home health case worker called me. She was the one to inform me of this teeny, tiny mistake. All she needed, she assured me, was to get someone to change that Medicaid "status" from a 1 to a 4 and they could get someone out here. She informed me that she had been trying and then ever so sneakily dropped these words in the conversation. "Mrs. Freeman, that's why I told you to call us as soon as you had a discharge date for Mr. Freeman." I said, "excuse me but I did call 1.5 weeks prior to his discharge to give you the date and left a message with the person who answered the phone because you were not there at the time and I was assured that you would get the message and get things going." I tried phoning the nursing facility and getting things worked out over the phone. I got bounced around from person to person to person.
I called the home health case worker and informed her of my bad luck. She suggested that I go to the nursing facility and do a "face to face" with the folks out there. So that's what I did. I spoke with 3 people there and thought (silly me)that things were taken care of when I left the facility. If you know Murphy's Law, you know it wasn't taken care of.
I called the nursing home social worker again and she then called the home health case manager and they came to the conclusion that neither one of them should change the code on the form and that my husband would have to undergo another Medicaid screening to determine his level of care therefore enabling the home health agency to take over his care. This could take up to a month! A MONTH? "You're kidding, right?" That's what I heard myself telling the social worker. And then I heard her say, "no Mrs. Freeman". My heart sank as I realized that perhaps this wasn't meant to be and that I had just doomed myself to putting him back into a nursing facility after trying hard to do what I had promised him those years ago. I couldn't bring myself to do that.
I called it quits for another day w/o help from the agency and laid down to sleep thinking, "OMG..what have I done?"
I called the home health agency this morning at around 9:15 to inquire about the status of our case with them. I spoke with the RN that had come out to do the assessment to see if there had been any new developments regarding his care. She tells me that they still haven't gotten in touch with the nursing facility about some sort of paperwork error than came from the doctor. The case worker with home health called me a little while later and explained what the issue is. Apparently when my husband was discharged from their facility, the physician discharged him to a nursing facility!!! Unbelievable! How can you discharge a patient to the same status as he was prior to discharge? So you think it's ok to discharge a patient to nursing home care when you clearly know that he's going home? Why on earth is this an issue? The case worker explains further and says that the little section on the paper that's for Medicaid patients was marked with the category 1 designation which means he was discharged to a nursing facility and that Medicaid won't pay for home health if a patient is discharged to a nursing facility. This keeps Medicaid from having to pay multiple caretakers at a time. In other words, it keeps these folks honest. It ensures that a nursing facility won't continue to draw payments on a patient that's been discharged to home and vice versa. However, it has become the bane of my puny existance.
I've been trying since Friday afternoon to find out why home health isn't coming in to help. I wasn't told very much on Friday except not to expect anyone to help until Tuesday at the earliest. I was taken by surprise because I gave both entities a 1.5 - 2 week heads up of the discharge date. I felt that was sufficient. And it should have been. But as we all know the best laid plans of mice & men...etc.
I started my quest again this morning at 9:15am with a call to the RN who had come to assess my husband's medical needs. She didn't have an answer but I told her that I needed to know what was going on. She informed the home health case worker that I had called so the home health case worker called me. She was the one to inform me of this teeny, tiny mistake. All she needed, she assured me, was to get someone to change that Medicaid "status" from a 1 to a 4 and they could get someone out here. She informed me that she had been trying and then ever so sneakily dropped these words in the conversation. "Mrs. Freeman, that's why I told you to call us as soon as you had a discharge date for Mr. Freeman." I said, "excuse me but I did call 1.5 weeks prior to his discharge to give you the date and left a message with the person who answered the phone because you were not there at the time and I was assured that you would get the message and get things going." I tried phoning the nursing facility and getting things worked out over the phone. I got bounced around from person to person to person.
I called the home health case worker and informed her of my bad luck. She suggested that I go to the nursing facility and do a "face to face" with the folks out there. So that's what I did. I spoke with 3 people there and thought (silly me)that things were taken care of when I left the facility. If you know Murphy's Law, you know it wasn't taken care of.
I called the nursing home social worker again and she then called the home health case manager and they came to the conclusion that neither one of them should change the code on the form and that my husband would have to undergo another Medicaid screening to determine his level of care therefore enabling the home health agency to take over his care. This could take up to a month! A MONTH? "You're kidding, right?" That's what I heard myself telling the social worker. And then I heard her say, "no Mrs. Freeman". My heart sank as I realized that perhaps this wasn't meant to be and that I had just doomed myself to putting him back into a nursing facility after trying hard to do what I had promised him those years ago. I couldn't bring myself to do that.
I called it quits for another day w/o help from the agency and laid down to sleep thinking, "OMG..what have I done?"
Sunday, May 3, 2009
The Beat Goes On...
3 days are in the books. Day 2 wasn't too exciting. He was picked up for dialysis about an hour late. The transportation company swore on their mother's graves that they had "no idea he had been discharged from the nursing facility". So even after a call to the dispatch service that Medicaid uses to ensure the word had gotten to those people about his discharge, they had no idea. The dispatch person assured me when I called on Friday that they knew he was going to be picked up from home. I was at work so the daughter was left to deal with "those people".
After attending a boring class for work, I stopped by the local WalMart to pick up some things for my daughter and to also get some strips for his glucometer. My daughter texts me to tell me the medical equipment person in at the house to set up the tube feeding equipment and demonstrate how to use it. I rushed home so as not to keep this dude from his other appointed rounds. I, of course, already knew how to use this pump and really just went through the motions because that's his job and he gets paid to do that. We received 1 pump, 30 sets of tubing and bags, and 5 cases of Nephro supplemental liquid. He's to get 5 cans a night! Holy quacamole! He gets this thick, nasty looking stuff overnight through his "PEG" tube at 70cc/hr. Yikes! That's alot of liquid. It does a good job of maintaining his caloric intake and blood sugars. He's not eating by mouth very well.
Today has been a good day. He starts the day out alert and ready to meet the world. He quickly fades as the day goes on but at least he's trying. He ate a good portion of his breakfast and I was glad to see that after yesterday. I changed the dressings on his coccyx and both heels today. The wound on his coccyx doesn't look very bad although it is open and has some drainage. That's good because that promotes healing. The wounds on his left foot are generally small and are looking like they're on their way to healing nicely. The wound on his right heel, however, looks really gross(sorry..no other words to rightfully describe it). It's a big wound measuring approximately 6cm across. It's open and draining thick purulent drainage with a slight odor but no redness or swelling seen. He has an open wound on his right bunion area of the foot but that's not as big nor as nasty. Pressure sores or "bed sores" as they used to be called are very hard to manage once they've become as big as one of his has become. Diligence and dedication to doing the dressing changes really helps a great deal.
They have such cool things in the medical profession now that weren't available when I was doing patient care of this magnitude. I was told early on that there is an ointment you can put on pressure sores that will debride them for you now. I was amazed! I'm from the school of nursing that thought the only way to debride was to clean w/soap and water and scrub area with a soft brush or pick off the dead skin and tissue with "tweezers" and scissors. Those days, apparently, are gone forever. An ointment can do that now. The only stipulation is to not get the ointment on the healthy, pink tissue because it will eat that as well. I was flabbergasted when I learned this. But how neat and painless for the patient.
I got home from church at about 2:00pm and had decided that I was going to get him out of that bed today one way or another. I do have the patient lift so why not use it? After seeing the transportation people use the wheelchair to get him into the room yesterday, I started to think, why not? So I lifted him off of the bed, put him into his old "hand truck"(that's what he called it once upon a time), attached the leg attachments and rolled him into the living room with the rest of us. What did he do but fall asleep. I fed him dinner(beef BBQ, mashed potatoes, and potato salad). He ate about a third of that. I put him back to bed and hooked his tube feeding up. He's resting comfortably.
Tomorrow, hopefully, the calvary will arrive and I will get some help. If not tomorrow then Tuesday. I did have to take an extra day off because of their failure to act swiftly enough but you can never have too many days off IMO.
I'm tired but not broken or beaten. I've done well considering that I've not done this type of nursing for over 20 years. My back will certainly waste no time in reminding me that I'm not as young as I used to be.
LOL
After attending a boring class for work, I stopped by the local WalMart to pick up some things for my daughter and to also get some strips for his glucometer. My daughter texts me to tell me the medical equipment person in at the house to set up the tube feeding equipment and demonstrate how to use it. I rushed home so as not to keep this dude from his other appointed rounds. I, of course, already knew how to use this pump and really just went through the motions because that's his job and he gets paid to do that. We received 1 pump, 30 sets of tubing and bags, and 5 cases of Nephro supplemental liquid. He's to get 5 cans a night! Holy quacamole! He gets this thick, nasty looking stuff overnight through his "PEG" tube at 70cc/hr. Yikes! That's alot of liquid. It does a good job of maintaining his caloric intake and blood sugars. He's not eating by mouth very well.
Today has been a good day. He starts the day out alert and ready to meet the world. He quickly fades as the day goes on but at least he's trying. He ate a good portion of his breakfast and I was glad to see that after yesterday. I changed the dressings on his coccyx and both heels today. The wound on his coccyx doesn't look very bad although it is open and has some drainage. That's good because that promotes healing. The wounds on his left foot are generally small and are looking like they're on their way to healing nicely. The wound on his right heel, however, looks really gross(sorry..no other words to rightfully describe it). It's a big wound measuring approximately 6cm across. It's open and draining thick purulent drainage with a slight odor but no redness or swelling seen. He has an open wound on his right bunion area of the foot but that's not as big nor as nasty. Pressure sores or "bed sores" as they used to be called are very hard to manage once they've become as big as one of his has become. Diligence and dedication to doing the dressing changes really helps a great deal.
They have such cool things in the medical profession now that weren't available when I was doing patient care of this magnitude. I was told early on that there is an ointment you can put on pressure sores that will debride them for you now. I was amazed! I'm from the school of nursing that thought the only way to debride was to clean w/soap and water and scrub area with a soft brush or pick off the dead skin and tissue with "tweezers" and scissors. Those days, apparently, are gone forever. An ointment can do that now. The only stipulation is to not get the ointment on the healthy, pink tissue because it will eat that as well. I was flabbergasted when I learned this. But how neat and painless for the patient.
I got home from church at about 2:00pm and had decided that I was going to get him out of that bed today one way or another. I do have the patient lift so why not use it? After seeing the transportation people use the wheelchair to get him into the room yesterday, I started to think, why not? So I lifted him off of the bed, put him into his old "hand truck"(that's what he called it once upon a time), attached the leg attachments and rolled him into the living room with the rest of us. What did he do but fall asleep. I fed him dinner(beef BBQ, mashed potatoes, and potato salad). He ate about a third of that. I put him back to bed and hooked his tube feeding up. He's resting comfortably.
Tomorrow, hopefully, the calvary will arrive and I will get some help. If not tomorrow then Tuesday. I did have to take an extra day off because of their failure to act swiftly enough but you can never have too many days off IMO.
I'm tired but not broken or beaten. I've done well considering that I've not done this type of nursing for over 20 years. My back will certainly waste no time in reminding me that I'm not as young as I used to be.
LOL
Friday, May 1, 2009
Murphy's Law in Full Effect..
Yep. I knew there would be "glitches" when I decided to bring my husband home from the nursing facility that he had called home since 1/30/2009. These things just never work out the way they're supposed to. No smooth transition at all. Although I must say that getting the bed and the patient lift worked out a lot better than I thought. I used that lift this morning while doing his bed bath. I put him in the sling and lifted him off of the bed just enough where I could straighten the sheets and chux pads. AWESOME is all I have to say about that contraption.
The bed bath went really well but I quickly remembered why I didn't want to do that type of work all those years ago. While I enjoy taking care of people and helping them through their problems, I don't care for the hard work that comes along with taking care of a "total care" patient. My husband does try to "help" when he can. He grasped the bed rails when I need him to but I strongly suspect it's more of a way for him to feel secure about not falling than it is to help me. I was whipped after doing the AM care this morning and declared to my daughter; "they don't pay those folks who do this work enough". Although they make more than minimum wage most of the time, it's still not enough when it's total care.
Back to the Murphy's law sentiment that got this whole thing started. The home health agency has yet to send anyone over to the house to do his assessment. So I called them this morning at 8:30am to inquire about where they were. The nice young lady on the phone said, "I was just about to call you". I informed her that I was concerned because my husband didn't recieve his tube feeding last night because I didn't have anything to feed him the feeding with at the house. The home health lady then says, "well that's the nursing facilities responsibility to get those things in place prior to the patient being discharged." I didn't know that either! I thought the home health agency supplied all of that stuff. But no, she assures me, the nursing facility should have set him (my husband) up with a DME. A DME is a durable medical equipment company. So I told her that I got the bed and the lift, but I didn't get the pump, the tubing and bag, the supplement or anything remotely resembling something I can use to run a tube feeding overnight. GREAT! I thought. How is he supposed to maintain his blood sugars and weight if he's not getting the supplemental feedings? The home health lady is really peeved at this point and she agrees to call around and try to get the things in place.
She calls me about 2:00pm today and tells me she's hitting brick walls at every turn. So I kept the number to the home health equipment company so I offer to call the person I dealt with regarding the bed and lift. I paged her and she called right back. I informed her of my ignorance at how things work and then told her I wasn't able to give him a feed last night because there's no equipment. She's taken aback by this and says that the physician that wrote his discharge orders did not include the pump or bagging or supplement or anything to his orders to them. She can't believe it! So she offers to get the ball rolling and will hopefully have things turned around lickety split for us.
So whatever can go wrong has thus far with the exception of a few things. I guess I should be greatful that anything has worked out.
On to the next failed thing I guess.
The bed bath went really well but I quickly remembered why I didn't want to do that type of work all those years ago. While I enjoy taking care of people and helping them through their problems, I don't care for the hard work that comes along with taking care of a "total care" patient. My husband does try to "help" when he can. He grasped the bed rails when I need him to but I strongly suspect it's more of a way for him to feel secure about not falling than it is to help me. I was whipped after doing the AM care this morning and declared to my daughter; "they don't pay those folks who do this work enough". Although they make more than minimum wage most of the time, it's still not enough when it's total care.
Back to the Murphy's law sentiment that got this whole thing started. The home health agency has yet to send anyone over to the house to do his assessment. So I called them this morning at 8:30am to inquire about where they were. The nice young lady on the phone said, "I was just about to call you". I informed her that I was concerned because my husband didn't recieve his tube feeding last night because I didn't have anything to feed him the feeding with at the house. The home health lady then says, "well that's the nursing facilities responsibility to get those things in place prior to the patient being discharged." I didn't know that either! I thought the home health agency supplied all of that stuff. But no, she assures me, the nursing facility should have set him (my husband) up with a DME. A DME is a durable medical equipment company. So I told her that I got the bed and the lift, but I didn't get the pump, the tubing and bag, the supplement or anything remotely resembling something I can use to run a tube feeding overnight. GREAT! I thought. How is he supposed to maintain his blood sugars and weight if he's not getting the supplemental feedings? The home health lady is really peeved at this point and she agrees to call around and try to get the things in place.
She calls me about 2:00pm today and tells me she's hitting brick walls at every turn. So I kept the number to the home health equipment company so I offer to call the person I dealt with regarding the bed and lift. I paged her and she called right back. I informed her of my ignorance at how things work and then told her I wasn't able to give him a feed last night because there's no equipment. She's taken aback by this and says that the physician that wrote his discharge orders did not include the pump or bagging or supplement or anything to his orders to them. She can't believe it! So she offers to get the ball rolling and will hopefully have things turned around lickety split for us.
So whatever can go wrong has thus far with the exception of a few things. I guess I should be greatful that anything has worked out.
On to the next failed thing I guess.
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