ari-anderson
Forum Replies Created
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If my wheelchair repair company told my mom and I it would take 2-4 weeks to order something, we would demand a work around until then. They’ve tried to make us swallow the answer that we have to wait quite a few times in the past, but we just wouldn’t accept it.
There’s usually more than one way to fix a problem quickly, but in my experience, sometimes you have to demand that a wheelchair repair company get creative.
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My dad left when I was a kid, so he’s not involved in my care at all. Unfortunately, my mom has to help with my care a whole lot, and she shouldn’t have to at her age. Plus, she gets up at 4:30am every day to work at the hospital, so she is swamped.
The problem is, we don’t have enough nurses to cover the hours we’ve been given by Medicaid. Hopefully, that will change and we’ll find more nurses soon.
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My nursing agency has traditionally done all of the recruiting for most of my life. However, in recent years, the nursing shortage has gotten so bad that I haven’t had much choice but to help my agency look. I post ads online. In my latest column, I wrote about how I found 2 nurses 2 years ago myself, but unfortunately I haven’t been able to find anymore nurses myself since. https://smanewstoday.com/columns/reason-i-have-faith-that-new-nurses-will-join-my-care-staff/
My nursing agency has found a couple nurses for me since then, but at the rate that people come and go, my staff hasn’t grown much yet.
By the way, my nurses get paid by my agency whether I find them or not. My mom and I could never afford to pay them.
As far as whether or not my case has a high turnover rate, the answer to that is yes and no. After 37 years of home health care, I’ve had a few that have stayed for 10 years or more, some stay a couple years, and a whole lot of them never make it past the interview.
smanewstoday.com
The reason I have faith that new nurses will join my care staff –...
With his back against the wall, columnist Ari Anderson has faith that new nurses will join his care staff.
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People back out on me all the time. I interview sometimes several nurses a month. Over 90% of the time it’s the same story. They will tell me that the driving distance to my house is absolutely not too far. Then they call my nursing agency the next day, and say it is too far and won’t come back. Or they will tell me that my care is absolutely not too much work for them. Then the next day they call my agency and say it is too much work and won’t be back.
It’s very hurtful when nurses tell me one thing, and tell the agency something different. Sometimes I don’t know what’s wrong with some people. Hopefully it will get better soon, because I’ve had plenty of good nurses in the past, and still do.
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Sorry, don’t know if my second paragraph came out since I spaced too much. How I meant to end my last post was:
It’s very hurtful when nurses tell me one thing, and tell the agency something different. Sometimes I don’t know what’s wrong with some people. Hopefully it will get better soon, because I’ve had plenty of good nurses in the past, and still do.
I’m sorry you have to go through it too Deann and Alyssa.
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Sometimes to an outsider, sibling relationships can be hard to understand. It’s no different when a sibling has SMA. At times, when my sister and I were growing up, people sometimes thought that we were actually verbally fighting. In reality, we were just teasing each other in a lighthearted way. We both knew it wasn’t serious.
Despite the teasing, we loved each other very much, and still do. Whenever one of us got in trouble growing up, we were always there to stick up for the other. Even though my sister has a family of her own now, we still stick up for each other in life. We also still tease each other, and revert back to being 8 and 10 years old when we see each other!
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Susana, I loved how you put that! I had someone basically get in my way yesterday. He totally doesn’t know who he’s dealing with!
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Hi Micaela,
This is totally a common problem, and something I deal with frequently. Whenever my home care nurses start calling a lot out and my mom has to cover their shifts, along with working full time at the hospital, she understandably gets exhausted. She also gets very frustrated with them. This in turn makes me frustrated to see my mom worked to the bone so hard.
What I do is tell her I love her, and how much I appreciate everything she does for me. This at least makes my mom feel somewhat better. Then I feel somewhat better.
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DeAnn, yes, compared to everything I had been through, recovery from surgery was a piece of cake. I was well enough to be discharged from the hospital after just one night.
However, since I had a rebound of my respiratory infection after the surgery it took me about a week to ween off the ventilator at home. Now I’m back to just needing my ventilator at night, which has always been my baseline.
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Alyssa, I’m feeling great both respiratory and kidney wise now! Thanks for asking:)
I’m glad that what I said helped you. I love it whenever people say what I need to hear. It makes a huge difference.
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Alyssa, I feel you. I was basically feeling the same way two weeks ago when I had my surgery and the weeks leading up to it. I was in so much pain from kidney stones along with a bad respiratory infection. My nurses at home had to work so hard to get my lungs clear enough so that I could actually go to the hospital and have my kidney stones surgically removed.
I felt like I was almost losing my humanity. Then I kept being reminded by how much people love and care for me out there. The outpouring of people who told me they were praying for me and asked how I was doing was amazing!
It showed me that all the people that mattered saw me as a person and not a patient. The only person that was seeing myself as a patient was myself. Once I saw this, I changed pretty quickly. Hope that helps.
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I share your frustrations DeAnn. I too have a nurse who makes it so obvious that she would rather be doing something else other than nursing.
The good thing is that starting Jan. 1st, my state is raising the pay for Private Duty Nurses (PDN) by over $5. Hundreds of people, including myself, had to fight tooth and nail to get this raise.
Hopefully it will help entice PDN nurses in my state to stay longer.
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I fullhearted agree with you DeAnn that this is a halfhearted attempt to appease people. Maybe even quarterhearted. What good is a charging station if you want to take apart my chair if I try to board a plane. If you take it apart, the technology that controls my chair is so custom made just for me, that you’ll never get it back together right again.
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Deann, how did you manage to get vaccinated? It’s ridiculous that in my state I’m in group 4 when I have a trach and vent.
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Also, if you’re into Sci Fi, Alien Worlds is a really interesting 4-part documentary on Netflix. It’s new.
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Hi Alyssa,
The Crown on Netflix is pretty good, although the 4th season is kind of depressing. The first two seasons of the show are very well done though. The third season is alright.
I’ve heard a lot of people say that The Queen’s Gambit on Netflix is excellent. I haven’t watched it yet, but probably plan to start this weekend.
Sorry for the January Blues! I experience it every year as well.
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I wouldn’t know about non-medical caregivers, the ones who aren’t nurses, but if you are trying to find nurses (RNs and LPNs), its never been this bad. I’ve received nurses in my home for 34 years and I’ve certainly seen home care go through ups and downs over the years, but not like this. Before Covid, I would maybe have to interview 10 or 11 nurses before I found a good one. Now I have to interview more than double that. This is because all the good ones either don’t want to go into the community at all because of the virus, or they don’t want to see any new clients and bring back germs to their regular patients.
I’m not trying to scare anyone, but that’s how low the nursing supply is in home care right now. What I’ve done to try and deal with it is go from one nursing agency to two. Then I went from two to three. If each agency can give you one or two good nurses sometimes you can piece together a staff that way. In North Carolina the State Medicaid allows you to have as many agencies as you need at once. Hopefully it’s the same way in other states.
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That was a great column Alyssa! I can definitely relate to how bleak things can get when you get sick. I had the flu too. It was last year in 2019 and it basically took me at least 3 and a half months to recover.
As depressed as I have been in 2020, I have had one Silver Lining that makes me forget all the bad stuff when I think about. While so many people with or without SMA have been so incredibly sick with Covid and other respiratory issues, for some miracle I have been healthy! In fact, I have not been sick at all since January 2020!
Probably most people with SMA realize that going 9 months without having any respiratory issues is quite an accomplishment, especially with a huge pandemic out there. That doesn’t mean I’ve been unscathed. I’ve had plenty of catastrophes in my personal life this year, but at least I have that thank God!
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Although I was never able to hold a book, I had these book holders in school that would attach to my chair. They would work fine for a while until they fell and broke, which seemed to happen a lot for various reasons. I was in school more than a decade ago so there are probably better book holders now.
There are plenty of bad things about the year 2020, but one of the great things is that we live in the age of audiobooks! There are few novels out there that haven’t been recorded into audiobooks, believe me I should know after all the time I spend on audible!????
For people in school using textbooks, no doubt there are ways to get them converted into audiobooks as well in this day in age. Has anybody here done that?
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Hi Kevin,
I see you’re a prolific writer and work for Bioware. Do you mind if I send you a private message on here soon about how to get a job writing? Never had much luck getting an actual paying job, which is pretty discouraging.
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Hi Alyssa!,
I definitely won’t be a stranger around here. Chatting with people gets my mind off things, LOL.
I think we crossed paths before online before, a few years ago when I was writing an article. It’s nice to meet you again!
So you have PDN too? How have the quality of the nurses been for you? Can I ask you a couple questions about that topic later?
Hope you’re having a good day!
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Hi Kevin!,
That was a well balanced and realistic write-up you did on 2020. Like you and everybody else, I had to cancel all my plans and trips that I was dearly looking forward to. I think people with SMA enjoy our trips more than the average person because we don’t take it for granted.
Also, when it rains it pours. On top of everything going on in the world, I’ve known plenty of people including myself who have experienced great personal hardships in their private lives this year. However, I’ve learned that through faith we can always find light in the darkness. We can either focus on the positives or negatives. One day we can go back to our lives even though it will be a while like you said.
On another note, I’m a comic book lover too and very interested to know how you got into the industry! Nothing like a well written plot combined with fantastic artwork! I also really liked the making of Frozen 2 documentary. Sometimes I like to watch the behind the scenes stuff more than the actual movies themselves.
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Hi Deann,
Did you ever find out anything more about if you were going to meet with your legislator? I’ve met with dozens and dozens of legislators over the past 20+ years, so I know a thing or two about it.
What everybody is saying here is totally correct, it’s important to paint a picture of your situation. If you can, you could give him a quick demonstration of the care you receive if the legislator is coming to your house. Or better yet, you or someone you know could make a 2-3min. video showing your care. The legislator could watch the video with you and then take it with him or her. You could say that you need caregivers to do the care you saw because your parents can’t do it all.
Besides learning about your situation, most legislators care about how cost effective would it be if you had more caregivers. Maybe talk about how your lack of caregivers is putting you at greater risk of being hospitalized or institutionalized. Home care is usually way less expensive than if you were institutionalized. If you get the exact cost figures of how much less expensive it is for you to receive caregivers in your home vs. going to institution it would make your argument really powerful.
It’s a sad fact, but most legislators really care about the bottom dollar. Let me know if you have any more questions. You never know when you might have to advocate.
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Rochelle, you have a really great idea. We should get together and brainstorm some time.
I mean this sincerely because I have a connection in DC. My goal is to testify before congress by 2025 about how Medicaid reimbursements are way too low in home care. I’ve literally gone through 1,000 nurses in my 37 years of home care. I probably wouldn’t have gone through so many nurses if the pay was better.
You’re idea of applying for grants and adding a stipend on top of Medicaid reimbursements could be one of the proposals I bring up when I testify. Again, let’s talk about it more if you want to.😀
If anybody has any other ideas I can use please let me know. This is a problem that basically affects all of us here.