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catcaniac

Distinguished member
Joined
Dec 11, 2010
Messages
189
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
North Carolina
City
Sneads Ferry
Well, the great news is that I have nursing care for my husband 12 hours a day. The even better news is that I am going to start getting 24 hour care on August 1st because I am going back to work on August 17th. Most of you burned out caregivers would think that I would be well rested and excited. I am neither. Nurses, I have come to believe are nothing more than spoiled, stuck up, know it all's who really know not much of anything. Tonight, I wish that I did not have to go back to work and that I could go back to the physically exhausting days of caring for my husband all by my lonesome. Because, although I was physically exhausted, I wasn't so mentally exhausted or getting broke for that matter. My first company couldn't ever find nurses, so I might have one, or I might not, which was usually 4 days a week. So I changed companies. The new company always sends nurses. Great right? No, they come....they give me orders...they complain....they throw things away that I have purchased out of my own pocket. They call my husband's doctor almost every day over stupid things like more water or how much Tylenol to give (really, read the bottle you idiot) so he is just about sick of us and doesn't respond most of the time. Every time I try to lay down to get some rest, they come get me and say...."I can't figure out what he wants so he asked for you." There went the nap. They seriously ask me about things like fever and infection. Hmmmm? I have had a whole 6 mos. of OJT in nursing. They ask me things like, "How often should we change the trach?" "Do you think I should give him more water because he has a fever?" "Can you really handle a bowel movement with him with just one person?" They don't even notice things like his heart rate increasing and think to take his temperature. I have totally rearranged the entire room and spent many dollars to accommodate them because they complain. Tonight, the nurse explained to me that she couldn't see her paperwork well enough and said, that I needed to get her a chair and a lamp. So off I go to get the chair and a lamp. She goes over, gets in the chair, and says, "Oh, I thought it would be a comfortable chair. I don't know if I can sit in this one or not." Then, tonight, I went to get the prescription for the patch so I could post the name for someone on the forum, only to realize that she has cleaned up and thrown away the meds so I don't even have the RX number to reorder his patches. I liked taking care of my PALS all by myself because at least then people somewhat understood why I was tired and I knew that he was being cared for by someone who would respond to whatever his needs where. Now people just say, "Wow, you have lots of help." No, I have someone in my home at all hours with almost as many needs as my PALS. And then I feel sorry for my PALS because they don't cater to him or seem to respond to the little cues that he is struggling so I stay with him anyways. So if you think you want help, be careful what you wish for. I love my job and a small part of me is excited to go back to work. But I am very worried about my PALS emotional and physical well being when I will not be here to stay on top of things. I do not wish to be a control freak but when I come in and he is in distress with a darn RN right next to him eating her sunflower seeds, it just stresses me to the max.
 
Fire that nurse. And if they can't send a trained and understanding nurse, fire that company. Should be plenty of replacements around there.
 
Actually, I am talking about a number of nurses. I only have each nurse for about 2 days each week. And no there are not plenty of replacements around here, especially for someone on a ventilator. I have actually fired 3 nurses since we started and they were just completely incompetent or downright mean. The companies tell us that because a lot of the nurses around here are military wives, they don't really want to work. The companies set up interviews and the people don't even show for the interview or they show and accept the job and then don't show up for work. I only know of one other company around here who will take a patient on a vent. There is an ALS patient I know of that uses them and they have many of the same issues we have. The CALS for another PALS in the area ended up hiring some of her friends to take care of her husband and pays out of her own pocket because her nursing care was so bad. Must be a regional problem for us.
 
Always call the office of the agency you use and tell them the complaint that you have also ask them if you have the right number to call if you can't get this complaint settled. In Arkansas they give that number to you in the folder they leave. I think sometimes they feel like we are dummies and we are not, stand your ground we know what works. The girl I have coming in told me they were not here to change the way I do things but to keep things as normal as possible.
 
I'm going to print your first post, and show it to all of the incompetent hospice nurses, aides, etc...I don't think it's a regional problem. I have to explain, educate... you name it. Most don't know squat about ALS, and I guess they're not willing to spend their free time learning. It's much more demanding to care for a pALS than a cancer patient. Geez...just realized I am ranting instead of giving the support you were looking for...sorry. But really, keep going to the uppermost management as many times as it takes. They care more about keeping clients than those nurses do.

Also, it's totally understandable how you feel about leaving your husband under the care of others. I feel that way with my mom. I felt that way when my kids were young too. I felt that nobody would care for them like me. Sorry again...no words of wisdom. You will figure it all out. That's what us caregivers do--eventually.

Laura
 
That is absolutely awful. I am so sorry for you and your PALS for this unnecessary stress.

A lot of people in the medical field do not have compassion and need another profession... maybe prison guard. We have been asked if we want to start Hospice, but after some of the nurses we dealt during my father's passing, I am afraid of them. One nurse, when she heard my husband has ALS, point blank said that I would have to institutionalize my husband soon, because I would not be able to take care of him. What an idiot... she has no clue of our support system or accommodations in our home nor my strength and will to care for him til death do us part!

Good luck to you!
 
Having a staff that is supposed to be working for you can cause even more stress...and they are paid to be helping! I have had to fire 2 out of the 3 PCAs I've hired. Amazingly the one who completed nursing school(RN) was the most clueless, ignorant, ding dong! The other 2 both worked in nursing homes and were better. It is difficult to find reliable, competent staff that can also assimilate into the family. I don't have an agency doing the hiring but last time i picked the better of the 2 that applied and she was awful, I was borderline ready to knock her out.

Its about trying to find someone who actually cares about quality work. I don't expect them to be experts but I do expect them to pay attention and care about not ony my husband but there is a whole family here and respect us and our privacy.
 
The companies tell us that because a lot of the nurses around here are military wives, they don't really want to work.

That is absolutely the stupidest excuse I've ever heard for any company to use! They might as well have said, "a lot of the nurses around here are (insert any profession here) wives, they don't really want to work. What in the world does being in the military have to do with whether ones wants to work? That is just bogus!

We have the same problem here. I've only had an agency in once for a week. Two of them were dumb as dirt (and this was re: the PEG). One out and out lied to me about her responsibilities. I reported her and told the agency not to send her out again.

I think I would have snapped, had that been me, when the woman complained about the chair. They are supposed to be accommodating your husband, not you them. Maybe you should post a sign on the front door, sort of like a bill of rights for your husband (and yourself). You know, "Any professional healthcare worker that passes over this threshold must care for my husband's needs, with special attention to his efforts at communication. He must be treated with dignity at all times, etc... And, if you require something for your own comfort while caring for my husband, be sure to bring such with you. If you cannot comply with these rights, then turn your ass around and don't bother to cross that threshold."

Sorry, I wish I could really offer some good advice. Good luck to you and your husband! Hope you will continue to let us know how everything is going.

PS-

I told my husband about your situation and he suggested you invest in a videocam that is disguised as an ordinary object. You can get them cheap on A m a z o n. Some can feed to your computer at work!
 
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We also had nothing good to say about the couple of nurses that came to help in moms last couple of weeks. They didn't want to be there, were not gentle, and just were not friendly at all. We declined to use them even though they were "free" to us as insurance covered them.

We ended up with a private person who was a friend of the family that we paid out of pocket for she came a couple of hours a day a few times a week. She mostly did misc things around the house so I could give mom more attentive care. She did feed her occasionally (peg) and admin meds. Her profession was home health care but she was not incorporated not really insured and mostly got work through word of mouth through friends and friends of friends. She was a godsend to us even though it was just a few hours a week. She was loving and gentle, but she knew my mom I think that makes all the difference in the world.

Nobody can care for your loved one like you would and that's what's so frustrating. Add in all the complexities of ALS especially the inability to communicate what is really needed an you have one tough issue.

I wish I was independently wealthy and could just go help every single one of you!
 
One day I decided to just sit in the shower and not direct the person who I was paying to help me. Every single day for three weeks I had given precise directions... which is very tiring because my voice is deteriorating. I sat there under the water for a good five minutes while she just stood there outside the shower staring at me. Finally, I said -- as I had said every single day for three weeks, "I would like you to wash my hair first, every day. Would you mind putting shampoo onto my hair and rubbing it in?"

Why keep her? She is better than the person who screamed at me and threw things. I don't know what will happen when I cannot speak.
 
Wow. Our experience with hospice was 180 degrees from what you guys are describing. Both with my mom and with Glen. They were kind and helpful and went out of there way to make sure the family was doing ok as well as the patient. Even when in a coma, they talked to Mom, gave her gentle sponge baths and applied lotion to her skin to keep her comfortable. If there was a medication question, it was answered quickly after contact to the doctor. This is with two different hospice providers. I strongly urge those of you who have had a bad experience to research other companies, ask for references and check them out... the little bit of work it will take up front will be more than worth it in the long run.
 
Why keep her? She is better than the person who screamed at me and threw things. I don't know what will happen when I cannot speak.

I so agree. Why keep the nurses? Because we have had plenty of others that were much, much worse. I have no choice about returning to work and even if I don't really care for some of them, we have to stick with the ones who at least have a good idea of how to care for him at this point. It takes a great deal of time to train them and we would hate to start a bunch of new ones and me not be at home to monitor them.
 
I nearly mentioned hospice but realized I only get an hour of care most days--mine, which is the only hospice in our area--doesn't do even 8 hours of care. Cat's husband needs someone skilled around him (skilled, as in, taking time to learn Eric's needs) all of the time as I understand it.
 
Lobster... type up a list and protect it in plastic and tape it to the wall.

Bathing Instructions:
1. Wash and rinse my hair..
2. My favorite shampoo is:
3. blah blah blah

I do this with my family when they drive me crazy... I finally put up a sign with 2 large pieces of tape across a double doorway stating:

"STOP! BEFORE you even THINK about bringing ANYTHING into this room, you should ask yourself: "is it worth listening to Mom yell at me?" I THINK NOT."

It works for a little while :)
 
Hi Cathy I just wanted you to know that as a nurse and a widow of a husband who had ALS I was appalled by the so called care you got through the nursing agency. They seem to have forgotten that the first thing they can do for a patient ( and that includes the family) is CARE! Maybe they need reminding or a heart transplant. You are in my thoughts and prayers and I hope you find the one you can trust to look after your husband. Hugs you tight.
 
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