home health training

[gooseberry]

Went to a womens wellness event Saturday and met the nurse in charge of a new home health group in my area. Asked if they were knowledgeable about ALS....oh, yes, she answers. So, playing devils advocate, I asked a few questions...here they are....

If the patients oxygen saturation levels are around 92 what would you do?. She said get oxgen for the patient

I asked her what riluzole was? She had never heard of it

Asked her proper care of a peg tube? Her response: What is that?

Asked if they knew how to use different lifts? Yes they were familiar with some models.

In th end, she gave me her card, said she was going to talk to clinic to see what kind of inservice could be provided for her staff. She said she had no idea they were not understanding patient need for this disease.

 

[dalvin]

I find that to be the case with a lot of home health agencies. The nurse assigned to my case was here a week or so ago, watched me use my hands to lift my leg up so I could cross them then says 'so, you still have use of your legs'. I said didn't you just watch me pick it up with my arms. Then I find out she's never put it in my charts that I have ALS, so the staff there had no idea what my needs are or what to expect for the future. My aide had to tell them. Sometimes think the aides are more professional than the nurses and know more too.
Hope your agency actually follows through

 

[gooseberry]

After the last fiasco, I really need to have something at the ready. I am hopeful. They said they would work to get at least two nurses trained for the diagnosis. They didnt realize there was a clinic and a VA clinic in town. Crazy!

 

[LaurieCALS]

I gotta chime in here. Most Drs, let alone the support staff, have never had a patient with ALS. We need to train everyone involved.

Some aid in a rehab hospital came into the room of my PALS and reclined him right after a PEG food feeding. I wasn't there, had stepped out, but the damage was done. Sucks. Just sucks.

 

[gooseberry]

You are right Laurie. It is what makes it so hard to take that much needed break for yourself. Other people are not as knowledgeable as the pals and cals but feel they know better since they have the degree.

 

[rosec]

A few years back I took my PALS to see the endocrinologist. While we were waiting in the waiting room, my PALS needed to pee so I asked the nurses and they let us in and use the restroom inside. My PALS was still walking with the aid of a cane, so I waited outside the door, just in case.
As I was waiting, I overheard one nurse talk to another about my husband (the clinic is part of the large UCx healthcare system, so all his records were online). Nurse 1 tells the nurse 2 that my husband has ALS. Nurse 2 asks, "how come he is here if he is on advanced life support?" You should have seen their faces when they realized I was standing within earshot!

 

[nebrhahe53]

Last time I went into the ER, the docs were going to get me O2. I told them no that's bad for PALS. Thankfully I could still talk.

 

[affected]

It's sad but it's true and as CALS and PALS too but often the CALS have to do most of it, that we have to educate the 'educated'.

I took it in stride early on, realising that most doctors, nurses, and home care workers have never come across ALS, and if they have it was probably years ago and it could have been a different onset.

Out of all our home care workers I had 1 who had looked after a PALS before, about 5 years earlier and he had been foot onset, not bulbar, so the differences were huge. When she started with us Chris would walk with assistance, but not talk, swallow, and had the frozen shoulders and almost no arm use.

I decided that it was not a burden, but an opportunity (actually yeah it was a burden, but IIWII ) to help educate so the next PALS they deal with might get better care.

In hospital with pneumonia they had an electric hoist on the ward, just one, so it was kept elsewhere, and we were given our own sling. I had to ring for a nurse, who then had to page a wardsman and we could wait half an hour or more. I was not allowed to use it. However, I had to be present when it was used because no one had any idea how to work with a PALS, and indeed they were grateful for my hovering and directions.

For anything in the home, make a plastic sleeve folder and include as much information as you can, step by step, photos if possible. Chris used to call it 'his manual'. I could update pages and replace them as things progressed.

It really helped the staff - information on what his issues were, and exactly how to do things. Oh I did video too like the hand massage one I put up so they could massage along whilst watching it.

It takes energy to do all this, but it was all worthwhile.

 

[gooseberry]

Good ideas Tillie. I will start one now. Things for Steve are progressing which is why I had the conversation with the home heaalth person. I really want to find someone before we have to have them but realistically I know I will be training them.

 

[dalvin]

All this just reinforces my opinion that most medical folks shouldn't be allowed out of their house without adequate adult supervision. Had a gp and a gastro doc a few years ago that said my bulbar issues, specifically when my larynx spasms, were impossible, exact words was that it can't happen. Made me a sceptic

 

[Santa joe]

Our nurses were very good and of course the aids were not allowed to touch the vent. I would explain to them what I was doing and what it was for. They seemed interested. One of the nurses asked if I would ever considered becoming a RT - I responded with a loud NO! Trained care for a pals is tough. A pals on a vent is even worse. Good for you to ask those questions.

Debbie

 

[affected]

At the end of the day, no one understand the needs of any PALS but the primary CALS, so don't ever be afraid to speak up, explain, educate and forbid anything when dealing with health 'professionals'.

Sometimes getting someone who admits they don't know much and training them is better than someone who knows a bit and thinks they understand it all ...

Sheesh Dalvin, if only they were right and bulbar issues were simply impossible!

 

[gooseberry]

The best nurse we have had so far in any situation had a brother with als. She always asked the best way to do soething for my pals before she did it. She was worth her weight in gold.

 

[Diane H]

Sometimes getting someone who admits they don't know much and training them is better than someone who knows a bit and thinks they understand it all ...

Tillie

That is absolutely true! Care givers from agencies have been trained by the wrong people. They get the version of care required fr unstable patients in a hospital setting, not the real life setting of a stable vent patient at home. They are so intimidated by the machine and the trach and the dire threats of what they could do wrong that they can't see that home care is easy. A chimpanzee could be trained to suction. The machine will beep if there is anything wrong. You can always take the patient off the vent and use the ambu bag to give breaths if there is a problem with the machine.

The big worry is a mucous plug. That will require saline squirts and repeated suctioning to break it up, and turning up the suction strength on the suction machine will pull it out. But mucous plugs are preventable by keeping the patient well hydrated.

Caring for a patient with a trach and vent is so much easier than caring for someone who can't cough effectively. They can die from a mucous plug or choking. A trach makes removing a plug or general congestion immediate and easy, not a half hour of terrified trying to cough it out. Choking is an exhausting bout of coughing and gagging, but through all of it the vent keeps you breathing. You can't choke to death with the trach keeping your airway open!