Visiting Nurse Association helping

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- Tom doesn't use the hospital bed because he cannot get in and off on his own. He likes his power lift recliner since it gives him some independence.
- Because different nurses come each time, I spend a lot of time explaining. I have noticed they don't really take sufficient notes. So each time they come, I explain. They also do not read about the case b4 they come. More explaining.
- The OT and PT often want to come on the same day. There is overlap in therapy so I say , no.
If there is a schedule, its a secret. I asked for the schedule and was told it is not given to clients.

- I do push/request but get tired of that because it stresses me out. The benefits are it is paid by aetna Medicare and they VNA offer less hours. I called 3 agencies private pay. They all have minimums. 5 hours per day 3 days week. One said 8 hours per day, 3 days. I am not going to pay someone to watch tv or read. And it will not be the same person each time. More explaining.
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I have one person through an agency and another I hired on my own. NJ I would expect to have good services. Has a social worker or the ALS clinic said that there is no program for help for people with ALS in NJ? Laurie has previously suggested looking for nursing students or other students studying in the health field. Maybe since you have a Medicare Advantage plan the home health aide's will come a little longer than with straight Medicare. The person I have in the evening 2x a week does a tube feeding for me and shaves my husband. The person I have 4 mornings a week (these are my peak months for care, I will have to cut back at some point) helps my husband to get up, wash up and feeds him. My husband can still still eat slowly if he is fed. It takes great patience which this caregiver has.
Mary2. Glad you have helpful help. I am still figuring out how things work.
VNA gave us a LCSW. I thought it was strange because she was only alloted one visit. We do have ALSA LCSW and I will call her to understand how the system works. But with the top agencies that are private pay - they have minimum hours per day and min days per week.
Rates are 30 to 35 per hour.
I will think about direct hire.
For people who have outside caregivers that are not consistent consider making a binder with step by step instructions and information about the routine. basic but detailed. Include pictures ( we even had pictures of prepared meals for portion size and consistency. Videos are helpful as well if you can send to their phone or maybe set up a private youtube channel. A binder is best so you can replace sections as routines change.
Oh I hear you on the explaining.
I used a plastic sleeve binder and Chris used to call it his 'manual'.
It even had a page that gave our mission statement on having people come to give care.

You could make a page that gives the basic run down and hand that to each new person on arrival and ask them to read it then ask questions. Make them a bit more responsible.

I totally hear you on how much work it puts on us.

You can also hire students and teach them how to do a lot of care. They are often keen to learn and work - nursing students, PT and OT students etc can be great candidates.

Again, create a manual, and mine had lots of photos eg this is his stovetop coffee maker in pieces to be cleaned and how to use it, here is how his hospital bed is set up when you make it up, here is how to set out the bathroom to do a shower. I went all out on photos as they saved me on explanations by text and were easier to replace when things changed.

Sadly however, too much is left to us, that's a reality. I even did how to videos - how to massage for example. I had them on his ipad and they could follow along.
Oh, and I always kept a sweets jar. This stood on top of his 'manual' and I also had a communications book. Anyone who came started by taking a sweet, and checking what had been written by previous staff or myself.
At the end of a shift or session, they could have another sweet while writing a brief report on anything that was of note from while they were here, for the next person to read.

These little things took lots of pressure off me.

After Chris died, I had contact from every single person who worked here telling me that they always felt so welcome, involved and enabled by having that moment to find out what was going on, how to do stuff, and to leave their own thoughts as they left. Apparently I was the only client any of them had that provided them with what they found were great tools to do their job well.

Sometimes it can help to try and imagine the day of some of these people who are racing from one person to the next and trying to remember all the little important things for each one. Pictures help it turns out - spark memory retrieval really well.
Grateful for all of you and your posts!
I have handouts for different providers explaining my current situation. I update them as needed. It's exhausting to explain and sometimes I wouldn't have remembered the things I need to tell providers.

I started with a complete list of meds and supplements. Then I did a handout for dentists about ALS patients (I know a PALS who was in a PWC and needed three extractions and other dental work. It was a nightmare for him because the dentist and his assistants didn't understand he would choke on water dripping into his throat.).

I got hurt during PT even though I explained my foot could not be strengthened. So I wrote a paper explaining ALS for PTs.

Slowly, thanks to my very slow progression, I'm writing more handouts and now some very specific for me. My pain management doctor is using Greg's (RIP) cannabis handout (abbreviated by me) to help his patients with ALS, epilepsy, and those with chronic pain increase their level of comfort.

Like Nikki said, having a binder with your PALS-specific information will help you. Do the most important things first, then add on as needed.

Your PALS is very fortunate to have you.
Hello my brother who was diagnosed with ALS the beginning of Dec. is having a peg tube place in a few weeks. He still is eating and can takes his meds ok. He has lost about 60 pounds in the last 8 months. Due to this weight loss the Dr suggested a peg tube to get in extra calories. I’m glad you mentioned the home health nurse visits. I will mention this to him. I think this will make him and his wife more comfortable with the process. Good to hear you are doing ok with his feedings.
Everyone, with ALS or not, should maintain an updated a one-page summary sheet of rx, medical history, and current complaints, and upload/bring it to all encounters with new clinicians. In ALS, this would include protecting the airway and joints, risks of supplemental O2/intubation/paralytics, use of BiPAP if applicable, etc. I have attached some material that may help.

To be clear, Mary, the only nursing students we used had been with us as pre-nursing students before entering nursing school (I wrote glowing recommendations to help them get in). Usually nursing school is too much of a time commitment for a job in daylight hours. But we typically had a pre-nursing student help out a couple of hours a weekday.

Handouts are certainly one way to go. I never got that organized, but our son and I were almost always on hand, just in another room. That way, we could get other things done while being available to help. Though I certainly didn't hire every student we interviewed, we found some who were willing and able to learn (who are now all excellent nurses), so they were pretty self-sufficient, once oriented, and we also had the senior ones train others when they joined the crew.


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Laurie, I don't know what my PALS and I would do without you and the others helping us. 🧡
Handouts take far less time to create and use than constantly explaining, teaching and reminding people you encounter.
I think it depends on what the helpers are doing and who else they're doing it with. Our students were doing passive range of motion, feeding (not a tube), dressing, helping with transfers, and such. We demonstrated the exercises and checked them out on them, did transfers with them, etc. Plus they and Larry shared each other's stories, music, and, secondarily, movies (we had moved to a city where we did not have friends, only family, so the social aspect was important and most of us are in touch even today).

But they weren't also caring for other patients, as a professional caregiver would, so it wasn't like they had to separate each in their minds. I could see where a handout would be helpful if someone had multiple clients. That just wasn't the case here.
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VNA ends soon. We may be able to continue with PT under Medicare B. I have requested an RX for PT from the clinic. We shall see.
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