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Working With Workers
The_Sun_Still_Rises
Posted: Friday, October 2, 2015 9:31 AM
Joined: 7/24/2015
Posts: 3020


We had a team meeting yesterday, with the only person who was supposed to be there not there (the ILS supervisor), but everyone else was there.

Listening, I am aware that I do not really like that they are talking to each other making decisions about me...but also equally not liking that there is nothing I can do about this, as it is needed that they talk to each other.

One stayed afterwards, she is still fairly new to me, and we walked around my house to see all the adaptations and tips and tricks I am using, and the ones I am working on...and cannot seem to get into place.

I have often mentioned my sympathy that, it really will take someone coming in and figuring out how I think, to come up with things that will really help.

Somewhere in a suggestion she was offering, as my brain was already taxed and confused from earlier, the reflective part of me realized that I am no longer aware of what will and will not help...and that I will now have to begin leaning on and trusting them to carry forward my life...with me less and less a part of it.

They seem good and willing people who work with me.

This is not an easy journey.


llee08032
Posted: Saturday, October 3, 2015 9:09 AM
Joined: 5/20/2014
Posts: 4406


I am happy you have help and a team of workers to boot! I don't how you pulled that off but please do share. Perhaps others could get help like this also. That is fortunate when so many folks have no help and nothing. Do you have workers to help with mom also? It is a major feat to be a care giver on top of being in stage 5! I cannot even fathom or begin to imagine what it must be like. It is a struggle for me to care for my sick dog who has to eat special prescription foods. I get mixed up easily with his medications, misreading labels and the clean up is exhausting, I don't know if I could handle caring for another person and I am in the very early, early stages of whatever it is I may have. You most certainly are the exception and an, amazingly strong woman! You do very well in how to get help for yourself and in accessing resources as well. Please tell us how to get help like you have?
The_Sun_Still_Rises
Posted: Saturday, October 3, 2015 9:56 AM
Joined: 7/24/2015
Posts: 3020


llee08032 wrote:
I am happy you have help and a team of workers to boot! I don't how you pulled that off but please do share. Perhaps others could get help like this also. That is fortunate when so many folks have no help and nothing. Do you have workers to help with mom also? It is a major feat to be a care giver on top of being in stage 5! I cannot even fathom or begin to imagine what it must be like. It is a struggle for me to care for my sick dog who has to eat special prescription foods. I get mixed up easily with his medications, misreading labels and the clean up is exhausting, I don't know if I could handle caring for another person and I am in the very early, early stages of whatever it is I may have. You most certainly are the exception and an, amazingly strong woman! You do very well in how to get help for yourself and in accessing resources as well. Please tell us how to get help like you have?

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I share this often on the CG boards...

Help was a challenge to come by at first, because you have to know that it is there to know to ask for it.

You can get PCA and Nursing help from your health care...you just call and ask. They will come out and assess.

The next trick is passing the assessment (also confusing until you understand it, I learned the hard way). They will assess you based on ADL's...so you need to be real open and honest about your struggles. For CG's, you don't want to say that you help them with them even if you do, or that they are non-issues because you help. Then they will calculate hours assigned to you based on the assessment.

The key is, you don't have to use your hours for the things on the assessment...you can use them for other things.

I needed help going to the grocery store when I first called. I hadn't been able to go for over a week, and I hadn't had food for days. She assessed that I needed help with my feet...and said even before the main assessment, she could send someone for 15 minutes a day to wash my feet. I couldn't believe this, insert cartoon image of me pulling my hair out...I said, "really, you are going to send someone to wash my feet, I haven't eaten in 5 days...this would be funny of it wasn't so tragic.' What I didn't know then, was that I would combine that time into one day and go shopping with that time.

At the big assessment, I got more time. They managed the PCA company, hired and fired for me.

You can also get a Care Coordinator from your health insurance.

If you have Medical Assistance, there is more care you can get. You can get a Waiver (all states have them). The waiver programs are designed to help people stay in their homes and out of nursing homes. They find it to be cheaper. They give even more PCA time, give housekeeping time, and ILS services, and even a Case Manager...and I even got new cement stairs put in.

People with mental health dx's can also get what is known as an ARMHS worker who functions pretty much like an ILS worker.

Most of these programs are obscure to the public, and are usually found out about through various things for people with disabilities (why I think most don't find out about them).

They come with the problem of the fact that you have to direct them. I am moving into the space where I can no longer direct them and so am not sure how that looks.

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As to caring for my mom, it is easier than caring for me...she has had the same routine for years (she likes things absolutely the same every day), so that pattern is more ingrained in me than anything else.

She is also my motivation...if I didn't have to keep climbing the stairs to help her, I likely would have subcombed to a wheelchair. I had an old dog back then...and he too was my motivation because I had to let him out all the time. if not for the both of them, I am sure a few years ago when I was mostly bedridden, I just never would have gotten out of bed again.

Their needs force me to remain functional...and in many ways I am glad of that. I don't think I am exceptional, I just maybe had more necessity than most. I also created many adaptations to help me get through the day. That is one thing I love about the video groups, sharing adaptations...since we can each only think up so much.

She does not qualify for services as she is straight Medicare...she would need a 3 day hospitalization to get services, and even then they would be temporary.