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Being My Own Caregiver, Getting Lost, And The Minutia of it All
The_Sun_Still_Rises
Posted: Thursday, October 29, 2015 10:37 AM
Joined: 7/24/2015
Posts: 3020


I am generally very open about what I need, and what I am going through, and I am still able to express in detail the obstacles that I face in regard to many things.  Because I am so open, and people tell me that I am clear and articulate well, I have endless trouble understanding why the people who work with me still just don't get it. 

Don't get me wrong, I appreciate and care deeply about the people we have pulled together for my care team, and although we still have some people to put in place...the people I do have are very good.  This isn't a complaint about them...more of an expression of the situation, an effort to seek workable solutions, and the hope that someone has another way to see things, or says something that might cue me to some insight that I just cannot seem to pull from my brain...and help me make this make sense.

So I got a new Care Coordinator from my insurance, she seems great, has a mother who has AD...but she is also a bit too quick to assure me that things will be fine. 

It is no secret that I have been struggling for a while now, and I very much need to lean on the people who are there to help me.  So I trust her assurances and she sends me out to the dentist alone, with transport...she says it will be fine and the office will take care of me.  It wasn't fine, after the appointment they told me to leave...so I did, and I got lost...the very thing I feared, and that I have worked so hard to not have happen. I feel a bit defeated because after all these years limiting my life, and all the planning, and how well I preserved my ability to tell people...they still just don't get it. 

In a great many respects I am my own caregiver, and that is both beautiful and wonderful as well as frightening...because even in my best, well-laid plans, I am failing myself.  

So now we have a neurology appointment on Tuesday, with a very good neurologist that specializes in dementia, and they got me in early so we cannot cancel it...but I have no one to go with me.  Again, I will have transport.  And I rack my brain to find solutions.  I have spoken to many of my workers asking for help find a solution (OT, ILS, Care Coordinator, another worker)...but they sort of don't know what to tell me and keep thinking it is someone else's job. 

 None of my workers, or my daughter, is available to go with me.  The Care Coordinator should be able to go, per her boss, but she claims she is unaware (which I read to be she doesn't really want to).  ILS had said that she could drive me to all my appointments, and despite me saying that seemed not practical and did not seem right, she assured me it was ok...until we have a situation where I need her, now she is unavailable, which makes more sense.

Why will no one talk honestly and openly about our futures?  Why is it that people just say things will be ok, when they are clearly not ok??  I need clear, honest, REAL answers.

ILS did call to arrange transport, since my medical care coordinator now seems hesitant to do.  She found out something interesting, there is a different kind of transport they offer for people like me...that takes you into your appointment, and comes back in to get you. So we got signed up for that.

So this morning, a brain cell rubs another brain cell, and it occures to me...after talking to the Care Coordinator, who was less than helpful...that I should just do her job for her and call ahead to the clinic and explain the situation...and ask for their help. So I do, and I happen to get (without trying to) the nurse to the actual neurologist that I will be seeing...she even put a note in their system and told me to give the receptionist my pick up ticket (and explain again) when I get there, and they will keep me there and call for my ride. Thank you thank you!!

Everyone who works with me tells me that I need more services, but no one calls my Case Manager to get this process started.  So I called her too and left a message saying I think it is time for more hours as my needs have clearly changed. 

Thank goodness I had a few brain cells this morning, it is unusual for me to figure solutions so quickly...usually it takes me a few months.

I need to have all this stuff not left to me, though.  I don't know how to tell them in ways they will get it.  I need them to get it and step up.  I am not mad at them or frustrated, I am scared.  As I say, I like them all very much and wish to keep them...as far as dice rolls go, they are the best I will likely get and it has been a long time in collecting them.  Now I just need them to work together and find me solutions for things I cannot find solutions for. 

The Care Coordinator tells me that I try to take care of them too much, I want to say well duh, I'd give anything to stop caring for them...but it seems that I have to do everything to make the way easy for them to help me.  I want them to start taking care of me.  I need them too, because the job is too big for me. And I have exhausted everything I can do to help and support myself...and I feel I did well getting myself this far. 

Anyways, sorry so long...I'd love thoughts, insights, and suggestions to how I can change the dynamic.  Thanks.