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Sleepless Nights



Too much going on in our lives right now and the brain doesn't want to shut off at night so I'm really needing some sleep. A cousin was diagnosed on Jan. 15 with leukemia and had started chemo within days of diagnosis, but it's now tearing him up inside. Nobody seems to know how long he had it before the diagnosis. He was moved to ICU, had been hooked up to all kinds of machines and has now been taken off most of them while they wait for him to expire. He is 62 years old and has a 12 yr. old daughter. I think that's why he had chosen to try to fight it, but the cancer is winning out. His older sister, who lives near us in AZ during the winter months flew out to be with him as well as the youngest sister from N.Dak. They are all there at his bedside.


Mom's situation with falling and breaking her ankle in three places has gone from bad to worse. Dr. doesn't want to do surgery at her age (91) and with her other health issues, so he splinted it and she has been bedridden since. Pain meds are making her goofy - yesterday she was in another world, not aware of who was there to visit and speaking only in German so nobody understood her. She is also having some issues that lead them to believe her cancer is back (she has been in remission for over 10 years). Further testing is needed and comfort care may be next. It's difficult being so far away and having to rely on information from my sisters who are there to help out. Mom was moved permanently from the assisted living facility as she is now considered at least a 2 person transfer.


We started our new home health agency this week and when the CNA arrived on Tuesday I was so happy to see a tall, strong young man who could handle Gary. My neighbor's new roommate, who was a physical/occupational therapist before he became disabled back around 2000 wanted to come over and go over some things that they could do to work with Gary's trunk control and motor control so we would have less strain on our bodies handling him. He was here for the first three hours, but I felt it was somewhat distracting for the new aid as I was trying to show him the routine of getting Gary up, showered, dressed and fed. I was talking to the older neighbor tonight and she asked if I wanted Dave over here tomorrow and I told her "probably not" as I wanted the new CNA to get familiar with actually doing the work as opposed to standing and listening to what should be done. She said "okay, I'll tell him he's not welcome." Wow - what a slam! That wasn't what I said - I just want the CNA to have time to get familiar with Gary and his needs before he starts worrying about what kind of pt or ot he's going to be doing with him. Since I am the one paying for the agency, I don't want to be doing all the work when the whole purpose of having an aid here is for me to be able to get out.


So far the best part of this week is that we got our taxes done early and don't owe any money. Since medicare doesn't pay for sh** , I had a lot of medical deductions which helped considerably. I'm going to take an Aleve and go to bed now, and hope I can get at least a good 6 hr. sleep if not more.




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Sarah, seems like you are going through a bad patch with family issues.  i know how it feels to know I couldn't possibly go to someone with Ray so dependent.  I know for you as for me that is not a good feeling, But then I always knew where my priorities had to be, just doesn't make it any easier, does it?

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I am curious about your comment regarding what medicare covers. Unless you are using providers that don't accept medicare, you should be paying, after a modest deductible, 20% of Part B costs and little or nothing for Part A. If a provider accepts medicare, they generally must reduce their fees to agreed-upon amounts that are often much, much lower than the fee as originally billed. And of course like any insurance there are limitations such as for therapies, etc. Most providers are pretty good at knowing these rules. Medicare is my primary insurance and I have found their payments generally to be prompt and as-promised. And with a gap insurance as well, the only expenses I have out-of-pocket are some co-pays for prescriptions. You might want to check out www.medicare.gov if you haven't already. Please forgive me if I am "talking down" to you; I hate to see anyone not get the benefits which they paid for. And don't forget to deduct medical miles driven, as that is often overlooked. I was shocked to find that we had driven over 2000 in the last 4 months of 2015. For 2015 the allowance was $.23/mile. This year will be $.19. (Sorry, recovering tax accountant here.)


Best of luck with all your other struggles. It sure does sound like a rough patch. Sending healing thoughts your way.

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