Notes: Lessons Learned

Do not think of this as a business relationship with the company that is taking care of you or your loved one (but it is and never forget that either).  But when it comes to the hands on care: Go straight to the caregivers and bond with them. They are the closest link to success or failure. Even their supervisors cannot get them to take better care of you if they do not want to.

• ·       Don’t give up having your own doctor!!!!  the SNF says they have to have privileges (which is a little too familiar for me) or you can take your person out to a doctor. This is vital, too much of the fox guarding the hen house otherwise.
• ·       Keep a Video diary. This would be good especially if you are doing appeals. I didn’t do this and am kicking myself.
• ·       Get on as many waiting lists as you want. Check out several facilities that are close by and nice and get on the waiting list right away. You never know what might happen and you can always turn an offer down. If I had known this My mom would not be in the unacceptable situation she is in RIGHT NOW. I have deep regrets over this and hope you can avoid it.
• ·       Let’s say you and your loved ones are lucky and have long term care insurance (which is very costly) and you might be able to use it for four years (I think that’s all the “term” is good for), then the next step would be to start selling off your assets and living off of them to the tune of $4000-10000 per month (that’s what a bed and all the trimmings cost at these skilled nursing homes) until all of your assets money is all gone,  and then you are broke and go into the “system” AKA Medi-cal. Then you and I will be experiencing all of this and the reason I am writing this blog, so pay attention, this could be YOU.
• ·       Do NOT depend on anyone to be on your side.
• ·       Always question everything and go right to the source; i.e. Medicare, Medi-cal, etc.
• ·       Do your families laundry. They lose (steal) things at the hospitals and skilled nursing facilities. So in bold, large letters label everything.
• ·       If you have Medi-cal; do not think that you will be able to have a bed that is acceptable to you. You may end up in a three or four person room with people that are crying or screaming or have other bad inconsiderate habits. There are waiting lists for beds. Especially Medi-cal beds, the reason is that the SNF are for profit businesses and they limit the number of beds they are willing to take on in their facility. It’s a money thing, of course.
• ·       If you have lots of money ($4000-10000 per month), then you will have your pick of places to live out your last days. (see above; only good for a  little while, thus the name “term”)
• ·       Appeal if you don’t feel like you got a fair deal. Every agency has its process, use it. Many people just take whatever the doctors and facilities tell them as gospel. You may not win but, at least you got your chance to tell your story, but again do not trust others to be on your side. You have to fight. 
• ·       I learned something very valuable today in the meeting. I thought the CNAs had much more training than they do: SIX weeks is all they have. So do NOT think they are going to do much more than change the person and get them water and up and down into wheelchairs etc. Do not EXPECT them to notice anything wrong and report it either. I imagine the nurses do not care for that much. So, take all of your “observations” directly to the nurse to try and get action taken.