Dear New Home:

May 26 2011 in by Trish

Who decided it would be a good thing to treat the family of one of your residents as if they were someone to be patted on the head and told, “There, there.  Don’t worry your pretty little head about this.” 

Let’s review events since move-in three months ago:  You changed his medication schedule because it would be more convenient for you (and, oops! surprise! he had more seizures!).  You called to change his neurologist appointment that had already been scheduled for six months (by me) because he was having more seizures and you needed to know why.  (Um, see previous sentence).  You tell me you encourage family visitation (sure! come over! take him out! he’ll love it! we love family involvement!) and then require me to notify three people and sign a release (god forbid I bring him back later than when I told you I would).  Now you tell me I can’t arrange an x-ray for his sore back because that’s your job (but then your solution is to make him miss Day Program and sit in an ER for the x-ray?). 

NO. 

You are not treating me as a partner in Robert’s care.  Instead of actually trying to help me care for Robert, you have been trying to wrestle control of him from me since he moved in.  To what end?  I understand you have state rules and regulations you have to follow.  I understand they may be burdensome.  I understand you have paperwork to fill out when Robert falls.  I understand you want to keep him safe (cynically, I suspect, so you don’t have to fill out more paperwork).  I understand that, for many different reasons and due to many different situations, families are not always as involved in the care of their loved one as I am. 

I. DON’T. CARE. 

I am looking out for Robert’s best interest.  Period.  I have Power of Attorney over all aspects of his care.  I choose where he lives and which day program he goes to.  I provide his clothing (no matter how many times his pant’s size changes).  I keep him supplied with 7-Up because that’s what he likes (but make him drink water because that’s what’s good for him).  I make sure he has a triple-blade razor and Crest toothpaste because he’s used to those things.  I buy him protective briefs to wear at night because the ones he wears during the day don’t work well at all at night (and it’s apparently impossible to get both kinds approved by Medi-Cal).  

I get to decide if he should miss a day of Day Program (something he loves!) and spend several hours in an ER for an x-ray and urinalysis (your plan) or if he should get a referral from his neurologist to go to a lab to have these done in a quarter of the time (my plan).  I understand you have budget constraints. (But is the ER really less expensive than a lab?  I find that hard to believe.).  I get to decide that you have dismissed his back pain for far too long and I am now going to find a solution that works for him.

I AM ROBERT’S SISTER AND WILL NOT BE DISMISSED.

There, there, New Home.  Don’t worry about this.  This isn’t a power struggle.  This is a sister looking out for her little brother and making sure he has the best care, the best place to live and the best place to socialize while being safe and healthy. 

I’m convinced Day Program is the best place for him.  I’m not convinced living at your home is the best place for him.  What I need for Robert is a home that will partner with me to provide him the best possible care. 

Can you be that place or not?

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