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
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?
12 comments:
This sounds incredibly stressful. I wish you the best in finding a new home for your beloved Robert. My sister is studying to become an occupational therapist and she is very talented at looking at the whole picture, including the family and other loved ones. I'm hopeful that you will find great care.
ROAAAAAAARRRRRRRRR!!!!!!!!!!!!!!
bccmee, It is stressful! It shouldn't be this difficult (although, I have to admit, my standards are pretty high). There are great aides who are with him day-to-day but it's the directors of the organizations who seem to make things difficult. I'd like to think they're trying but get caught up in rules & regs. Thanks for reading and for letting me know there are people out there like your sister who get the big picture.
Oh Trish -- this is incredibly frustrating!! How do they justify the ER over an appointment?? Are these state guidelines or the home's guidelines?
To navigate this crazy system you have to be strong and feisty --- and luckily you are both! Now I guess it's time for tenacity in fighting for Robert's care.
Is there anything we can do? (letter writing campaign, anything?)
Heidi & Atticus
http://www.atticusuncensored.com
"commentary to give you paws..."
Kathy, You said it, girl! I know you understand where I'm coming from. We will roar to get our loved ones proper care. Hope you and Hubby have a wonderful day!
Heidi, Your support truly touches me. Being ready for action is so appreciated and I just may take you up on it. I need to figure out where these ridiculous ideas are coming from and address the problem from there. Budget cuts? State regs? If it's the budget, it doesn't make sense to cut payments to doctors or labs only to have patients go to the ER. Once I sort it out, we can start writing some letters. Thanks, Heidi!
Seriously Trish -- anything I can do, I'll help! Did you see my lengthy response to you on my blog? more info there about my thoughts on this subject.
Power on! You have support!
Heidi & Atticus
Trish, The day-in day-out of monitoring and providing care is so exhausting, I really feel for you. Add to that the lunacy that seems inherent in these systems (the ER hardly seems like a good choice when other options are available). Your letter is lovely and powerful. And I love the small details you put in that show how much you respect your brother's needs and preferences. The personalities and quirks and special delights of elderly people in care and people with disabilities often get loss. You are treasuring your brother's spirit, not just his medical needs.
Judy Stone-Goldman
The Reflective Writer
“My cat owns me, my clutter stymies me, my writing frees me. Word maven loves—and learns from—ordinary life.”
http://www.thereflectivewriter.com/blog/
Heidi, I did see your comment on your site which I very much appreciated. I think the home (maybe all homes) gets so bogged down in paperwork, etc. they lose sight of common sense and lose the ability to do "little" things that count. Like buying fresh fruit or going to a lab instead of an ER. It is a work in progress for all of these facilities. I'm here to help them along. :-)
Judy, Thank you for your kind comments. It is a struggle sometimes to balance both (when faced with time constraints when I visit and the choice is cleaning him up from an accident or playing cards, cards may have to wait for another day). I am fortunate to have a very supportive family and a wonderful support group of other caregivers (who also cherish their loved one's spirit and individual personality).
You are a wonderful sister and advocate. You CARE. So much more than many other people.
Thank you, Joan. I am passionate about advocating for Robert's care but I also want to advocate on behalf of others who may not have an outspoken, ready to make heads roll sister of their own. I hope you come back to visit. (I'm really happy to have been introduced to your blog, by the way.) Take care!
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