An Important Tip for Caretakers

16 years ago at age 39, I became my husband’s caretaker.  It was August 2, 1998 when my husband John suffered a Grade 5 Subarachnoid Hemorrhage.  He was only 40 years old. 

Since this is my first blog, I will share a bit of our story, and then I'll provide an important tip that I hope will help others in my situation who are feeling helpless, hopeless, and overwhelmed. If you would like to skip the story, see a helpful tip, "How to Find a Better Nursing Home" below.

For those of you who don't know what a subarachnoid hemorrhage is, go to http://en.wikipedia.org/wiki/Subarachnoid_hemorrhage.  It says, "Up to half of all cases of SAH are fatal and 10–15 percent of casualties die before reaching a hospital.  Those who survive often have neurological or cognitive impairment."  After 5 weeks in Columbia Presbyterian’s Neurological Intensive Care Unit and 6 weeks in Kessler Rehabilitation Center, John came home and things have never been the same.

On December 26^th, it will be the 2nd anniversary of the date I finally had John admitted to a nursing home called Lincoln Park Care Center recommended by Social Services, but sadly, I find I am still a caretaker.  

 

4 Chicken Nuggets & Fries 

I visit several times a week and have to advocate for John constantly for many reasons: making sure he is given the correct medication, taking his clothing home to wash because is clothes keep getting lost, bringing him food because the portions he got weren't enough to feed my Pomeranian and demanding second opinions.  If you read the menu next to the picture to the right, you will notice that John's last name is spelled wrong and the meal is entirely different that what is on the menu.  After 3 family meetings over a year's time, they finally doubled John's portions.  See the difference below.

Dinner Before

Dinner After

 

John had a Lacunar stroke on Father’s Day in 2013, and another stroke on October 26th, at least the symptoms were exactly the same but he was misdiagnosed with drop foot and neuropathy.  I demanded a second opinion and the neurologist agreed with me, although he said John has so much damage that he couldn't see evidence of a new stroke.  Lincoln Park Care Center will only hold John's bed for 10 days and then they pack up his belongings.  If they don't have another bed available, he has nowhere to go.  Since I didn’t want him to go back there and the social workers at the various hospitals John has been in never helped me, I decided I had to do something myself.

How to Find a Better Nursing Home:  I spent an entire night last week researching the internet to see if I could find a better place for John to live.  By accident, I found myself at medicare.gov/nursinghomecompare.  You put in your zip code and click search, then narrow down your search by using various filters.  You can also just put in the name of a nursing home and search and it will give you voluminous information about that home including inspections and complaints.  You can read and/or print the actual full reports which include everything that failed the inspections and why, and what complaints were made against the facility and how they were investigated.

I did a search and chose “Within 25 miles”, “Overall rating of 5 Stars” and I checked Accepts Medicare and Accepts Medicaid.  My search brought up 119-5 Star nursing homes. 

The bad news is that all the nursing homes I have called so far have a waiting list.  The good news is that I am adding John to the waiting lists of 5 star nursing homes within 25 miles that I never knew existed, and you can eliminate the lesser quality nursing homes immediately!

I finally have confirmation that Lincoln Park Care Center is a poor nursing home, and not that my expectations were too high.  They are rated 2 Stars by Medicare, and as I stated above, I was able to click on all inspections reports, see where they failed, and also see complaints about them and read the actual reports.

My heart goes out to all of you in my position, and I hope this information helps you find a better home for your loved one.  I'll keep you posted.