Breaking Point

 Originally Written Between 2016-2017                                 

I know you have all heard my sad tales over the last nine months concerning my brother, Steve, who has the frozen gait-type of Parkinson’s disease.  To recap just a little:

§  Around Thanksgiving time last year, Steve was given 30 days to move out of his assisted living facility in Hudson, Wisconsin because they were giving him more-than-three hours of hands-on care every day.  Wisconsin law allows only three hours.  And, so he had to leave.

§  My nephew, Matt (Steve’s younger son – his older son lives out of state) found an assisted living in Brooklyn Park.  We thought this would be a win-win because Matt lives in St. Louis Park and I live in Coon Rapids and therefore, Steve was fairly close to both of us.

§  Within a week of being admitted, he was in pain because of a bladder infection that was ignored and he was sent by ambulance to North Memorial.  No one from the facility accompanied him.  Now, my brother cannot walk without help or a walker, or speak, and therefore cannot communicate except for thumbs up or thumbs down hand motions.  I presume they sent a written report with Steve outlining his problem because two days later, when Matt was visiting his father, he noticed the North Memorial wrist band was still on Steve’s wrist and he asked what that was about.  After storming over to the executive director’s office because no one was contacted when they sent Steve to the hospital, Matt found out that someone forgot to notify us and “Gee, we are sorry about that.”

§  Two weeks later, money was stolen out of Steve’s wallet.  We had no proof and Steve wasn’t sure how much – but Matt reported it anyway.

§  Matt then installed a Nanny Cam in Steve’s room.

§  A month later, we caught one of the employees on camera going through his wallet and looking at each credit card.  Right in front of the camera!  But, because no money was actually taken, the employee was only suspended. Only after showing the director the tape, did he fire the employee and report it to the police.  His name is now on a list of people who cannot be hired to work as a health aide in Hennepin County ONLY.  Not good for anyone living in an assisted living facility in Ramsey or Anoka counties!

§  Soon after the attempted robbery – around 8:30 at night, the Nanny Cam captured the following:

o   Steve pressed his call button for help because he needed to go to the bathroom.

o   10 minutes later, he pressed it again since no one had responded.

o   After another 2 minutes, he pressed it again.  But, this time, being desperate - he used the life chair’s remote to get him in a standing position.  He grabbed the handles of his wheelchair and started to walk to the bathroom.  The wheelchair moved faster than his feet and he fell.  The camera shows him lying on the floor – crying out in a very soft voice – help!, help! – and also pressing his call button at least 10 more times.

o   No one came to answer the call button for 47 minutes.  But, Matt asked for a printout of what time his call button was pressed and when it was “cleared” or answered and he linked it to the Nanny Cam tape.  Every time the button was supposedly cleared, the tape showed that no one was in his room helping him.  Evidently, they can clear the button remotely.

 

Well, that did it.  That was our breaking point.  Time to find another place.  And that is where Norm and I really got involved.  We had to act quickly before they literally killed my brother!  

 

Because of his extreme limitations, we only found two places in our area that would take him.  The place we chose is an Advanced Living facility that will take a resident through hospice care.  It’s only five miles from our home and houses a total of 20 people.  The one-level building is less-than-two years’ old.  There are 8 men and two women in his wing of the building.  The people who work there are so caring and friendly and professional.  We thought we had found the perfect place.

 

And in most situations, we did.  However, on June 9^th when it was 95 degrees, I bought Steve a big Dairy Queen Blizzard and brought it over to him in the afternoon.  I walked into his 400 square foot room and was almost knocked over with the heat!  It felt like I had put my head into a hot oven.  I asked one of the caregivers if he could tell me where the thermostat was so I could adjust the air conditioning and he said that they don’t have air conditioning in the residents’ rooms!

 

Do you believe that?  Outside the building, they have four huge central air conditioners.  Their brochure says that they have central air conditioning.  But, I soon found out that the central air only cools the central hallway, the common areas that include the kitchen, dining room, and living room.  And….. ta-dah! …. The Housing Director’s office and the RN’s office.  But….. not the resident’s rooms who actually have to live 24/7 in their rooms.

 

We were told that he (meaning Steve) should remember to keep the door open to the hallway to let the cool air in, close his windows, and keep his blinds down.  My brother – who cannot get out of his chair without assistance (they now have to use a standing lift), cannot walk over to the door to open it, can’t move the couch to pull down the shades, and has no upper arm strength to close the windows.  Thankfully, the caregivers try their very best to do these things for him.  And, because his eyes are very sensitive to light, he keeps the overhead light in his room off.   Can you imagine sitting in a chair or lying in bed – literally 24 hours a day in a dark HOT, HOT room and paying almost $6,000 a month for that privilege??

 

Well, my nephew came to visit Steve a week ago yesterday.  Steve’s shirt was soaking wet from sweating so much.  Matt changed his shirt – which we found out later, they change his shirt 3-4 times a day because he sweats so much on 80 degree plus days.  Five minutes after changing his shirt, Matt saw sweat dripping from the top of Steve’s nose.  

 

Another breaking point!  He told Steve that he would be back in ½ an hour.  Matt drove to Home Depot and bought a ventless air conditioner.  I’m not sure what they mean by ventless when he had to place a large tube through the window.  But, anyway, all he had to do was plug it in.  Insulation was provided to plug up the window.  Steve finally could cool off.

 

Well, not knowing what my nephew had done the day before, I went to the facility the next morning to have the RN fill out some paperwork so we can hire Metro Mobility to provide transportation to and from his various doctor appointments since we cannot transport him in our van anymore.

 

The housing director caught me when I came in and said, “Did you know your brother has an air conditioner?”  I said, “Great – when did you do that?”  She said, “You mean, you don’t know anything about it being installed yesterday?”

 

Thank goodness Matt didn’t tell me what he had done because I could then truthfully tell her that I had no idea what she was talking about.  We both went to Steve’s room and there he was – sitting quite comfortably (meaning no sweat dripping from his nose) in a 72 degree room!

 

However, the air conditioning was not running.  The director explained that she was just told by the owner that they had to turn off the machine and wait until he could go there with his electrician to make sure it was properly installed.  So, even though it was cool when I arrived, the temperature went up significantly throughout the day.  The owner and electrician didn’t come for two days.  They took one look at the plug, they said it was okay to use.  But – they asked that we not complain about the air conditioning – to others – anymore.  In other words…. “case closed.”

 

Well, they might think that this case is closed, but, I’d love to have the owner of this advance living facility stay in one of the other resident’s room for 24 hours on an 85 degree day.  I think Home Depot would make a lot of money selling 19 ventless air conditioners the very next day!