By Kathy Hagen

(Editor’s Note:  Kathy is a long-time member of our Metro Chapter, and a retired attorney.  We all encounter the health care system throughout our lives, more so the older we get.  This article recounts her experience with some recent health problems.  As blind people, we all encounter various attitudes toward blindness and the resulting behaviors of those around us.  Kathy’s experience may or may not be the same as others, but it is important.  Joyce Scanlan, president of our Seniors Division, and I met with the Chief Executive Officer (CEO) of Walker Methodist and the Associate Administrator of Walker Methodist Health Center to discuss the issues raised by Kathy.  The meeting was very fruitful and Joyce will be working with the entire Walker Methodist organization, which operates independent living, assisted living, memory care, transitional care, and long-term care, to educate the staff about blindness and the varying abilities and experiences of blind people.  An article by the CEO follows this one.)

I had lived at Kenwood Isles Condominiums (KI) for about a year, and things

seemed wonderful to me.  We had an independent living situation in the middle of Uptown with access to all kinds of activities.  I had arranged for us to have groceries and prescriptions delivered to the condominium.  Of course, we had Wi-Fi and telephones connected to our landlines so we could communicate with the outside world whenever we wanted to.  We had dinner in the dining room and participated in social events.  I belonged to a book club that I went to some of the time.  Chernah participated in an adult day-care program called Open Circle and was followed by a senior care agency called Home Instead.  We were virtually busy five days a week.  We were a tight couple and did most things together.  It seemed that it would be a happy place for us.  But things changed within the blink of an eye.

I never expected to go through the experiences we have gone through in the last couple of months.  Ultimately, I’m the one who got sick and overturned the apple cart. 

Chernah has dementia and Parkinson’s disease, and the two disorders together caused her to lose stamina quickly.  I was in denial about how fast she was progressing in her diseases.  In the meantime, I seemed to go on with no real problems.  The apex of our year together was our wedding on January 30, my birthday.  Things went downhill from then on.

Chernah entered Walker Methodist Health Center when her symptoms worsened, while I continued living at KI.  Then, approximately the end of February, I had an incident that ultimately changed both of our lives.  I developed a brain abscess.  No one has been able to determine why it happened, but there is speculation that it occurred because of an improperly drained root canal that then carried into my brain. 

The last thing I remember thinking about before my brain abscess was on February 28.  I was lying in bed watching early morning TV when I heard them talking about the next day being Groundhog Day.  I remembered that this was a leap year.  Those are the last thoughts I remember having.  By the next day, I was unconscious.  I remember nothing of the next month.  It was a strange feeling to have people know about me when I didn’t know how they learned what they knew.  For example, in April, I had a brain scan to determine how my abscess was doing.  The scanner said to me, “Oh I scanned you about a month ago.”  Strange to think that someone had scanned me and knew how I was reacting when I knew nothing about it. 

It took me a long while to piece together some of what occurred in that six weeks.  Apparently, I was unconscious for the first month.  Then, when I started to recover, it came slowly.  I had to learn to spell and put words together again, to count and do mathematical problems, to have paragraphs read to me and then to explain what the paragraphs meant.  It was like a short and fast course in academic learning.

I can’t really say when I was fully “back.”  It occurred sometime in mid or late April.  By that time, I had had physical, occupational and speech therapy.  Chernah had reached the apex of her therapies at about the same time as I did. 

Under many health-insurance plans (including Medicare), when you have finished a therapy plan or reached a time limit, their payment ends.  So If we wanted more therapy, we would have to pay for it ourselves, which can be very expensive. 

Chernah, on the other hand, has been diagnosed as needing 24/7 care.  So, at this point, we are looking for a rehabilitation center or nursing home to care for Chernah, and I have moved back to our condominium.  It is very difficult to know that, after 37 years together, we won’t be living together anymore, and that we each, by ourselves, will be reaching toward goals of improvement.  I expect it to be a lonely and isolating experience and I will worry about Chernah all the time.  Chernah is expected to have a short remaining life span.  I know that others at KI have become widows or widowers and have learned to live without the love of their spouses.  So I expect I will do that too. 

Living at Walker has been quite an experience.  As is common throughout the industry, there is a relatively small staff to deal with a large number of residents.  On our floor, approximately three aides for 30 people is average.  Chernah, according to Walker, will need a 24/7 skilled-nursing setting with more staff and fewer people per staff member.  We are looking at places for Chernah that have smaller ratios of patients to staff, and with staff dealing more with dementia.  My friends and I believe that Chernah has much independence left in her.

 

Pointers for being blind and disabled in other ways

It is important to get rehabilitation services for the blind involved right away.  Since many people become blind later in life, this might be best accomplished by getting the NFB of Minnesota and the seniors unit of State Services for the Blind (SSB) involved.  In my case, and in the case of others who are blind first and become later disabled with another injury, it is important to find ways to delineate blindness from the other injury.  In my case, for example, when I tried to walk anywhere, people would say that I had to sit down or I would fall down.  After a while, it erodes your confidence and independence.  You begin to feel like you can’t do anything for yourself.  It’s a weird and scary feeling to watch that happen. 

That’s why it is important to get orientation early in the process so you don’t lose what you already had before you got a second injury.  Also, since most people are more afraid of being blind than of almost any other injury, blindness will always be seen as your primary injury.  It is very hard to convince people that your brain injury might be more serious than your blindness when you’ve been blind your whole life.  

If you have the opportunity, contact SSB before looking at placement facilities.

Get SSB involved right away as the staff at any nursing home will look at your current injury and compare it completely with being blind.  Blindness will always come out as the first injury.  So, with a brain injury, people will always be saying that you can’t safely go to your room or anywhere else, that if you try to move you’ll fall down, etc.  For that reason, you need someone with training to orient you to your surroundings.  My time in the nursing home would have been much more productive if I had had that training to begin with.  For one thing, people who are rehabilitating you but who are not blind do not perceive that you will be walking outside, crossing streets, etc.  They are trying to give you training always to be inside a building.  I didn’t disillusion them because I thought they would probably never let me get out then.  After all, how could a blind person walk down the street alone without being run over?

People lose their sight for various reasons later in life.  If you are a person who has been blind your whole life, the SSB seniors unit can help educate staff to the fact that blindness is only one injury, and in this case not the most serious injury.  It is very important for people not to become dependent and lose confidence because people are not clearly defining your injuries or determining which injury will be the most important. 

I spent long weeks in my room with very little to do.  Sometimes I could make my computer work for a while.  Sometimes I could make my cell phone work for a while.  But neither instrument worked all the time!  If you didn’t have any books with you, which I didn’t because I was taken to the emergency room, it could get very boring.

I was lucky enough to have a rehabilitation therapist who caught on to the fact that I could already use a white cane and gave me one early in my rehabilitation training.  I got a chance to teach her the difference between using a cane and other mobility aids. 

The time has come to go out and seek connections between programs for the blind and programs for people with other disabilities.  You can use many things in common between blindness and other disabilities.  It is important to teach people who are using wheelchairs or crutches that a blind person using a white cane will not disrupt their balance.  That was another problem with people becoming hostile because they thought I would trip them. 

In closing, I want to reiterate that, when blindness is only one disability with other disabilities appearing, it is important to have rehabilitation experts in blindness be a part of the mix.  Now that there will be more money to introduce blind seniors to rehabilitation, I am hoping that the time is right for bringing about this joint effort.  We must always be encouraged to look for more opportunities to be independent and not limit ourselves by fearing what will happen to us if we have more than one disability.