It finally happened this morning.  I went to the kitchen just for a moment.  Then came the usual thump.  She was down.  The last time she fell, we had to go back to the Dermatologist to re-sew a two inch row of stitches, actually two rows, one deep in the wound and one pulling the surface of the skin together.  She had fallen directly on the wound and had broken the stitches.  The Plavix thinned blood ran freely.

It was just the other day that it dawned on me that we were then almost three weeks out from that drama, and there had not yet been another fall.  To appreciate the significance of that record, you need to know that Mary Ann has fallen multiple times a day, up to a dozen, in the recent past.  Up to that last disastrous fall, the pattern had been that falls came daily, sometimes two or three times.  On occasion there would be a day or two without a fall, but that was rare.

Mary Ann falls for a variety of reasons.  One of them is a symptom of Parkinson’s.  In fact it was one of the central symptoms that took her to the doctor when we first suspected that there was something wrong late in 1986.  She had pain and tight muscles in her left shoulder.  She had pain and stiffness in her left hand.  She would on occasion lose her balance and roll to the ground.  Maybe five years before that, we went on a couple of three day long church ski trips with other famiilies.  Mary Ann struggled especially with getting off the lift.  She always fell and had very much trouble getting up.  Finally, she just chose to stay in the lodge while we skiied.  Little did we know that a few years later the diagnosis of Parkinson’s would come.

That particular symptom of Parkinson’s cannot be corrected with a pill.  Physical therapy can help, but other than that there is no medicine that restores the balance.

A central symptom of the particular expression of Parkinson’s with which Mary Ann has been diagnosed is called bradykinesia.  Wikipedia has a good definition of bradykinesia: “Slowed ability to start and continue movements, and impaired ability to adjust the body’s position.”  When Mary Ann tries to start moving, the top part of her body may move forward while her feet refuse to move. Of course, when that happens, she falls unless there is an arm or a walker supporting her.

She seldom tries to use a walker any more.  She doesn’t have the physical strength to move it ahead of her.  When she did use it, she would often lean forward, body moving and feet cemented to the floor, leaving her in a very precarious position, hanging on to the walker for dear life.

With bradykinesia, a soft carpet may as well be wet cement.  Her feet just won’t move.  We have replaced all the carpet in the house with a short-knapped berber that is firm enough that she can move her feet (and we can roll the transfer chair), but soft enough to cushion her falls.  Most falls still leave a rug burn or a bruise or both.

When Mary Ann gets out of her transfer chair and tries to turn to walk around it, falls often happen.  When she tries to pick up something from the floor (now it may be something that is not actually there) she is, of course, vulnerable to falling over.

Since her stroke and the addition of the Parkinson’s Disease Dementia, a Lewy Body Dementia, Mary Ann has had some spatial perception problems.  Getting the utensil where she intends it to be when eating is a problem now.  When she is walking, sometimes she just does not perceive accurately where things are so that she can move her feet around them rather than trip over them.

In the last few years the Orthostatic Hypotension has been added to the mix.  That is a term that refers to the body’s inability to constrict the blood vessels fast enough to raise a person’s blood pressure to counteract gravity when standing up.  An adequate supply of blood is not pumped to the brain.  The result is called syncope, a fancy word for fainting.  It is not hard to figure out what happens next.  When people faint, they fall.

The time not so long ago when Mary Ann was falling up to a dozen times a day, it was the fainting that caused the increase.  She now takes medicine (Midodrine) to raise her blood pressure.  The medicine has helped some, but it has not eliminated the problem.  In fact the high blood pressure is taking a toll on her heart and her kidneys. There are often trade-offs that need to be made to maintain a reasonable quality of life.

Maybe now you can understand just why it was such a monumental accomplishment to make it twenty-two days without falling.  I am not completely certain why we managed to avoid falling for so long, but there are some things that seem to have potential for helping reduce the falls.

One thing is that Mary Ann’s last fall was pretty traumatic.  She has fallen hundreds of times and rarely done much damage to herself.  This time there was damage.  The return trip to the Dermatologist to be sewn up again was no picnic.  Mary Ann’s automatic pilot may have been reset to reduce her inclination to put herself at risk for falling.

Another thing has been my increased commitment to getting to her before she has a chance to fall.  I now spend less time in another room unable to see her.  I move more quickly when I suspect she might be on the move.

Since that last major fall, I have obtained the audio-visual monitor that allows me to see as well as hear her when she is lying in bed or sitting in her chair and I am at the computer.  I am now able to anticipate her getting up and heading out.  I can see her shifting or leaning forward, about to get up.  I am able to be there and help her before she falls rather than waiting for the thump and running to pick her up.

One recent change that may be having some sort of subtle impact on her stability is the new medication she is taking, the Exelon Patch.  It is intended to help with memory and alertness. To my knowledge it is not supposed to have any impact on the motor symptoms.  While I can’t put my finger on any identifiable dramatic change since she has been using it, she does seem to be doing better in most areas of functionality.  Since we live on a roller coaster of symptoms that come and go, sometimes very quickly, most of the time there is no clear reason for declines or improvements in Mary Ann’s ability to function well. There is no telling for sure how much, if any, impact the patch is having.

In the matter of this morning’s fall, Mary Ann, as is usually the case, did not hurt herself.  I still contend she could lead workshops on how to fall without hurting yourself.  I was upset that it happened, but no one can prevent the falls completely. As a full time Caregiver, I have to accept that. Most of all, I am still celebrating twenty-two days without a fall. Of course any decent celebration requires ice cream.  Two Pecan Cluster Blizzards from Dairy Queen beats a champagne toast any day.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

I got the dreaded phone call.  I was at work, Mary Ann was at home with a wonderful, capable Volunteer who had agreed to stay with her for a three hour shift.  Some days there were as many as five different people to cover all the time I was at work, which often included evening meetings.   Mary Ann had fallen in the bathroom and hit her head on the ceramic tile floor. 

Understand, Mary Ann is not the sort to just sit still and wait for someone to tell her when she can get up.  Her independence (a euphemism for stubbornness) has carried her through challenges any one of which would have taken a person with less strength of will.  Mary Ann got up to use the bathroom — a simple and necessary task.   Parkinson’s or not, Mary Ann can move like lightning.  She moves with a determination that says, don’t mess with me, I can do this.

Either before or after the task at hand, as she stood, Orthostatic Hypotension entered the story.  That is one of the many things we have come to know about.  We now know more than we ever had any interest in learning.  I could have gone to my grave without ever knowing what Orthostatic Hypotension is, and would have been content and fulfilled.  When anyone of us stands up, our blood pressure drops.  In an instant our blood vessels constrict to raise our blood pressure so that, among other things, our brain has enough blood to function fully.  OH is what happens when people who have a compromised autonomic response (in her case, medicine and disease process) stand up and the resulting blood pressure change is not corrected.  The person faints.  The doctors call it Syncope.  Somehow knowing the medical jargon makes me feel better able to deal with the multiple medical professionals on our team.  They may very well think it sounds silly, since I am sure I don’t always use the terms correctly. 

Here is the important part of this story.  Mary Ann fell on that hard floor, smashed her glasses into her face producing a bloody nose that would not quit.  What appeared worse than that was the giant hematoma on her forehead.  Because of the blood thinning character of Plavix, which she takes to help prevent another stroke, her forehead filled with enough blood to bring the protruding bump to the size of a softball. 

When I arrived home, she was still on the floor with her face down, blocking our veiw of the hematoma.  It became obvious as soon as I got her up off the floor that we needed to get to the Emergency Room.   

How can we keep our Loved One safe if we use Volunteers? 

First of all, we can’t!  We cannot keep our Loved One completely safe whether we use Volunteers, or paid Professionals, or never leave her/him alone.  Either we come to terms with that reality or go completely nuts, becoming useless to our Loved One and ourselves. 

With that said, we do have an obligation to use whatever means are at our disposal to create as safe an environment as possible.   This is not just about the safety of our Loved One.  What can we do to keep ourselves and the Volunteers safe?  If we hurt ourselves trying to help our Loved One we will cease to be able to give the care that is needed.  If a Volunteer hurts him or herself, we will feel responsible for our part in letting them be hurt, their lives will be disrupted, they will not be able to help your Loved One, and someone will be liable for any costs associated with their care. 

Are you scared yet?  Have you just phoned all the Volunteers and told them to stay home?  While we cannot guarantee no one will be hurt, we can make responsible decisions on what to do to minimize the likelihood of someone being hurt and at the same time prepare for that contingency. 

What follows are just a few of the things we have done over the years to address safety issues:

Mary Ann wears a gait belt at all times — something she hates.  A gait belt is just what is sounds like, a belt that is a help when she is walking.  I walk beside her (when I can get there fast enough) and put my hand lightly on the back of the belt.  Because it is at her waist, high enough in relation to her center of gravity, if she begins to get out of balance, it takes very little pressure to pull her back from going over.  We found a non-profit that makes them in a variety of colors, www.gaitbelt.com.  Gratefully, they are also very inexpensive.

After Mary Ann’s fall in the bathroom we began by putting down on the floor mats for children’s play areas. We now use them in the garage  to cover the area she is in when she goes out the door into the garage to get in the car.  We got ours at Sam’s Club, but here is an online link showing the floor covering:  http://www.matsmatsmats.com/kids/playroom-floor/soft-floor.html  We found a shower mesh floor that avoids the problem of mold due to moisture trapped under the mat, it resists mold.  It can be found at http://www.duragrid.com/shower.html  That is what now helps protects Mary Ann from hurting herself badly if she falls to the floor in the bathroom.  It looks good and is easy to install and remove for periodic cleaning.

We found that some of those people who served as Physical, Occupational and Speech therapists were willing to give their time to come to a gathering of Volunteers to demonstrate how to help Mary Ann without hurting her or them.  Once in one of those training sessions Mary Ann got on the floor and the therapist showed how best to help her up.  They were willing to demonstrate simple activities that could be done with Mary Ann to provide appropriate mental and physical stimulation.   

We put together a booklet filled with all sorts of information.  It includes contact numbers, whom to call for help getting her up if she falls, what hospital we use, directions to the house that may be given to the Emergency folks if 911 must be called.  The booklet is to go with her to the hospital, so it includes the names of Mary Ann’s doctors, a current list of medications, her Living Will.

It also includes a description of what to do when Mary Ann gets up to walk, what to do and not do when she begins to fall, what help she needs with personal tasks.  It lists things that are normal for Mary Ann but might concern a Volunteer, dyskinetic (involuntary) movements, dizziness, confusion. 

We talk through with new Volunteers what to expect.  We assure them that we understand that none of us can control what happens, to help relieve them of concern that they will be held responsible if she falls and hurts herself.

Finally, we have obtained an umbrella insurance policy to help provide for the contingency that someone might be hurt trying to help Mary Ann.  With so many people in and out of the house, there is a vulnerability that comes. 

After the fall, we took Mary Ann to the Emergency Room.  Even though she had fallen flat on her face on a ceramic tile floor from (apparently) a standing up position, she broke nothing, not even her nose.  It took hours each of two days to get the nosebleed to stop.  When the packing came out a few days later, to our surprise, it did not start bleeding again.  She did not have a skull fracture but was pretty confused for a few days.  We did need to get a new pair of glasses.  Mary Ann seems to be made of iron.  She has fallen multiple times, sometimes more than once in a day, but has broken no bones. 

Safety is an issue whether there are Volunteers or not.  Our job as Caregivers is to do what we can to create as safe an environment as is reasonable given the place in which we live, the resources we have and our Loved One’s need for some independence.  Having done that, it is time to let go of the constant terror we could choose to embrace.  Life is too short to waste living in fear.  Live safely, but live. 

What are some things you do to make your Loved One as safe as possible?  Do you use Volunteers?  Where do you find them?  How do you prepare them?  How is it going?

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.