April 8, 2009

Caregivers: Shall we Travel?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , |
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I am writing this post at my Daughter and Son-in-Law’s computer after driving for eleven hours yesterday to get here.  The word “disincentive” has come to be a regular in my vocabulary.  The disincentives to traveling with someone who needs lots of care are legion.

There is a powerful ambivalence that comes as the trip nears.  Memories of struggles on past trips loom.  There was the trip to that Elderhostel held in Tucson, Arizona one winter.  We flew since the drive would have been a couple of long days.  In my mind, the air quality on the plane brought it on.  Four days later I called the children to fly in for what was thought could be Mary Ann’s last night.  She recovered.  Nonetheless, that memory brings to mind the distinct possibility of having problems away from home.   A strange and unfamiliar hospital, new doctors, the communication of a complex of illnesses about which records lie a thousand miles away, the usual support system unavailable all compound the stress felt by the Caregiver.

Memories of driving for miles trying to find a one-holer, a single-user bathroom, or searching for someone willing to guard the multi-stall bathroom while the two of you spend what seems like an eternity in the restroom, those memories are firmly entrenched and surface immediately at the first thought of heading off on another trip.

I think most of us who are full time Caregivers have worked hard at developing routines that help us anticipate and deal with the many daily struggles that come with the territory.  We have found what works.  We have the tools handy in the places we will need them.  We know to whom to turn for what.  When we are in another place, routines no longer in place, everything is harder.  What we would have taken in stride at home becomes a major challenge.  There is added stress due to the increased vigilance demanded by a new environment filled with the unexpected.

The destination of our travel may not be user friendly for those with physical limitations.  If we are staying in a home with family or friends, the chances are there will not be all the accommodations we have provided at home as we have worked at making it more accessible over the years.  As Caregivers we have all come to realize how easily a few steps or a curb or a gravel drive or cramped quarters in a bathroom or a low toilet stool or any number of seemingly minor challenges can become major barriers.

Eating out in public places during the travel and, perhaps, at the destination is not a time to relax and converse and rest from the trip.  Finding a spot to park, getting the wheel chair out and through the doors of what is usually an air lock arrangement, two sets of doors with a small space in between sets the tone for the mealtime.  Figuring out what to order, dealing with the logistics of finding a table and getting the food to it in a fast food restaurant are more difficult that would be imagined.   Then, unfortunately, I get embarrassed when the food as it is being eaten ends up in a mess on the table, lap and floor.  I consider it my job to leave the table as I found it.

The disincentives to travel are legion.  The challenge is to put the disincentives in perspective when deciding whether or not to travel.  Mary Ann is less conscious of the disincentives.   She does not embarrass as easily as I do.  She seems less conscious of the difficulties we encounter.  I assume that part of the reason for that is that I am the one who does the physical tasks associated with getting her needs met.

There are incentives to traveling.  This trip brings us to two of our Granddaughters.  That trumps pretty much all of the disincentives for traveling here.  Traveling gets us out of those same few rooms in which we are spending our whole lives.   Traveling gets us away from one more Law and Order episode, Spaghetti Western, session of self-help on Oprah.  Traveling gets us in contact with real, live, human beings, able to converse with us.  Traveling exposes us to the beauty that surrounds us but is out of sight because it is on the other side of the houses surrounding ours.

We have worked at determining where the best bathrooms (single user) are when traveling.  They include Subways, Taco Bells, newer Casey’s General Stores, smaller convenience stores, Arbys,  BP station (if there is not an attached fast food restaurant).  Those places don’t always have a bathroom suited to our needs, but often do.  We have learned what foods are more and less challenging to handle.  We have an old catalog case filled with first aid supplies, straws, wipes, anything we can think of that we might need, but might not be readily available.  We grab that case every time we hit the road for an overnight.

You remember that often repeated quote attributed to someone who is looking back on life regretting not what he did but rather what he did not do.  There is only so much time left for any of us.  With a chronic illness in the family, mortality is clear.  Whatever we will do yet in our lives needs to be done now if it will be done at all.

Of course we need not to tempt fate and be foolish about what we choose to do.   If quality of life actually is more important that quantity, we do need to stretch the limits a bit and take the risk on traveling.

Shall we travel?  For Caregivers, it is far easier not to.  Logically speaking, the disincentives may seem to outweigh the incentives.  The challenge is to put in healthy perspective both disincentives and incentives.  Weigh them carefully and remember, we don’t have forever, we have now.

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.

 

March 29, 2009

Caregivers’, Carereceivers’, Volunteers’ Safety Issues

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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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.

 

March 16, 2009

Caregivers in Waste Management

Posted by PeterT under Daily Challenges, Practical Tools for Coping | Tags: , , , , , , , , , , , |
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In the Caregiving business, it becomes evident very quickly, that our lives (all of us for that matter) revolve around activities of our alimentary canal — input and output.  It is how we survive.  There is input that brings with it the raw material from which is mined fuel for burning in cells of one sort or another so that we can simply stay alive — be who we are, do whatever it is we do.  Then there is what is left after the fuel has been mined.  In Picher, Oklahoma, there are toxic Chat Piles, a Superfund site destined for cleanup.  The output must be dealt with.  It is called Waste Management. 

For humans the management of input and output is primary parent activity.  Those tiny people after they pop out have clear goals in life: eat, sleep, fill their pants and cry (or coo) to manipulate the big people in their homes to manage their input and output needs. 

As adults, we often collaborate on the input.  Someone or both provide the resources for purchasing the food to be prepared for consumption.  There are any number of options for getting the food ready, maybe one does the grilling outside and the other deals with the range and oven.   For the most part, we do our own personal waste management. 

When Chronic illness joins the family, not only does full responsibility for input become the responsibility of the Caregiver, but sometimes output, waste management, becomes the full responsibility of the Caregiver. 

At the risk of becoming indelicate (there is nothing delicate about waste management), I now am in charge of output in our household.  Understand that “in charge” does not connote control of when, where and how much, just dealing with it when it does come. 

There are certain rules provided on the training CD.  One is that there will be multiple expulsions of wheat colored liquid during the night.  Those events demand help from the one in charge of waste management, so that what is expelled ends up in the bedside commode (Medicare will provide that tool).  By the way, the color is important.  Too much color (dark amber) suggests dehydration and the need for more liquid input.  Red means it is time to call the doctor. 

The rules say that at least one of those trips to the commode will happen during  the Caregiver’s deepest sleep, that deep sleep we are told must not be interrupted if we are to stay healthy and functional.   Some nights there are two or three trips, other nights many more.  It is no wonder that sometimes Caregivers are not always sharp and bubbly and upbeat about how things are going.  Anyone who tells a full time Caregiver to buck up and stop whining, other people have it worse, any such person may be harmed physically — at the worst it would be categorized as justifiable homicide. 

My task is simpler than those who care for male Loved Ones.  It is far easier to contain liquid waste that drops into the commode than that for which aim is more of a challenge. 

Then there is the management of solid waste.  Those who have Parkinson’s or some other chronic illnesses may no longer have the dexterity to reach the place most in need of being reached when dealing with output.  That is where the one in charge of Waste Management springs into action.  (That just sounded silly, but please bear with me.  I am trying to say all this in a way that doesn’t gross anyone out or embarrass the ones who to their horror are in need of such help).

The rules of solid waste management are these:  it comes when it comes, and often without warning.  Almost without fail, it comes in the middle of a meal.  I suspect I can move that transfer chair (wheel chair with small wheels for indoor use) from zero to thirty-five (the indoor speed limit at our house) in a matter of seconds — pants down and seated measured in fractions of a second.  My motivation?  Need I ask?  As the one in charge of waste management, it is my responsibility no matter where it lands.  By the way, it has come to be so, that performing my   duties does not impact my ability to finish eating the meal.  Sometimes I wish it would — every time I step on those silly scales at the doctors’ offices, the ones calibrated purposely to publicly humiliate anyone who stands on them. 

The rules of solid waste production also include emergency needs during trips out to social gatherings, grocery stores, restaurants, church or synagogue or mosque or society meetings.  It happened again tonight.  Waste Management has gender implications.  For those of us whose Loved One is the other gender, there are very unsettling complexities to fulfilling the role of chief of output. 

I dread it, just dread it.  No matter how understanding people are, a busy women’s restroom with multiple stalls is not a welcoming place for a man.  When she needs to go, she needs to go.  I have learned to seek out one-holers –  men’s and women’s restrooms that have one stool and a door that can be locked behind us.  Most Casey’s General Stores, some Arby’s, often Subway sandwich shops, some Taco Bell’s, some Pizza Huts, many small convenience stores have one-holers.  Of course the greatest invention in the history of humanity is the family bathroom.  Some newer rest areas, airports, Walmarts have them.  Gratefully, there is almost always someone around who can be enlisted to guard the door while we are both in the ladies room.  Then there was the time we entered a large but quiet ladies room, only to discover that while we were in there, a busload of thirty-one Second Graders came and were standing outside, their little legs crossed, while we had a substantial need to deal with on the inside.   

I suspect that other Caregivers share with me a quiet terror that lies in the recesses of our minds all the time, a fear fueled by horrible memories of past experiences with it — the dreaded diarrhea.  How many times have we changed bedding, maybe thrown away a mattress we just couldn’t clean, tossed clothing or sheets because we couldn’t face again the task of trying to get the stains out, scrubbed bathroom floors and walls, cleaned carpeted areas. 

I have to say something now that will probably seem sort of pollyanna in its tone.  I don’t like the job of waste management.  Sometimes it feels as it the smells will never leave my nostrils.  Sometimes it seems as if we cannot have much of a life as long as we are ruled by providing input and manageing output.  For me, it has come to be part of my job.  It is what I do.  It is neither good nor bad.  It just is.  When waste needs to be managed, it gets managed.  We use what we call pads (absorbant paper underwear), baby wipes, chuks (absorbant, plastic lined fold out sheets) for under the bottom sheet on the bed.  We put fitted plastic sheets under the mattress pad.  We have a bedside commode right there so that few steps are needed at night.  There are pads and babywipes in her purse.  We take just the right balance of over the counter Miralax and Senna to keep the activity somewhere between constipation and diarrhea. 

We do it for our babies, we do it for the people we love who can no longer do it for themselves.  It is the way we express the love we declare with our words.  However stupid it sounds to say it, I find Waste Management to be a nobel profession.  It is not for sissies.  When the job has been the most difficult and frustrating and messy, afterward (not usually during) I feel as if I have just been engaged in the game of life, living it to the full, not watching it go by from the sidelines.  I am somebody, doing something that actually makes a difference for someone I love.  By the way, talk about heros — thank a CNA (Certified Nursing Assistant) who serves in Waste Management at hospitals and nursing homes, next time you see one.   

There!  I did it!  I knew this had to be written.  I just didn’t know how to do it and when to do it.  Caregivers in Waste Management, maybe we could form a Union — however, no striking allowed.

 

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