March 2009


Tonight I am anticipating a three day retreat from Caregiving.  It will begin as soon as the car is loaded and on the road in the morning.  I will travel between five and six hours on the Interstate to get to a place that has provided respite and renewal to me off and on for almost twenty years.  

I will tell you some of things I look for in a Retreat, some of the things I do, but what is more important is for each of you who serves as a Caregiver to find a place that renews your spirit.   What provides you with respite and renewal is likely to be much different from what does it for me.

The place I will go is called St. Francis of the Woods Spiritual Renewal Center.  To go there requires no particular Spirituality.   There I will find complete solitude.  The cottages are very comfortable and very few.  That there are very few cottages is the reason for my expectation of solitude.  There will be no agenda to follow, no meal times to honor.  It will be in complete contrast to the Caregiving Role that is done entirely in response to someone else’s needs. 

There is a beautiful, ornate, Orthodox chapel there for those who appreciate that environment.  There is a library filled with books intended for those seeking renewal.  St. Francis includes a five hundred acre working farm.  There are pastures and woods, a chicken house filled with clucking hens and crowing roosters.  Fresh eggs can be purchased — the honor system – get a dozen from the fridge and leave the money in the basket.  There are paths carved out in the woods, with the occasional bench.  There are areas with no paths, filled with wildlife to be surprised as you come into sight.  There is a small remote field a decent hike’s distance across a trickle of a creek, maybe a mile and a half’s walk away from any of the cottages.  It is surrounded by woods with only one path for a tractor to reach it for any planting or cutting of hay.  That is the spot that touches my spirit and renews me. 

The drive there is a vital part of the experience.  The music CD’s are carefully chosen to help me transition from activities and attitudes that fill my days at home (and at work when I was still working full time).  That time allows me to be prepared for the hoped for renewal time on the Retreat.   The return trip is often a powerful time, since, with an uncluttered and rested mind, solutions to problems often emerge, decisions can be made with clarity.  For me,  a two night stay with travel there on the first day and travel back on the third day is the most effective pattern for renewal.

On the Retreat itself I will carry with me a couple of books that provide me with the spiritual tools I need to stay grounded and grow in learning how to quiet myself so that I am receptive to renewal.  I will bring a couple of books on Quantum Physics, since, while I know very little and struggle to understand them, I find them to enlarge my perspective in a way that excites my spirit.   I will take with me some good binoculars and a spotting scope given to me by my Son.  I will engage to the fullest extent my senses will allow, every dimension of that holy space. 

I will do some journaling periodically as I sit on the three legged stool that I strap to my backpack, or one of the benches if it happens to be in the right place at the right time.  The journaling tends to take me to a place of perspective on my life’s journey.  When I am on retreat, I have a chance to move out of reactive mode.   I can rediscover my center of being as a single individual in a magnificently huge universe.  I can look from a distance at my relationship with Mary Ann, with the caregiving that is a part of our relationship.  Without fail, my love and commitment to her has been renewed on those retreats, the spiritual strength that sustains me has been renewed and enlarged. 

Self-care is not simply an optional task among the many that come with life’s challenges, especially for those charged with the care of another human being.  Self-care is what allows the possibility of being of any use to anyone else, especially the One for whom you care. 

I suspect the question that first comes to mind for many Caregivers is how on earth it is possible to find time to go on a retreat.  Who will care for my Loved One while I am gone?   How will I afford it?  It will only happen if you accept that your self-care has priority.  If something is needed badly enough, we find a way to do it.  We need to eat.   We find a way to do it. 

I went on these retreats when I was working full time and caring for Mary Ann full time when not away from the house at work.  There were some Volunteers who developed the confidence to be a part of the crew who stayed with her when I was gone.  Our daughter and her family chose to move to town to help us out for a couple of years.  During that time, she took one or both of the nights I was gone.  My daughter and her family have driven ten hours to visit this week, encouraging me to take this three day Retreat during part of their stay.

There  are some local organizations that for a charge (one charges $150) will come overnight for a twelve hour shift.  There is a local facility that will provide residential care for an overnight, again, for a charge.  When I began going to St. Francis, the suggested donation was $6.00 per night.  Now it is up to almost half the cost of a night in a motel — a bargain to say the least. 

Your task is to determine what it is that would allow you to disengage for a time from the stream of demands coming your way, what activity would be renewing to you.  It is not impossible to do.  It may is terribly difficult, but it will never happen unless  you decide it needs to happen, it is worth doing.  Do it once or twice and you will understand why it needs to happen.  Take each obstacle to doing whatever renewal activity would be meaningful one at a time.  Do not allow one of the obstacles to sabotage the whole idea.  Reframe the nature of the retreat if need be.  That may mean finding a B&B an hour away instead, or a friend’s vacation home, or the farm still owned by a family member. 

Self-care is not one option among many for a Caregiver.  It is precisely what is needed to do the very task you are called to do.  Love the One for whom you are caring enough to take care of yourself.

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.

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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.

I have heard it hundreds of times when listening to folks who want to help when someone’s spouse has died, “Call me if you need anything.”   I have said it.  Sometimes it is said because the person offering just doesn’t know what to do to help. They probably already have brought food to the house. Sometimes it is said because the person saying it knows there will be a time later when the first wave of attention has subsided that the needs will come. Sometimes it is said just to have something to say, and the one saying it has no expectation that he/she will be called.

My experience has been that people do want to help when there has been a death or when chronic illness has entered the life of a friend. First of all, people genuinely don’t know what to do. They don’t know what to offer to do and when to offer it. They really do want you to call and ask.

There are some problems with the offer and even the intention.  First of all, you may not know what to suggest, what you need.  You may have very little idea what would be helpful to you, until whatever it is actually becomes an identifiable problem.  It is hard to know what people are actually willing and able to do.  It is hard to know when to ask them.  When will they have time to do what you have finally discovered would be helpful? 

Assuming you have decided what you need done, how do you muster the courage to make the phone call?   If you make the call and ask, what if they really don’t want to do it, or need not to do it, but they say yes because they don’t want to hurt your feelings?  What if they say no, for whatever reason?  Do you dare call them again?  They will tell you to call again, but how long should you wait?  You certainly don’t want to hear a “no” again.  It doesn’t take too many times calling for help before you begin to feel as if you are begging, manipulating, wearing out your welcome.  The last thing you want is for your friends to begin to dread your calls. 

Then, of course, you should be able to handle it all.  You are a capable person.  Why should you ask someone else to do something  you are perfectly able to do?  If you ask people to help you will feel obligated to them.  You will owe them something in return.  You have enough to do just taking care of your Loved One, the house (inside and outside), the car, your job, making meals, doing wash — the list is endless.  How will you have time to return the favor or at least adequately thank the person, compensating them with the efforts you put into those thanks?

Let’s begin with the reason for letting people help.  The truth is, the real truth, people need to help other people.  We are wired to live in community.  That means people need to help each other in some way.  Whether you understand humans to be intentionally created by a Someone, or the product of accidents of a natural process, our DNA leads us to work together.  That is how we have come to accomplish so much as a species.  To be truly human, we need to do part of a larger task so that we all can survive.  People need to help.  How can they help if no one is willing to let them??  To allow someone to help you is to allow them to grow and flourish and find joy and meaning and satisfaction as the truly human beings they are constructed to be.  Your need opens possibilities in the lives of others, your friends.  Care enough about them to let them help. 

That sounds reasonable (at least to me).  The question is, how do we ask, given all the reasons not to call?  In our years of dealing with Parkinson’s and finally coming to the point of simply not being able to do this on our own, we have come upon a way to ask for help, a way that avoids almost all of the disincentives to calling people for help. 

It started this way.  One winter, during one of the dramatic downward plunges on our roller coaster ride, Mary Ann could no longer be left alone.  I was working more than sixty hours a week at a terribly demanding job (technically I was on call twenty-four hours a day, seven days a week – seldom but sometimes called out during the night).  I was too young to retire and survive financially.  We couldn’t afford the fifteen to twenty dollars an hour for paid caregivers.  Multiply that amount by sixty hours per week and see what it would have cost. 

I was serving as the Pastor of a large and active congregation.  Our Parish Nurse immediately got on the phone and called some people for us, asking if they would stay with Mary Ann.  They did!!!  Margaret phoned. They could say yes or no to her with no concern for hurting our feelings.  They could decide for themselves if that was something they had the time and interest in doing.  When finally Margaret could no longer serve all the other folks in need in the congregation and make all those contacts, Carol took over.  She seemed to enjoy making the calls and talking with people and making such a difference in our lives — and serving the congregation in an important way.

There were over sixty-five Volunteers at one time in these last seven or eight years.  When Carol’s health made it impossible for her to continue that full time task, it was the time that our Daughter, Lisa, and her family moved here to help us out.  Many Volunteers were still needed. Mary and Edie were added to the coordinators doing the calling.  To this day I have no idea how Carol managed that task by heself all those years. 

Here is where technology entered the picture.  Under Helpful Caregiving Resources on the right side of the page of this screen there is a website that has made the impossible possible.  It is www.lotsahelpinghands.com.  It is a free website that allows coordinator(s) to schedule people to fill needs of all sorts.  We have used it to schedule Volunteers to stay with Mary Ann, people to give rides, provide food.  Any tasks can be scheduled.  The site sends out Email reminders periodically up to the day before the person’s scheduled task.  For those who do not do the computer, the coordinator makes phone contacts and enters the information.  People can go online and schedule themselves in a slot that has not been filled.   Check it out.  It is a powerful, very well constructed site, and it is free!!

What can people do to help?  Someone who wants to do something from home can do the phoning and scheduling.  Some people are willing to help by driving your Loved One to or from something when you are not available to do so.  If you need a second set of hands for that trip in the car, someone may be willing to help.  We have some folks on a list who will come immediately if they are available when Mary Ann has fallen and the Volunteer with her is not able to get her up.   There are people who will stay overnight with her if I need a night’s rest.  There are people who have come and picked up clothes to iron for us.  There are folks willing to shop or run errands for us if we can’t get out.  Of course there are many who are happy to bring some food over.   Develop a list of ways people can help.  Maybe you could do it all — but I doubt it — not for long.  Ultimately, insisting on doing it all by yourself will remove your ability to do any of the Caregiving. 

Caregiver, “What can I do to help?”  Have an answer ready, many answers.  Have a way for them to help by doing what they are able to do,  what they want to do, when they can do it.  You are only human.  You cannot do it all.  They need the opportunity to help, not just to be only human but to be truly human. 

Think about it.  What help do you need?  What can people do to make a difference for good in your life?

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 back earlier today from doing something that was a part of my job before I retired.  I remembered.  I remembered what it is like to have to get someplace and do something required by a paying job, while at the same time having a more important responsibility tugging against that job, responding to the needs of the one for whom  you are caring.  The chances are the income from that work is necessary for putting food on the table and keeping a roof overhead.  You are likely to be the sole sustainer of the environment in which you do the Caregiving. 

What can complicate it even more for those who are working full time and doing full time care for a Loved One, is, should it be so, that job being something deeply satisfying and fulfilling, something that gives meaning and purpose to your days, something for which there is not only the tangible affirmation of being paid for it, but sincere words of affirmation from those being served through your work. 

I remembered.  I remember the feelings of being so tired that it hurt, it just hurt.  I remember seeing no way to survive the next week or day or hour or minute.  I remember the panic of knowing there was an absolutely necessary commitment being threatened by a last minute major need in the life of the one loved deeply who needs you a that same moment.  I remember heading off for a day so full of intensely demanding activities as to be more that could be handled when rested — that day being faced after the third night of very little, sometimes no sleep.

Help!!  Some of you who happen upon this post are at your wit’s end, the end of your strength and stamina.  I have read emails from folks who work and care for someone far into Lewy Body Dementia.  I have known well a number of folks who have cared for someone with Alzheimer’s Dementia.  I have walked alongside many who have cared for someone dying of one or another form of Cancer, ALS.  Most of them have had to somehow manage to maintain a livelihood, a career, a job of some sort, while their heart and mind and attention were dominated by the needs of the one they left when they went off to work each day.

When I was working full time and doing full time care when not at work, sometimes people would say, “I don’t know how you do it!”   My answer was usually something like, “It is just what I do.  Everybody has something to deal with.  This is just our particular challenge.”  Now that I am retired and doing full time Caregiving only, I don’t know how I worked full time and cared for Mary Ann when I was at home. 

I have no simple solutions to the problem of balancing work and caregiving in a way that keeps the Caregiver able to function at both tasks.  As I reflect on those years, there are some things I remember doing to keep from being reduced to a heap of quivering flesh. 

I started with having a career that is deeply fulfilling.  It was stimulating, creative, energizing, brought me into some of the most intimate moments in people’s lives.  Finding purpose in work helps the work become a tool for survival.  Even if the job sometimes seems to you to be such a small part of some institutional activity as to be virtually meaningless, think for a moment.  Of what is your job a part?  Who depends on you doing your part of the whole task?  Finally, there is some reason that you are being paid to do whatever it is you do.  Someone needs the product or service that is the end point, no matter where what you do falls in the process or how tiny a part it may seem to be.   Yes, there may be people in that workplace who seem bent on making your life miserable.  Yes, there may be a culture that diminishes the value of what you do.  Don’t give away the power to decide for you what value you find in what you do.

Lot’s of folks I know bring a healthy lunch with them to work, along with some walking shoes and head out with a friend or two for a mid-day dose of exercise and the concomitant endorphin rush (a legal high).   Sometimes a two minute visit to an online site that has beautiful pictures and music can provide a moment’s retreat and help provide some balance in the day.  Exercises at the chair, or walking the stairs instead of using the elevator, or parking a long way from the door can provide some help in managing the impossible load. 

When returning to the house from work, the needs for my help were always immediate.  There was never any decompression time, transitional time, a moment to catch a breath before the accumulated needs had to be fulfilled.  I have heard some say that they arranged for whoever had been staying with their Loved One (whether paid or volunteer) to stay an additional length of time to give them a change to get their bearings.  That never worked at our house.   There was always an expectation that I would give immediate attention. 

While at home, having a list in mind (or written down) of things that take very little time to do, whether household tasks or activities that provide a moment’s break or some activity that includes a bit of renewal or personal satisfaction can allow a touch of balance.  Instead of wasting precious time immersed in frustration and feelings of powerlessness, be very intentional about creating and taking moments for yourself.  In  my case those moments would be used immersed in my own thoughts, reframing what I had just been doing in a way that allowed a sense of accmoplishment or purpose.  I sought moments of distraction engaging the elements of the day, sun, rain, clouds, birds, flowers, trees, fresh air, the feel of the breeze.   A trip to my favorite spot for soaking in a Kansas view can be done in twenty minutes including travel time.   Two night, three day, trips to the Spiritual Renewal center in Oklahoma happened twice a year when I was working.  The time in the car was retreat time as CD’s of my favorite music calmed my spirit. 

While those moments of reflection, of engaging my senses worked best for me, what has worked for you?  The challenge is to find things that can be done in the moments in between caregiving tasks.  How are you managing to survive both working and caregiving?  How do you keep from unraveling completely?

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.

Mary Ann and I both had appointments with the Cardiologist today.  We knew him as a parishioner before he became our Cardiologist.  We like him very much.  He is good.  Very good.  We are grateful that he is good since Mary Ann has so many problems associated with her heart and its functioning.  He is an important member of the team.  It is a team.  The team includes the Cardiologist, the Parkinson’s Clinic Neurologist, the local General Neurologist, the Gastroenterologist, the Primary Care Physician (General Practitioner),  the Nephrologist, the Ear, Nose and Throat specialist, the Dermatologist (who has removed her four Basal Cell skin Cancers), the Endocrinologist, her Physical Therapist, Speech Therapist, Occupational Therapist, Clinical Psychologist, two or three hospitalists, along with numerous medical technicians and nurses of all sorts, some seen only once, some who are practically like family.  We have great medical care.

Each of these people is very good at what he/she does.  Each has specialized in a certain body system or body part.   The Primary Care Physician has the largest chart for Mary Ann, but there is no way he can keep up with all the tests and treatments and medications with so many different people making independent decisions about what to do to treat the problem in their area of expertise.

Here is the obvious problem in this marvelous Team effort.  Mary Ann is actually a single living being who is not simply a gathering of independent systems and body parts.  She is a whole somebody.   Every system is connected to every other system, making up a single functioning human someone. 

Any of you who has been a primary Caregiver for a Loved One with Parkinson’s or any other chronic illness understands very well nature of the your role as a Volunteer Medical professional.  All those people listed above know more than I do about their area of specialty.  I know Mary Ann better than any of them.  I pick her up when she faints or loses her balance.  I know when those problems come in relationship to how much medicine she has taken and when.  I have discovered that when the recommended treatment for her heart is put in place, her Parkinson’s is unmanagable.  I know that when she has some major intestinal activity there is likely to be some fainting and maybe a time of mental confusion.  I know that if there will be a test done that demands her lying still, we need to skip the dose of her main Parkinson’s Med (brand name Sinamet) or the test will almost be impossible to accomplish, because of the dyskinetic movement that is now a side effect of that medication.  I know about how long we have to get from one place to another before she is likely to faint.  

One of the somewhat unique characteristics of Parkinson’s is that there is not much that is consistent and predictable. Medicine may work or may not work on a given day or at a given dosing time.  She may be able to walk long distances without fainting or faint sitting in a chair or immediately on getting up.  She may be up a dozen times on the commode during the night, or just a couple of times.  She may be wobbly or steady, sleepy or restless.  Even the best specialist in the field knows that one regimen of meds may work for one person but not another. 

Your Medical Degree is in the Mail!  You as the Caregiver actually serve as the Primary Care Medical Practitioner.  You need to know what medicine is being given for what symptom(s) and what impact it will have on the others.  The clearest example of the problem of competing treatments came for us when the treatment for Mary Ann’s Congestive Heart Failure and Cardiac Heart Disease stood in direct opposition to the treatment for her Parkinson’s.  The diuretics and low salt diet lowered her blood pressure.   The Parkinson’s meds lowered her blood pressure also, and the progression of the Parkinson’s compromised her body’s ability to adjust quickly enough to keep blood pressure high enough to stand up and remain conscious. 

Let me put it this way.  One doctor said, no pizza and Pepsi, the other one said, yes, pizza and Pepsi.  One treatment was to keep from retaining fluids, making the heart work harder, the other treatment was to keep enough fluids in her body to keep her blood pressure from dropping suddenly.  At one point I inferred from what the Cardiologist that the side effects (the dyskinetic movements) of her main Parkinson’s meds was threatening her heart’s health.  We stopped the Parkinson’s Meds and she turned to stone. 

Caregivers are advocates for the quality of life of their chronically ill partner.  In our case, the doctors we regularly use now understand the narrow margin of functionality within which we live. 

I wonder how many of you who are primary Caregivers have taken your Loved One to the doctor, only to be ignored by the staff and maybe even the doctor, treated as an annoyance who should keep your questions to yourself.  I do not have enough fingers and toes to count the times, either in doctor’ offices or hospital rooms that I needed to explain to the medical staff some of the very basic dimensions of Parkinson’s, the way meds should be given and what the side effects will be. 

Caregivers are the Primary Medical Technicians for their Loved Ones.  Don’t get angry about it, just do it.  Learn everything you can about the disease.  Go to workshops and support groups, whether face to face or online.  Write down the questions and demand answers in terms that you can understand.  Ask what every medicine is supposed to do, what its side effects are and how it will impact other problems and the medicines being taken for them.  Advocate for the best quality of life you can obtain, even if you run into some attitude along the way. 

Like it or not,  you are the Team Leader.  No,  you are not a doctor, you do not have the breadth of knowledge and training, but you know your Loved One better than anyone else.  You are an expert on his or her disease and its impact on your lives.  You see the whole person, not just the separate systems and body parts. 

Our experience has been that any time we have encountered a medical professional who is good, very good, who knows the area well, he/she has always been open and inclusive, listened well and explained well.  Seek them out.  They will help you find the best quality possible for and your Loved One in your time together, however long that may be.

If you have a story to tell from your experiences with medical professionals, tell that story here.  It might help someone who happens to find her/his way to this site.

By the way, today’s news from the Cardiologist was good news.   There has been no measurable deterioration, nothing new in the last six months.   For the moment, we get to keep our current normal.  We can live with that!

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.  Comments are appreciated.

Let me begin by telling you that I am not feeling angry at the moment.  This is not a chance for me to vent about my frustrations.  What I want to do is say what is obvious to those of us in Caregiving roles — as well as those receiving the care.  We get angry!

When we get angry we have to figure out what to do with those angry feelings.  While I would like it to be so, I am not always calm and rational and thoughtful and caring and sweet and loving — I had better stop before I lose my supper.  Mary Ann and I are not always sweet to each other.  Gratefully, neither of us expresses our anger physically.   We don’t call each other nasty names.   We do get angry. 

We have to figure out what to do with the anger so that it does not alienate us from one another or eat holes in our insides.  We don’t happen to be sweet talkers.  I appreciate those for whom sweet words come easily — when those words are genuine.  We are not cutesy-pie or sweet-cheeks or honey bunny sort of folks.  We didn’t use baby talk with our children — maybe a little with our Grandchildren, but that’s different!  We don’t use sweet talk with one another. 

Actually, I like that we say what we want to say to each other with words that sound genuine.  There is a trust that emerges that we are being straight with each other.  We try to be thoughtful in what we say without using words that sound like empty flattery.  We can both be pretty grumpy.  That is just the way we really are, sometimes grumpy, sometimes loving and kind and happy and content. 

When anger comes there are some elements of dealing with that anger that are unique to a caregiving and receiving relationship.  It just isn’t fair to express anger at someone who is sick, who has been battling Parkinson’s Disease for twenty-two years, who has had stolen from her every ability that brought her creative satisfaction, someone who depends on you for almost everything.   But where then can it go?  How can it be expressed.

Then, how can Mary Ann express her anger at me when moments later she has to depend on me to get her a sip of water or more importantly a dish of ice cream?  How can she risk alienating the one person who is there for her pretty much twenty-four hours a day?  Where then can the anger go, how can it be expressed.

If you haven’t discovered this for yourself, let me tell you something important about long and committed relationships.  They contain within them the capacity to be angry with one another, be grumpy, express it, and not threaten the relationship.   We trust each other enough to admit and express our anger. 

There are, of course, some rules.  No hitting!!! No name calling.  No damage to the furniture, doors or walls.  There may be an enthusiastic shutting of a door.  There may even be some yelling.  My children and those I taught in Confirmation Classes can testify that this little body can produce sounds audible from quite a distance, startling when heard at close range.   

There is an element in the expression of anger in a relationship that is not always appreciated.  Expressing anger appropriately in a relationship can strengthen it.  The operative word is “appropriately.”  Admitting that you are angry about something creates a vulnerability.  I can remember in our early years of marriage, Mary Ann once  saying to me, “I just wish you would get angry with me.”  By the way, she has lived to regret ever saying that. 

In her own way, she was asking me to be honest with her and reveal myself more openly, be more fully present with her.  She was asking me to trust her with my anger, trust her with what lay in my insides. 

Here is where that insight relates to our relationship as Caregiver/Receiver.  Were I to refuse to let her see any of my anger, it would signal to her that I thought her to be too sick, to debilitated to handle an honest relationship.  If I were to be sweet and nice and never grumpy with her, she would suspect that I had somehow lost respect for her strength. 

If Mary Ann were to become docile and compliant, never grumpy, always appreciating whatever I said or did, eating leftovers without complaint, never becoming impatient with me, it would signal to me the loss of someone who has been a force to be reckoned with, a strong presence, the person I have loved for all these years. 

We are not just Caregiver and Carereceiver, we are husband and wife!

What helps in managing the anger that comes is reflecting on it long enough (after the first reactive moments) to determine what it is that is the actual cause of the anger.  More often than not, what we are actually angry at is the insidious nature of Parkinson’s.  The ups and downs, the unpredictability, the inability to make plans and keep them, the relentless direction of this rollercoaster ride, combine to create frustrations that bubble up when some evidence of Parkinson’s presence pops up (sometimes as suddenly as Jack does when the little door of the box opens). 

I seem to have little ability to change this pattern, and I am frustrated by that inability.  When Mary Ann falls, which can be multiple times in a day, I get angry and grumpy about whatever it is that put her in the position of falling.  When I reflect on those reactive feelings, it becomes apparent to me what is actually happening.  I am scared.  We have been to the emergency room with blood that refuses to coagulate.  I know that head injuries are what most often finally take folks with Parkinson’s.  I am upset that I didn’t anticipate it and figure out how to prevent it.  I am frustrated that the very same medications that keep her able to function throw her into dyskinetic movements that compromise her balance, that the disease process combined with side effects of meds can cause her blood pressure to lower resulting in fainting.  I am angry that she doesn’t think about all that and avoid situations that make falling likely.  I am angry that the disease has slowed the thinking process making that kind of rational behavior difficult to maintain.  I am angry that she has always had a stubborn streak that, while it is keeping her alive, it is at the same time driving me crazy.   And then she wonders why I am angry at her when she falls since she isn’t the one who chose the Parkinson’s and brought all the challenges into our lives.  She isn’t doing it on purpose.

What about anger?  Well, admit it, name it, express it in ways that hurt no one, then think about it.  Use the energy it produces to find ways to deal with the problems that trigger it.  Don’t waste the anger.  Use it constructively.   Don’t let the Parkinson’s, the chronic illness, rule your feelings, your personal and emotional well-being.   Respect each other enough to be open and honest, vulnerable to one another.     Allow the chronic illness to become only an objective part of the landscape in which you live and grow and love. 

Yes, I would like to hear what you do with your anger.  I would like to hear what tools you use to manage it, release it, diminish its power.

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.  Comments are appreciated.

When Mary Ann was diagnosed with Parkinson’s Disease, our daughter was a Senior in High School and our Son was in the Eighth Grade at a school in which that was the last year.  I had gone on ahead in February to begin a new job in a city about a six hour drive away.  Mary Ann and the kids stayed at home to finish the school year while I lived in the new city without them.

It was a phone call.  “The doctor says that I have Parkinson’s Disease.”  In that moment  our lives ended as they had been and a new life began.  It has been a time of discovery for Lisa and Micah.  All of us needed to incorporate this new reality into our lives in different ways, as bits and pieces of understanding of its impact revealed themselves to each of us.  Our experiences have been completely different.  I could no more describe the feelings that Lisa and Micah have had than I could Mary Ann’s feelings.  They alone know the journey they have been on.  I know only what I have seen and heard when they were still at home, and what I have seen and heard of them in the years from then until now.  They are thirty-six and thirty-nine now – both married and along with very well-chosen spouses, raising our granddaughters. 

For you whose family has come to know the presence of chronic illness, make no assumptions about how that presence is impacting anyone else in your family, especially the kids.  It is tempting to project our adult awareness of all the implications of the disease on to our children.   It is tempting to try to insulate them from what we know of the truth.  It is tempting to lean on them and use them for support that they are neither ready nor able to give.  It is tempting to loosen boundaries on their behavior to compensate for the pain their parent’s chronic illness brings into their lives.  It is tempting to allow the chronic illness to draw attention away from them and their needs as they grow. 

Let’s just admit the simple truth.  Parkinson’s joined our family.  We didn’t invite it in.  We had nothing to say about it.  It became part of the family.  Two of the choices we had were to pretend it hadn’t moved in, or make it the center of our world.  I suppose we did some of both, each of us in different ratios of pretense and dominance.  One thing we did (I hope this is the way the kids remember it) is to just deal with whatever came as it came.  One side note is that as her Mom’s illness progressed, Lisa’s career choice of nursing home administration emerged.  She has since chosen to move to a very fulfilling job of the full-time parenting of her two young children. 

The Parkinson’s did impact the kids lives.  Again, they alone know how it affected them.  We tried to be honest about what we knew.  We tried to be rational in making choices about how to live most effectively in light of the Parkinson’s presence in our household.  We wanted our children to see that rational behavior helps in the long run.  We certainly did not spend a lot of time wringing our hands and feeling sorry for ourselves as if our lives had been stolen from us. 

Our children have come to be exactly what any reasonable parent could hope for them to be.  They are self-sufficient but able to be vulnerable, to care about others.  They are intelligent and mature.  Their advice is trustworthy.  They are of impeccable character.  They make friends easily and are true to them.  Others are better off for knowing them and will admit it.  While I understand that Mary Ann and I are biased in our assessment of them, I would bet money, real money, that others who have no such bias and who know them would say the same.

How did the Parkinson’s affect who they have become?  I can’t know this, but I think it has added depth of understanding, wisdom, compassion and a concern for others to a degree that might have come at least more slowly otherwise.  Each of them has found a life’s partner who matches their integrity, compassion, wisdom and concern for others. 

Those of us who deal with chronic illness in our families can feel sorry for the burden it places on our children.  I happen to have worked with Youth for eighteen of my forty years at my job.  While I cannot claim to have conducted a properly constructed study of Youth trends, I can say that those I got to know well, those who had the most, who were given the most, who had the easiest road, also had the most trouble finding their way to happy, meaningful, and fulfilling lives. 

What some might conclude to be an obstacle to a healthy childhood and a joyful life, I understand to have brought health and the capacity to experience deep and lasting joy that cannot easily be snuffed out by problems.

I have concrete evidence of the strength of character that has been shaped in our children by Mary Ann’s Parkinson’s.  Two years before I was able to seriously consider retiring to be a full-time Care Partner for Mary Ann, our Son-in-Law said to our daughter, Lisa, “why don’t we move to your Mom and Dad’s town to help them out for a couple of years until your Dad can retire?”  They lived in a city ten hours from here.  They had a two year old and a four year old.  There were no job guarantees here.  They just did it.    I have no idea how we would have done it without them.

Our Son and Daughter-in-Law moved from three hours away to one hour away.  They have never said what role, if any, our situation played in that decision.  But here they are, close by and ready to do anything within their power to help us.  Micah has come and stayed the night with his Mom.  He has done things no Son should be asked to do for his Mother.  He has done them without hesitation or complaint. 

Our love for our children, our purpose as parents to free them to live full and meaningful lives, shaping their own destiny, makes it hard to accept choices they have made to accommodate our needs.  They have taught us that part of who they are, who they have chosen to be, what they want their children to see in them, is their willingness to choose compassion and concern — actions, not just words. 

What about the kids?  The Parkinson’s, a chronic illness, has brought to them more than it has taken from them.   I say that so boldly, not because they have said it to me, but because their lives testify to it. 

My heart aches for so many who have not had the experience we have had, whose children and/or stepchildren have brought them pain beyond description.  How do you manage to survive in spite of their unwillingness to help and for some their willigness to hurt you?  How have your children dealt with the presence of chronic illness in your family?  How have they been hurt; how have they grown?

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.  Comments are appreciated.

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