Daily Challenges

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April 6, 2009

Caregivers: Why so Tired?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , |
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It is about 11:40pm local time as I start this post.  It is not unusual for me to be writing until 1am or 1:30am.  Why on earth don’t I start doing this earlier?  Beyond lack of organization of time and self-discipline, there are some reasons built into the task of Caregiving.

First of all, when someone for whom you are caring cannot take care of personal needs or walk very far without falling, every waking moment is bound to the care and protection of your Carereceiver.  As a Caregiver, you are doubling the number of basic tasks associated with a human’s daily needs.  You are living two lives at the same time. 

One of the lives you are living is, of course, your own.  You know what you want and when you want it.  When living someone else’s life also, just discovering what the wants and needs are takes a great deal of attention and mental energy, especially, if that someone has difficulty vocalizing those wants and need. 

When nature calls the one for whom you are caring, he/she may not hear the call until it is too late to make it to the necessary destination.   Mary Ann can be up and off walking to one place or another in seconds.  Often I discover that she has gotten up and headed off by the sound of the thump when she lands on the floor.  It is exhausting to keep attention so tuned as not to miss those moments of need.  I have heard and believe that mental exercise is far more tiring than physical exertion.  The stamina needed to pay attention to someone else’s every move, every need, every want, uses up endless amounts of the Caretaker’s reserves.

One of the consequences of the constancy of the needs is the inability to find time to concentrate on a task that needs more than a few minutes to do.  Writing a post for this Blog cannot happen while Mary Ann is up and moving about.  My time belongs to her all the time she is awake and some of the time she is sleeping.  I suspect that the same is so for most Caregivers. 

In a sense, my day starts when Mary Ann settles in bed.  There are periodic needs during the night, but the general pattern is that the time I can call my own comes between about 9pm and 1am. Now that I am retired, I am able to sleep longer in the morning, assuming Mary Ann is willing and able to sleep later also. 

Before I retired, the pattern was about the same, except that sleeping later in the morning was not as often an option.  Those of you who are working full time and caregiving full time are likely to be exhausted most of the time, especially if you also claim that late night time as your own.  Here is the logic of staying up.  The moment the Caregiver gets up in the morning, assuming the Carereceiver gets up then also, it all starts over again.  Waking up in the morning is waking to intense demands.   To go to bed at the same time the one for whom you are caring does leaves no time just for yourself — just to be one person only.  

Of course this is an unhealthy pattern.  Sleep deprivation has very destructive consequences.  It affects negatively our ability to perform daily tasks effectively and efficiently.  We are hardly at our best.  Coping with little stresses becomes more difficult.  Mole hills actually do become mountans in our mind.  We can become forgetful, irritable, our thought processes can slow.  I need no scientific studies to demonstrate the truth of those conclusions about the impact of too little rest. 

Now comes the time to share wonderful solutions to the problem of Caregiver exhaustion.  If I had this one solved, I would not be writing this post at what now is about 12:20am.  I will offer some of the feeble attempts I have made over the years of dealing with this particular dimension of the Caregiver’s challenge.  For one thing, I structured the week so that I had some long days and some days to sleep in.  It seemed to work better for me to work many hours in one day than normal hours two days.  By the way, I realize that doing so breaks the rules for sleeping well, the ones that say, get up at the same time every day, go to bed at the same time.    Another rule I regularly break is the one that says, no caffeine later in the day.  Caffeine is my drug of choice.  Evening meetings, if I hoped to actually be awake during them, demanded a heavy dose of caffeine through my chosen delivery system, PT’s Coffee (by the way, the best in the nation as far as I am concerned — sorry, Starbuck’s fans). 

On occasion (too rarely), a Volunteer or my daughter would come over and sleep upstairs to care for Mary Ann during the night, while I got a full night’s sleep in the downstairs.  Especially when I was working, those occasional two night retreats would include nights in which I slept ten or twelve hours. 

Had I continued to work much longer, circumstances would have demanded using the local resources I mentioned in last night’s post to provide paid time covered by others so that I could get rest on occasion.  

Since it is now heading for 12:40am, it is apparent that I need counsel from any who happen to read this post and have ideas for how to minimize Caregiver exhaustion.  One possible solution would be to simply stop trying to write posts for this blog any longer.   Two reasons speak against that solution.  One is that I would be likely to just sit in front of the tube flipping between inanities there.  The second is that I find doing this writing very satisfying and energizing.  Anticipating writing adds interest to my days and makes be a better (and more sane) Caregiver.  The processing I do here has had a very positive effect on my ability to reframe sometimes frustrating tasks in ways that allow me to discover meaning in those tasks, at the same time giving my life meaning.  Why so tired?  It is heading for 1:00am now.  All in all, I am willing to endure being tired if it allows me to live meaningfully. 

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.

 

April 5, 2009

Caregiver Options for Support

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , |
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Who can we talk with about our predicament, who isn’t tired of hearing it or just doesn’t have any frame of reference to really understand what we are going through?  It is terribly easy to become isolated.  Since conversation isn’t an easy thing to accomplish when words for one are difficult to find, let alone get out where they can be heard, a longing to talk and listen and be understood. 

Last Thursday evening Mary Ann and I attended a monthly Parkinson’s Support group meeting in our area.  The group varies in size, but lately I would guess there have been thirty-five to forty-five of us in attendance. 

I remember the first support group we attended just a few years into Mary Ann’s diagnosis.  It was in another city — a large group with Parkinsonians at all levels of symptoms.  I can remember seeing one man in particular who was so dyskinetic that it was all he could do just to stay on the chair, arms and legs flying everywhere.  I suspected it would be so.  After that visit to a support group, it has been all but impossible to get Mary Ann to another one anywhere.  It just seemed scary to see the possibilities for her future right there before her eyes.  It was a denial shattering experience. 

Now that I am retired, we have started attending a local Support Group.  Mary Ann is now far enough along in the progression of the disease that there are few, if any, more debilitated than she is present at any given meeting.  Last Thursday was one of the times we separate into two groups, Caregivers and Carereceivers.  Those who attend the support group seem to especially appreciate the evenings we divide into the two groups. 

There is an agreement we make when we head into our respective rooms.  What happens in Vegas, stays in Vegas.   We are free to talk openly about our respective struggles without concern that what we say will be shared with anyone outside those gathered there.  That means, I will not share what was said, at least in specific terms, only in general terms. 

Both Mary Ann and I especially appreciated our respective group conversations last Thursday.   In the Caregiver group, we share our unique circumstances and our central problem.  We understand each other.  We help each other by sharing how we have dealt with challenges that are just coming over the horizon for others.  We pool our knowledge and each leaves with a new piece of information, a new possibility for dealing with whatever we are going through at the moment.  If nothing else, we have had a chance to vent for a moment with people who actually do understand what we are going through. 

It takes courage to break out of our isolation and open ourselves to people, most of whom we barely know.  When I was working full time, my circumstances allowed me to talk freeling with caring people with whom I worked.   When I retired, that outlet ceased.  That support group ended.  I realize now even better just how important it is to take seriously the need to connect regularly with people who are traveling the same landscape, who can support us in very concrete ways with information and insight. 

The Leader who facilitates our group on the evenings we divide into the two groups is the Caregiver Program Specialist for this Area’s Agency on Aging.  The website for our Area Agency is www.jhawkaaa.org. I suspect that in most other areas there are such programs available.  We discovered that help is available for some of the equipment that is needed to help with the mobility and safety of our Loved Ones. We discovered that there are programs that provide respite care so that Caregivers can have a break from hours to days, including overnight.  There is even some funding that allows that care to be given at little or no cost to folks who need the help, with no income guidelines restricting its use.  While there may or may not be funds in your area, it is important to look for support options.  We cannot do this for long by ourselves.  For our sake and the sake of our Loved One, seek support options. 

In our case, the combination of family, Volunteers, paid workers from private agencies, and County or Regional programs for the Aging combine to help us find a balance that raises our quality of life.  For those who have earned income and must use paid help to keep working, there is a tax credit available for dependent care. 

One piece in the support puzzle for me is an online group for the spouses of those who have Lewy Body Dementia.  Since Mary Ann has now been diagnosed with Parkinson’s Disease Dementia, the group has been a meaningful addition to my world of Caregiving.  That group is available at any time day or night.  They are as close as the keyboard on the computer.   Members of that group share completely openly, confident that others understand.  Someone in that group has been, is now, or will be experiencing their plight.  Members can cry on each other’s shoulder or laugh at the silliness we sometimes encounter.  Whatever the chronic disease that lives at your place, there is likely to be an online group to be found by searching for the name of the disease adding words like support or support groups.  I found this group through the Lewy Body Dementia Association site,  www.lbda.org.

Caregivers do not only give the hands-on care, we are charged with the task of seeking out and managing options for support that keep us and our Loved Ones safe and healthy.  When someone asks what he/she can do to help, suggest conducting a search of resources.  As Caregivers we are often overwhelmed with the steady stream of needs.  It is important for each of us to move out of our isolation and through our reticence to reach out to others for support. 

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.

 

April 4, 2009

Carereceiver’s Feelings about Caregivers

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , , |
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As I traveled in the car coming back from my Renewal Retreat, I thought about how the transition back to my role as the full time Caregiver would go.  Having done retreats before, I knew that once I was in the door, there would be little chance to ease back into the demands.   Having realistic expectations about the transition back to Caregiving duties has helped me very much in the last years. 

It is actually unreasonable to expect the person who has been left at home to be anxious to celebrate the wonderful experience you have had away from him/her.  As Caregivers it is important for us to try to put ourselves in the place of our Carereceiver who does not have the luxury of going on a retreat and enjoying some solitude, doing things for the sake of renewal, things they can no longer do. 

Sometimes the very things we do to help maintain our equilibrium so that we can continue to be good Caregivers make our Loved One’s jealous.  How could it be otherwise.  We are the people closest to them.  We are the ones they depend on for all their needs.  They would love to be able to take care of themselves.  They would love to take some time to do the things that used to bring them joy.  They would love to get away on their own just to enjoy themselves.  They can’t any longer.  Our freedom, however limited we may feel it to be, can be for them a painful reminder of the freedom they have lost. 

As a result, sometimes Caregivers don’t hear the words of appreciation for all they do, words they would like to hear.  Sometimes Caregivers receive some passive aggressive indications that they are not appreciated.  Sometimes Caregivers feel as if their Loved Ones resent them instead of appreciate them.  Sometimes they do resent us, whether it is fair or not for them to do so.

I have taken over the kitchen duties from Mary Ann.  Her way of responding if anyone asks about cooking is to say, “Theywon’t let me in the kitchen any more.”  She says it with a tone that sounds blaming.  It is the way she expresses her frustration that she has lost one of her most meaningful activities, one from which she got lots a positive feedback and satisfaction.

When the Grandchilren come and visit, there are hugs and kisses for both Grandma and Grandpa, but I am the one who can respond to the Grandchilren, who can talk with them and read to them and play with them.  The attention they give me is hard for Mary Ann to see.  It is another reminder to her of what she has lost. 

When people visit for any reason, her words are few or barely audible due to the progression of the Parkinson’s Disease.  I am the one who engages in conversation.  She has always been the entertaining one who had the smart-aleck comments to make.   She still has that wicked sense of humor and will get you when you least expect it.  Those who know her well still enjoy her sense of humor.  Now, her thoughts don’t always translate into audible words quickly enough to keep up with many conversations.   Of course, she gets frustrated and a little jealous.   

Caregivers are the ones who are the most accessible when Carereceivers need to vent their frustrations.  Their limitations are highlighted by anything we do, especially anything that was in their territory before the chronic illness took its toll. 

We feel hurt that we are doing so much for them but are not appreciated adequately for it.   One of the tasks that comes with caring for someone we love is to allow them to express their frustration, yes, even at us.  We are only human, so it does hurt when it happens.  The real culprit here is the chronic disease, in our case, the Parkinson’s.  While resentment and hurt feelings are a part of the Caregiver/Carereceiver relationship, it is the third member of the relationship, the chronic disease that is the source of the frustrations. 

In our best moments, we can talk about the frustrations and the jealousies and the hurt feelings and the lost freedoms.  My goal in keeping my equilibrium in the face of what the Parkinson’s has tried to steal from us is to match expectations with reality.  If I am constantly expecting Mary Ann to behave in a way that caresses my ego as a noble Caregiver, when she does not, my feelings are hurt, I am disappointed, and even more frustrated by all the difficult tasks associated with that Caregiving.  When I remember what has been taken from her, how hard it is for her to accept that she cannot do almost all of the things that formerly brought her satisfaction, when I remember what she has lost, it is easier to accept the times her frustrations come my way. 

It isn’t fair, it is just what it is.   Yes, there are sometimes hurt feelings and misplaced frustrations.  It comes with the territory.   The goal is to recognize the real culprit and refuse to allow that culprit to damage our relationship.

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 28, 2009

Caregiver, What can I do to Help?

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

 

March 27, 2009

Working and Caregiving: Help!!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , |
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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.

 

March 25, 2009

Caregivers/Receivers: What about Anger?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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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.

 

March 23, 2009

Caregivers/Receivers Romance! (Rated PG45)

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In last night’s post I said I would do it.  Tonight I will keep that promise, or threat, depending on your perspective.  As I said last night, this is rated PG45 since that number exceeds the ages of our Daughter, Son and their spouses.  As Daughter-in-Law Becky once said when I was only hinting at something that could move into the forbidden area of parents intimate activity — “Too much information!!” 

Since I am old and by some measures (probably most measures) a little stodgy, there is no need to fear too much information.  In saying that, I have, of course, lost all those curiosity seekers who ended up here in hopes of finding something titillating.  I am not sure this old ticker could handle much titillation.  With that said, we old folks still have young folks living inside of us. 

I remember sitting in a movie once, I think it was one of the Grumpy Old Men movies of some years ago.  There was a scene in which Walter Matthau and Ann-Margaret kissed — right on the lips.  Everyone in the theater who was under thirty groaned audibly.  From right behind us I heard at an “Oh gross!” 

I do have to admit that the thought of kissing Walter Matthau full on the mouth is hardly appetizing.  Then again, Ann-Margaret is another story.  What the young among us probably don’t understand is that we old people think other old people are cute, sometimes downright good-looking. 

What is at issue for Caregivers and Carereceivers is how to keep romance alive when meals are often interrupted by bathroom duties and waste management is a routine activity, when arms and legs and stomachs have grown or the skin on them gathered into wrinkles.  How is it possible to get excited about one another when one is tired and annoyed by having to do everything for the other, and the other is tired and annoyed at being followed around and scolded every time there is some behavior the other one doesn’t appreciate? 

Now comes the real problem.  I have just asked the question.  How the heck am I supposed to answer it???? 

Let me start this way.  Mary Ann and I are in our mid-sixties.  When I look at her, I see the cutie whose engagement picture hangs on the wall of our bedroom.  Forty-four years has not stolen from me the feelings that drew me to her.  I would not presume to speak for her.  In fact, I might actually prefer not having her speak to this issue.  I can remember the feelings I had before we met, fell in love and married.  I remember the profound loneliness of being a young single fellow who sometimes felt deeply sad, not sure why.  Once Mary Ann entered my life, never again did those lonely, deeply sad feelings return.  While I don’t fear death, I do fear the return of those feelings, should she leave before me. 

How do Caregivers and Receivers experience romance?  First of all, we do!  Understand, romance is not just about body parts and orgasms and ejaculations.  In fact, those whose understanding of romantic love centers on the biological act of intercourse, have no hope of ever experiencing romance.  By the way, old people actually do know about the biology of conception.   Some of us have had children.  While I happen to have been a pastor at the time and am familiar with the Biblical account of the Virgin Birth, we had our children the usual way. 

I have read many emails from those who are caring for a spouse who has ceased to be the person they married.  They have only memories to draw on for those romantic feelings.  How can they find a way to express their love.   If love was just about body parts and couplings, there would only be sadness left for many. 

The marvel of it is, love, romantic love, has depth and awe and wonder that is only hinted at when people first fall in love.   My favorite movie of all time is no secret to those who know me well.  It is “The Man from Snowy River.”  I don’t know what lies deep in the recesses of my psyche that draws me to it, but I can tell you what I recoginize about it that draws me.  They are simple things.  I love the photography, the scenery.  That movie is the reason one of my dreams has been to visit Australia.  The scenes of running horses will take your breath away.  There are two central themes that draw me to it.  One is the coming of age of a young man who proved himself in spite of the odds against him.  I suppose a 5′ 6″ kid with who had Rheumatic Fever and was not at all popular might understandably enjoy that sort of theme.  The other central theme is the romance that grows between Jim and Jessica.  It is beautiful and touching even to a guy not much into chick flicks.

In the sequel, “Man from Snowy River Two,” the ending is, as with every such story.  Maybe not in so many words, but the ending is, and they lived happily ever after.  “Happily ever after” is what romance is about.  The “ever after” in happily ever after lasts through smelly socks, passing gas, spitting up babies, rebellious teenagers, unsuccessful recipes, stupid comments, throwing up, diahrrea, tragic events, bad mistakes, arguments, hurt feelings.   The love that creates and sustains a relationship after riding off into the sunset can endure waste management, food that lands on the lap and on the floor, caring for bedsores, seeing that blank look of no recognition in the eyes of the object of that love, because of the dementia, hearing harsh and unloving words from the mouth that you kissed in former years. 

That isn’ t pretend love.  It isn’t some poor substitute for the rolling and grunting of biological coupling (which, by the way, is great fun).  It is something that is in its own way, beautiful and meaningful and romantic and intimate beyond anything that could have been imagined when lips touched in that first kiss decades before. 

I will say this much that is specific and personal.  Once or twice a week, I have the job of washing and drying Mary Ann’s hair.  (The Bath Aid does it twice a week also.)  Mary Ann has great hair for which she often gets complements.  While the Parkinson’s has taken much from us, washing Mary Ann’s hair brings wonderful feelings of intimacy.  It is tactile and gentle and relaxing and warming.  Running my fingers through her hair as I dry it is my experience of “happily ever after.”   The other day, Mary Ann gave me a kiss on the neck as I was bent down pulling up the disposable underwear after using the commode.  (Too much information?)  Strangely, in a way, the Parkinson’s has brought more intimacy than it has taken away. 

I would like to think that  Jim and Jessica will grow old together — that their love will grow until they know what it is really like to live happily ever after.

Those of you who are in the throes of caring for a spouse whose chronic illness creates barriers in your relationship, I guess I would like to know what brings real romance into your lives.  How do you cope? 

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.

 

March 22, 2009

Caregivers: What about Death?

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I spent almost an hour this evening with someone whose family Hospice told is in his last twelve to twenty-four hours of life.  Before retiring last summer, my career had been to serve as what in my religious tradition is a called a pastor.  What I have to say in this post is not only for those who happen to have a spirituality like mine, or any spirituality for that matter. 

First, I have a belief system that is secure and unwavering.  There are tools at my disposal when spending time especially with the dying, tools that offer profound hope in the face of death.  I make no apology for having such a belief system.  I do not ask the readers of this blog to share that belief system or any belief system.  It is my hope that my reflections on death have implications for all of us as we finally have to face the inevitable.  We cannot make it go away.  As helpful as denial is in the day to day celebration of life in the face of chronic illness, death must be faced for there to be any real joy in life.  Otherwise we are left with a spectre hanging over us that steals the joy from our days. 

Doc and I talked about how hard it is to leave behind people who are loved deeply.  Who will take care of them?  When the time comes, both those giving the care and those receiving the care have to come to terms with the separation that comes with death. 

Let’s not tiptoe around this one.  I have heard the plight of folks much farther into the unbearable pain of caring for someone who no longer recognizes them, someone who can do nothing for him/herself, who cannot converse, who is for all intents and purposes gone with only a shell of their former self left.  I have felt their frustration as they talked about struggling to love what is left of someone they loved deeply before the Dementia took its toll.  

How can they not long for death to come and release their Loved One from their helplessness?  How can they not long for death to release them to live again if they see death to be transitional rather than terminal.  This one is hard for me to talk about since Mary Ann and I are still far from that point.  In fact, I am anxious to write a post on Caregivers’ Romance, which by the way will be rated PG 45.  It is rated that way to warn our children and their spouses who may put what I write in the category once named by our Daughter-in-Law, “too much information.” 

For tonight, it is death that is on my mind.  Is death friend or foe?  While my theology has clear language addressing that matter, the experience of folks with whom I have interacted over the years is not simply theological.  It is experiential.  When death comes in a sudden, tragic way, when the victim is young, death is the enemy.  When someone has lived fully for many decades, when someone has fought a terribly debilitating disease, death may very well be a welcomed friend. 

The truth is, of course, that death just is.  However we define it or describe how we feel about a particular death, it just is.  We have no say about whether or not it will come.  It will come.  How it comes, when it comes is worthy thoughtful reflection and discussion.  Whether or not any one of us will die is not up for discussion.  We will. 

 My goal with Doc was to help him find his way to peace.  The way to peace is to finally decide to let go.  Both Caregivers and Carereceivers have similar problems.  Neither wants to let the other go.  Each thinks that by hanging on to the other, they can change the inevitable.  Each thinks they can keep the other for them to love.  They can keep the love alive, just not the body. 

Until we come to terms with death, we cannot live meaningfully — sadness is unbearable, and joy is shallow and fleeting.  We experience little deaths every time there is a separation.  There are tearful goodbye’s at the doors of preschool classrooms and college dorms and weddings.  I remember my Mother commenting that when we returned home for a visit as an adult family, when we left, she had to get in the car, go out and do something.  It was hard to say goodbye even then. 

We don’t want to let go.  If we don’t, however, if we don’t let go of that little one trying to learn to walk, that little one will never learn to walk.  If we love our child, we have to let go.  Otherwise it is not love, it is ownership, possession.  It is about us, not the child. 

Yes, to let go at the time of death is an act of love.  It is an act of love for a Caregiver to finally say, “I love you, I will miss having you here, but it is okay for you to leave.  I will be okay.”   It is an act of love, a final beautiful gift to the Caregiver and those who want so badly to keep the one they love, it is a gift to say to them, I love you, I will miss you, but it is okay for me to leave leave you now.  You are free to live. 

For the dying whose capacity to communicate has long since gone, the words of love may not be there, but the person who lived in that body before the Dementia took him/her still leaves behind love from better times.  The care you have given, maybe long after romantic feelings have been snuffed out, carries within it, love from former times.  Death can free memories of better times to surface and overshadow the struggles and the pain and the hopelessness. 

Death by its very existence gives life its sweetness.  In his dying, Doc is touching his family in a way that has folded into it an intimacy that can be found nowhere else.  I have had the privilege of experiencing a moment of that deeply moving intimacy. 

Is death friend or foe?  Sometimes it can be a merciless foe.  Tonight, as it approaches, it is a wise and thoughtful friend – a gift ready to be opened.

 

March 21, 2009

Stuck Caregiving! What am I missing?

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We are now into the later stages of Parkinson’s and moving into Parkisonson’s Disease Dementia (a Lewy Body Dementia).  Traveling is tough.  We can’t really plan much of anything since we never know from one hour to the next whether Mary Ann will crash and fold for a couple of hours of napping, have a major intenstinal event, or need a trip to Baskin and Robbins, or Sonic, or DQ or Sheridan’s.  Getting very far from medical facilities that can handle the complexities of her convergence of medical problems, provides a strong disincentive to venturing very far. 

To a certain degree, we are trapped by the Parkinson’s.  The dream of that train trip across Canada appears to be left to the world of fantasy.  My dream of a log cabin in the country is not an option, although I doubt I would be willing to do the work necessary to take care of such a place anyway.  That trip to the Snowy Mountain region of Australia is out of the question. 

There are all those other retired folks who travel and dine out and go to shows and concerts.  We have never so much as seen the Grand Canyon.  Just watch cable television for a while and look at the beautiful, exciting places to go and things to do.  There will be no dinner-dances (gratefully, since I can’t dance).  There will be no treks into the woods or wetlands for rare bird sightings. 

What are you missing?  What are the things you planned to do before the Chronic Illness joined your family?  Are you going stir crazy looking at the four walls of your home, or the inside of your car as you make short local trips, or the waiting rooms of multiple labs and doctors offices?

I have to admit that at the moment, I do not have identifiable feelings of resentment about what I am missing.  I can only speak for myself on this.  I will not presume to speak for Mary Ann. 

We have had some adventures in our life together, however low key they may be.  We have toured England, the Netherlands, Austria, Switzerland, Belgium.  We have cruised the Virgin Islands and traveled to Denali in Alaska and cruised the coast to Vancouver.  We have skiied in Colorado.  There was also that trip to DesMoines — the notorious diversion from Colorado triggered by uncooperative children in the back of the station wagon. We have made it to see Santa Barbara and the Carolinas. 

All that is not to impress you with our travels.  For over forty-three years of marriage, that is nothing to brag about.  That is not the point.  The point is, as much as we were in awe of the beauty we saw, it did not give our life meaning and purpose.  What we saw was interesting greenery, colorful flowers, varied topography, beautiful structures.  Sometimes we stayed in rooms with nice looking decor, sometimes in very ordinary accommodations. 

When a Volunteer comes to stay with Mary Ann for a couple of hours, I sometimes head to a nearby lake with some of the most beautiful gardens imaginable, filled with ponds and waterfalls, colors dramatic enough to take my breath away.  I can head out to places where Eagles are nesting and water birds are migrating by the tens of thousands.  Within an hour and a half of here we can find restaurants as good as any anywhere and take in the occasional show.  When all the pieces fall in place, I can travel to a spot a few hours away and spend two or three days in utter solitude, hiking and reading, observing wildlife, feeling the warm sun and the soft breeze on my face, the rustle of the leaves, sunsets that fill me with wonder. 

Yes, I am missing wonders that are spread all over the world.  What I am not missing is the capacity to experience the marvel of all there is to see as the sun and the moon and the stars illuminate the part of the planet in which we live.  The topography (admittedly, pretty flat in this Midwestern location), the flowers, the birds, the trees, the wildlife, restaurants and stores and movie theaters are here to be experienced. 

More than that are people of all sorts, with stories to tell.  In fact, through the wonders of technology, I can interact wtih people from all over the world.  In our online group of Spouses of those with Lewy Body Dementia, there are people from New Zealand, from Italy, from Wales, from Canada, from all over the this country.  There are children and Grandchildren to be celebrated.

I guess I am just not sure I am missing anything so important that it needs to make me sad.  Sure, if circumstances allowed it, we would take that train trip across Canada or see the Grand Canyon, I would venture off to Australia, live in a log cabin in the country, but if none of that ever happens, I will not despair at all that I have missed in life.  Life has been full to the brim.  More than I ever thought to dream has come to be in one way or another. 

Again, I have to ask, what would you like to experience were it not for the commitment to Caregiving that shapes your life now and limits possibilities?  How does it make you feel no longer to have the option to realize those dreams as you had imagined them?  What do you do with those feelings?

 

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