April 11, 2009

Caregiver Decisions: Right or Wrong?

Posted by PeterT under Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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Should I or shouldn’t I?  Decisions come at such a pace that often it is just impossible to give each one its due.  Sometimes little decisions accumulate, and before you have time to really think about it, the decision is made.  Which decision is the right one?  How can I be sure it’s right?

About a year and a half ago, I made a decision, a big one.  I decided it was time to end a very satisfying and stimulating and meaningful career of some forty years to do full time care for Mary Ann, twenty-two years into Parkinson’s Disease.  Was it the right decision?

While the decision was made and announced a year and a half ago, the actual event took place about ten months ago.  I haven’t yet had a full year’s cycle since the day that career came to a screeching halt.   If I had been burned out it would have been an easy call.  If I was tired of the people and the demands, retirement would have been the obvious choice.  If I felt the people I was serving were anxious for me leave the job (I have no doubt some were), it would hardly have been a decision at all.  There was warmth and affirmation voiced by enough to make me feel that I was appreciated.

The truth is, it was actually a decision!  Most choices we make, while we may call them decisions, are actually simply the logical next step along a path that is actually very clear.

The word decision has as part of its root the word translated “cut.”   An actual decision is a choice that demands cutting away something of value for the sake of something else of value.  Which is which is not always clear.  In fact, my use of the word “decision” demands that the choice is not clear — at least at first glance.

I made the actual decision to retire in approximately thirteen seconds, while sitting across from Mary Ann at McFarland’s Restaurant.  Does that sound cavalier, irresponsible?  I saw Mary Ann struggling to get food out of the dish to her mouth, finally giving up in frustration.  It is as if a switch in my mind flipped.  It was a switch of recognition that the time had come.  The time had come to give her my full attention instead of having to struggle for bits and pieces as I focused on my career away from her.

Understand, while the decision was made in thirteen seconds, the process leading up to it had gone on for years.  There were many pieces that were coming together to create the environment from which that decision emerged.  While I would be retiring a year early relative to Social Security, I was vested in my pension and would have a far smaller income stream but not much different from what would be available if I waited another year.  The shock of the lower income would be significant whatever the year I chose.  Another piece was that the number of Volunteers to stay with Mary Ann was diminishing at a fairly brisk pace.  My Daughter and Son-in-Law  needed to return to Kentucky, since the two year commitment they had made was up.  The employer in Kentucky was ready for the return of a valued employee closer to the home office.  Our Daughter had been our mainstay during those two years.

One of the significant pieces of the landscape in which the decision was made was the difficulty I was having doing my work justice with the roller coaster of demands that come with caregiving.  What insulated me from that dimension was a remarkable professional and support staff that, to put it bluntly, covered my tail!  There was a high quality of service provided the community in spite of my limitations.

I can remember saying many times that I would not be a good full time caregiver.  I had decided to work well past retirement age, using whatever resources were available to care for Mary Ann while I worked on.  Even when I began thinking about moving toward retirement, I did so with a deep terror that it would be a disaster for both Mary Ann and me.

In that thirteen seconds, it became crystal clear that I needed to have time with Mary Ann while she needed me most.  Actually, Mary Ann was not really so excited about the prospect of my being at home all the time.  She has a set of feelings of her own about my presence with her — but I am the one writing this post, so you will get it from my perspective.

While I would like to be seen as noble and compassionate and a dedicated husband, I did it more for me than for her.  I have a pretty realistic understanding of humanity.  Most of us do what benefits us.  I needed to stop working and come home to Mary Ann.  I needed it for selfish reasons.  First of all, I do love her in that deep way that includes romantic love and the kind that takes decades to build.  You can only understand it when you  have experienced it.  I made a choice that I could live with.  I care who I am and who I become.  Making that choice brought with it pain beyond description and a deep feeling of worth and value that cannot be stolen from me.

When a decision must be made, each option has good stuff and bad stuff in it.  If it were all one or the other it would not be a decision.  To make a real decison means losing the good stuff in the option to which you say no and gaining the bad stuff in the option to which you say yes.

This week I am feeling the pain of what I have lost.  At the same time, I celebrate what I have gained.  I have gained time with Mary Ann, including moments of frustration for both of us and moments of joy.  Yes, I am watching her slowly decline, but I am here to see it and have some small impact on how it goes.

In a sense, I have moved from a life that included external validation from a salary, from working in a public forum, from others whose lives I entered at some of their most important times, to a life focused on internal validation and the chance to be there for another human being (whether she likes it or not) in a meaningful way, one that makes a difference daily.

Did I make the right decision?  I have no doubts!  In fact, that thirteen seconds was so decisive as to have freed me not to waste a minute on regrets or second thoughts.  I am free to live each day to the full, whatever frustrations or joys it brings.  I get to do it with someone I love.

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 9, 2009

Caregiver’s Loneliness

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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A comment on a post I wrote a couple of nights ago raised an issue that is significant for many Caregivers who are doing full time caregiving all day long every day.  The writer mentioned that she often uses the time after her Loved One goes to bed to try communicate with others, since the opportunity for adult conversation is limited.

For many of us conversation that was a routine part of our daily lives with our Loved One and with others has pretty much ceased.  Especially those caring for someone with a form of Dementia find it tough to converse meaningfully.  A number of recent emails from others who are caring for spouses with Dementia have included reflections on the challenge of dealing with the lack of meaningful conversation and the loneliness that sometimes settles in.

Until I retired a number of months ago, I was active in a profession that involved lots of meetings, visiting with people, counseling folks struggling with problems, speaking in front of groups, and many hours each day communicating electronically (email).  All of that came to a halt pretty much the day I retired.  Emails ceased, phone calls stopped, meetings ended, there were no more visits to be made, no more speaking in front of groups.

Now there is one person stuck with me twenty-four hours a day, seven days a week, someone who has never really been a talker and now after twenty-two years of Parkinson’s has taken its toll finds great difficulty getting thoughts into words and sustaining conversation.  She has struggled with the challenge of having me there constantly, so I can hardly complain.  She tired long ago of listening to my voice as it drones on and on.

One comment in an email I read tonight provided an image of the Caregiver in need of communication.  She mentioned that when she was at the dentist getting her teeth cleaned, every time the Hygienist took her hands out of her mouth she started talking immediately, not stopping until the instruments were back in her mouth.

I find myself starting conversations in with strangers in line at the store, or making conversation with the person at the register. Anyone who dares cross our threshold is likely to be fully engaged in conversation by the time their second foot has landed inside.

Anyone who reads this blog has certainly noticed the length of the posts.  When I write I imagine that there are people actually reading this with whom I am having conversation.

Living in a world of silence other than the sound of the television, can certainly produce a deep sense of loneliness.  I suspect there are lonely Caregivers by the tens of thousands out there.  It seems to me very likely that lots of them, probably a majority, are not computer users who have the option of going online and relating to others regularly. If the Caregivers are lonely, imagine how lonely and bored those who need the care must be.

There are no simple solutions to the loneliness and isolation, the boredom and lack of conversation that comes with the Caregiver and Carereceiver territory.  For me the battle with loneliness starts with developing a rich inner life that experiences each moment fully and fills my thoughts with wonderful images from my environment, from reading, from the lives of others I have encountered, from my own story, from a head filled with unfinished business, from intellectual and spiritual curiousity.

While I have never been a writer, the exercise of writing these posts is safisfying and fulfilling.  Reading emails and occasionally responding to those who are caring for spouses with Lewy Body Dementia is engaging.  When Volunteers come to stay with Mary Ann to give her a break from my constant presence, it takes me a long time to get out the door as I engage them in conversation.  I find myself on the phone with brothers and sisters more often than ever before in my life.  Trips to the coffee shop to get a cup of coffee take a little longer. When we attend the Parkinson’s Support Group meetings, I am not shy in speaking up.

Since I am not good at all at small talk, I know very little about sports and I am completely uninterested in debating politics, conversation just for the sake of talking is not all that satisfying.  I suppose I can talk about the weather with the best.  I do have a genuine interest in people’s stories, so given the opportunity, I will find out what you do and what you like and dislike about it, where you have lived, what challenges you have faced and how you are coping with them.  The problem when homebound by the Caregiving task, or the chronic illness, is that the opportunities for such meaningful conversations are limited.

While it helps, electronic communication is not fully satisfying to me since I thrive on the non-verbal elements of communication as well as the actual words themselves. Getting out of the house with the one for whom you are caring is worth the effort.  Go anywhere.  Do anything.  Put yourselves out there where the chance for human interaction and verbal interchange is possible.

Every job has its good points and its bad points.  The trick is to “accentuate the positive and eliminate the negative” as the lyrics to an old song say.  Celebrate what is good that the Caregiving experience brings into your life.  Refuse to give the negative more power than it is due in ruling, in defining your life. I know that is far easier said than done.

Caregiver loneliness — Are you?  What are you doing about it?  What works for you?

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 8, 2009

Caregivers: Shall we Travel?

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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.

 

April 2, 2009

Caregiver Self-Care: Renewal Retreat Results

Posted by PeterT under Meaningful Caregiving, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , |
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Early this evening I returned from two nights and three days at St. Francis of the Woods Center for Spiritual Renewal in Oklahoma.  As I had anticipated in my last post, the experience was at least as meaningful as I had expected it to be.  The five hour drive provided transition time, time to unwind, time for my mind to race through whatever it needed to process so that I could fully experience the time there engaging in each moment as it came. 

It takes time to disengage and let go of all the pressures and responsibilities of Caregiving and work, if you have other work in addition to Caregiving.  A three day Retreat allows time that needed time.  Knowing that Mary Ann was in capable hands during the time I would be gone was important to allowing the freedom to let go. 

For those who know our household, it is hardly necessary to add that the trip down included a stop at Braum’s for a two scoop hot fudge Sundae with lots of salted pecans, topped with whipped cream and a cherry.  Let’s be straight about this renewal business.  Ice cream (or whatever your favorite treat is) goes a long way toward nourishing the rest and renewal muscles. 

The retreat content was as described in my last post.  There was no agenda.  I needed time to be free to initiate activity as I felt the need.  When Caregiving, of necessity, Mary Ann’s needs take priority.  By contrast, on this Retreat, I decide what to do and when to do it. 

I walked outdoors for hours.  I walked slowly, savoring the sounds and sights and sensations as they came.  I engaged fully each moment.  I felt the warmth of the sun and the feel of the breeze early the first evening.  I watched and listened intently for birds especially.  I watched an Oklahoma storm develop and pass over.  During nine years living in Oklahoma City, both Mary Ann and I came to love watching those storms develop.  

When the storm started producing lightning, I had enough sense to head back to the cabin.  I knew that Mary Ann would be pretty irritated if I was struck by lightning and she was left to fend for herself.  In fact, if I were hit by lightning and did not survive, she might very well have me cremated and spread my ashes in a fabric store to languish there for an eternity.  Given the option, I would prefer fire and brimstone.  Needless to say, I moved to safety very quickly. 

The next day was chilly, but bright.  I walked again.  On occasion I stopped to sit on the camping stool tied to my backpack to read or just sit and look and listen.  I suppose I accumulated eight or so hours out in that beauty that day.  Today I walked again for a couple more hours, this time walking faster, covering the same territory as the last two days, looking for surprises. 

In the course of my time outside, as I looked up at a nest high in a tree with my binoculars, I was startled by two eyes staring back at me as a Long-Eared Owl sat on her nest.  I was examined by a couple of nearby wild turkeys to see if I was a threat.  Apparently they concluded that I was not.  I was checked out by five circling Turkey Vultures trying to determine if I would be a fitting afternoon snack.  In fact this morning three circled overhead and one got so close that I could actually hear his wings flapping.  After seeing a White-tail Deer run off in the woods, a buck that was still out of sight tried to intimidate me with his loud and threatening snorting.  There is more, but that is for another post for those who love to walk in nature. 

I have to say that while there was utter solitude most of the time I was on the Retreat, I never felt lonely, I never really felt alone.  In those settings I feel a fullness, a wholeness that is sometimes hard to feel when I am in more populated settings. 

When I was at the farthest point on my wanderings, sitting in a cluster of trees, turkeys nearby, I took out my cell phone and called Mary Ann.  She wasn’t home at that moment, but I left a message with a few words about where I was and what I was doing, letting her know that I was thinking of her and that I love her. 

There is something that has come to be so for me about solitude, meditation and the power of renewal imbedded in them.  If the experience draws me away from relationship, isolates me, separates me from those I love, it is not, in my eyes, an authentic experience.  While as full time Caregivers, we need time for breaks, moments of escape, that is not the purpose of a Renewal Retreat.  If my goal on the Retreat were just escape, it would make of what I do as a Caregiver bondage instead of a meaningful calling.  If escape is the primary purpose of the Retreat, it will not renew, but do the opposite, magnify the frustrations and make the return home a time of dread. 

The purpose of a Renewal Retreat is to find yourself to be whole, fulfilled, grounded and full of life, life that cannot be stolen from you by challenging circumstances.  The images and sounds and smells and feelings, the experiences can become a well from which draughts of refreshment can be drawn in a moment’s reflection even during a busy and even frustrating day of Caregiving. 

The motivation for a Renewal Retreat is not simply self-serving.  It is pretty tough to have a meaningful relationship with someone you claim to love whether they are in need of care or not, if you feel unfulfilled and empty.   Then relationships come to be about filling our unfulfilled needs.  Relationships come to be about getting instead of giving because we have nothing to give.  Ultimately, no one else can make us whole, give our lives meaning, fill our needs.  A Renewal Retreat as I experience it gives me a sense of fulness and meaning that helps me discover again who I am, so that I can respond to Mary Ann’s needs without losing myself.  I can be a better  Caregiver and a better husband — never even close to perfect, just better.

Just as a Post Sript, the retreat ended with a lunch that is provided weekly for the staff and those who are a part of the leadership at St. Francis.   Gratefully, guest retreatants are welcome to join them for lunch.  A more delightful crew would be hard to find.  I especially enjoyed the reflective time after lunch, processing spiritual renewal and learning from one another.   Renewed in solitude and in community — what a treat!

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 30, 2009

Caregiver Self-care: Retreat

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

 

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.

 

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