I’ll bet you wish you had seen hundreds of Wilson’s Phalaropes swimming in little circles at a dizzying rate of speed, a White-faced Ibis, lots of Black-necked Stilts, a bunch of cute little Semipalmated (not fully, but only semi-palmated) Plovers, very many American Avocets and Hudsonian Godwits, not to mention the White-rumped Sandpipers and the Scissortail Flycatcher — all this along with forty-eight more varieties of birds.

I got a day off yesterday, and so did Mary Ann!  We both had a great time.  I spent the day birding with an experienced birder, a new friend that I now call Bob, and Mary Ann spent most of the day with our Son, Micah.

Arranging a day off is no small task for a full time Caregiver.  Those routines that provide the structure to the day and provide assurance that everything that needs to be done gets done, are not easily explained to someone who does not do them on a daily basis.  To write down instructions for all the routines and appropriate responses to the variety of situations that might arise would be almost impossible.  It would read like the instruction manual for a computer program.

To have a day off, I needed to have enough confidence in Mary Ann’s safety and security that I could let go of any concern, relax and enjoy the day’s activities.  There are pills to be taken, a medicine patch to be replaced, a wound to be dressed, bathroom needs to be dealt with, food to be provided, a commode to be cleaned out, maybe a shower and/or hair washed.  There are endless possibilities for problems to arise, from falls to heart pain to fainting spells.

I was able to relax completely.  Here is why:  For the last years of my ministry, we had an agency provide a paid person to do Companion Care with Mary Ann for three hours from 6:45am to 9:45am on Sunday mornings.  That was a time that it was not appropriate to ask a Volunteer to serve.  We have used two agencies mainly.  One is called Comfort Keepers and the other Home Instead.  Both are very good.  The one we have used most recently is Home Instead.  For the last couple of years of ministry, Debbie came each Sunday morning.  She became very familiar with the morning routine, including shower and hair washing, dressing, taking meds, providing breakfast, cleaning the commode and dealing with the fainting spells should they happen.  Debbie was available yesterday for the early morning shift. The cost is about $16 per hour.  It is worth the sixty dollars that it will cost to have her there, to have a day off for both of us. (Home Instead: http://www.homeinstead.com/; Comfort Keepers: http://www.comfortkeepes.com/)

For the evening three hours, Margaret was willing to come.  She is a very good friend to Mary Ann, as well as the Parish Nurse for our Congregation.  She has all the skill and experience anyone could ask for.  She has taught nursing for decades and, while retired, still keeps active, serving on call as a home health nurse for a local hospital along with serving full time as Parish Nurse — volunteering her time in that role.

During part of the afternoon, until a virus laid her low, Edie was going to spend a few hours.  She is also a good friend to Mary Ann and has dealt with everything right up to calling the ambulance to take her to the hospital when it was needed.

The best part of all was that our Son, Micah, was able to come from 9:30am to 6:30pm to be with his Mom.  Our Daughter-in-Law, Becky, and Granddaughter, Chloe, were on a Girl Scout campout this weekend.  That freed the time for Micah to come.  For a Mom to have her adult Son to herself for a full day is a treat beyond description.  Micah always brings out the best in Mary Ann.  She was alert and able to communicate.  They talked on the phone with our Daughter, Lisa.  They played some Scrabble.  Needless to say, the game only went a two or three rounds, but Mary Ann managed to come up with some of the words on her own.  She used to be merciless in playing Scrabble with the Volunteers.  They knew they were in the presence of greatness.  Micah took her outside for a trek to the nearby park, looking at flowers and enjoying the weather as he wheeled her along.  They ate some leftovers and then later headed out to get a milkshake from Sonic.  Micah and ice cream too!  Can’t beat it!

One of the special benefits of the day were the bits and pieces of conversation that Micah had with his Mom.  He got to have her at her best some of the time.  He experienced some of her hallucinations.  There were some times when she was not tracking, but much of the time she was.  While their conversations were between the two of them, one interaction that Micah shared was very revealing.  She wondered if it was not so that once a person needed to be fed, they would have to go to a nursing home.  He assured her that as long as there was someone at home willing to help, that was not so.  She has in recent days begin allowing me to help her with food, even in public.  That need must have been a great concern to her, carrying with it in her mind powerful implications.

As I processed the day, one thing popped into my mind when thinking about how good the day was for the two of them.  Mary Ann and I have enjoyed hopelessly spoiling our Granddaughter Chloe when she is with us before returning her to Micah and Becky to deal with the aftermath.  Turnabout is fair play, as they say.  After a day of Micah’s full attention, entertaining her and enjoying her every minute of the time he was there, I have to deal with the aftermath!

If there will be a Caregiver’s day off (as well as a CareReceiver’s day off), there are all sorts of things that need to be done over a period of time to allow it to happen.

For one thing, we had developed a relationship with an agency, using it on a regular basis, if only for a short time each week.  That way the option was available and familiar.  We  had already developed the booklet with all the pertinent information if any problem should arise.  (See this blog’s March 29th, 2009, post titled “Caregivers’, Carereceivers’, Volunteers’ Safety Issues” for more information on the booklet.)

We had allowed some good people to spend time with Mary Ann over the past eight or nine years, providing a cadre of people to call on, people comfortable with her, experienced in dealing with a variety of contingencies.

We planned the day far enough in advance to allow for the scheduling needed so that it could actually happen.

It was helpful to make a commitment to the day and to make the commitment to another person so that the motivation to follow through would be there.  It surprised me that I was ambivalent about going as the day approached.  I realized that as I have settled into the role of full time Caregiver, the role has come to provide a certain comfort and security.  I was apprehensive about being away for the day.  I have come to find meaning in what I do here to the extent, that it was a little uncomfortable to think of being away from that fulfilling task.

The day off was good for both Mary Ann and me.  We had a chance to be ourselves, each separate from the other.  It was reassuring that we both had a very good day. That the day went well encourages us to do it again some time in the future.  It took lots of planning, but it was worth the effort.

Caregivers, take a day off! It will do both of you a world of good.

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.

As I sit here at my computer writing this post, Mary Ann is in bed and secure.  Even though the door is closed and the bedroom is in another part of our small townhome, I can see her in bed.  Sometimes electronics actually help!

This afternoon we made a stop at Babies R Us.  I ran in and purchased an A-V monitor set.  It includes a camera, video display unit and a portable audio-only unit that can be clipped to a belt.  What is especially important for me is the size of the video unit.  it has a seven inch screen.  For me that means that as I look at the computer screen, out of my peripheral vision I can see her movements.

After ending up back at the Dermatologist’s office to sew up again a large incision that had broken open completely when Mary Ann fell directly on the stitched area, I decided that I needed to either be joined to her at the hip or find some way to see when she gets up from the chair even if I am not in the room.

I called the manufacturer before I bought this set to determine how to obtain a second camera.  That way I can have one in the bedroom aimed at the bed and one in the living room aimed at her chair.  On Monday, I am going to check on whether or not I could buy another kit (the cheaper one without the audio-only unit) and have two screens as well as two cameras.  I would like to be able to have one in a spot in the kitchen that will allow me to see her from there or from the dining room table, providing even more security. After she was in bed this evening, I was at the dining room table and barely heard her calling.  She had tried to turn over in bed and ended up on her knees on the floor next to the bed.

It just worked!  As I was typing the previous sentence, I saw her moving around.  I checked on her and found her trying to turn over to face the opposite direction.  I was able to help her.  Her Parkinson’s has taken from her the ability to move freely in bed.  I would rather help her when she begins the task of moving than wait until there is a problem that might result in damage.

This new monitor will replace the audio-only baby monitor that we have been using.  One problem for us with audio only is that her voice has gotten so low in volume that it is very difficult to hear her calling over the sound of the television in the bedroom.  The television is Mary Ann’s version of a night light.  While having the television on in the bedroom is not recommended by those who study sleep patterns, it is an important part of Mary Ann’s world.

The security that the A-V monitor provides is not just Mary Ann’s security.  The prime goal is to protect Mary Ann from harm.  Not far behind that goal is the goal of my freedom and peace of mind.  When she is out of sight, I am always aware of her potential for getting hurt, mostly from popping up out the chair and ending up on the floor.  I can feel the stress relief that comes with having her in view when she is in another room.

One of the heaviest burdens of Caregiving is the loss of freedom to move about at will.  When she fell, I had just gone into the kitchen to get something for her.  To lose the freedom to move about the house would be intolerable.  One of my primary distractions when trapped at home is the computer.  I need the freedom to head down the hall, away from the television and concentrate on what I am doing at this desk.  This monitor, as long as it continues to work, gives me that freedom without sacrificing her safety.

There is no way to guarantee that Mary Ann will not fall and be hurt.  What this does is simply add to the practical tools for creating as safe an environment as I can within the limits of available resources.  While we cannot control what happens, we do have some control.  This is another way to use what power I have to help create a safe environment for someone no longer able to keep herself safe.

The monitor I chose is a Summer Day and Night Color Flat Screen Video Monitoring System.  The model number is 02500.  It is available at Toys R Us, or Babies R Us.   If you want to check it out, the web site of the manufacturer is, http://www.summerinfant.com. There was also a monitor I checked on that has a smaller screen but has optional software that allows the monitor to be checked online.  That one is called a MOBI Bundle Monitoring System and Internet Kit.  The website at which I found it was http://www.ActiveForever.com.

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.

“Let me do it for you, Mary Ann, we are running out of time.”   “I’ll take that to the kitchen for you. ”  “What are you getting up to get?  I’ll get it for you.”

Someone made the comment to me that when Caregiver’s take over full time care of their Loved One, the Loved One’s ability to take care of him/herself tends to decline.  I don’t remember who said it.  I don’t know if the person who said it had any formal knowledge to validate the comment.  I just know that my own experience seems to allow the possibility that the observation was correct.

I feel responsible for Mary Ann’s well-being.  I am taking care of her.  I need to do for her what she cannot do for herself.  I am here to determine what she needs and wants and then see to it that she gets it.  She is virtually helpless to do even the most basic things.  I am her arms and legs.   My job is to figure out what she wants or needs when she is having trouble figuring that out for herself.  She has a right to have the highest quality of life that the Parkinson’s will allow. 

Caregivers are committed to take care of their Loved Ones.  The question is, can they do too much for their Loved Ones and do more harm than good in the process?  In other arenas, the term for helping too much is “enabling.”  Is it possible that in all our good intentions we may very well be doing less good than we thought? 

A less comfortable question is, do we sometimes take over tasks from our Loved Ones more for our own sake than their sake?  Are some of our generous acts of service rooted more in our impatience than their need?

Those are very tough questions quite reluctant to produce easy answers.  Mary Ann would love to be back in the kitchen.  There are knives there, very sharp knives.  The Cutco knives she purchased from a traveling salesman some time before we were married forty-three years ago, have recently been sent back to the company for sharpening.  A broken blade was replaced, as were the handles, and they were honed until razor sharp.   (By the way, all that was done only for the cost of shipping — the salesman was not lying.)  Those knives could cut to the bone in a fraction of a second.  When Mary Ann’s basic Parkinson’s medication kicks in, she has dramatic dyskinetic movements, arms waving around with involuntary muscle activity.  She falls easily.  Armed with knives she could easily do major damage to herself and anyone else within reach.  Hot pans with oil or water in them are equally dangerous in dyskinetic hands. 

The easiest solution is for her not to participate in any way in the food preparation process.  That is pretty much what has come to be.  It is much less stressful for me if she stays in her chair in the living room while I do whatever needs to be done.  That solution is the easiest one for me but not necessarily the best for her.  My need for her safety is one part of this solution, but another part is my seeking to avoid the stress of helping her do whatever part of the preparation process she can, while I am trying to get the rest of the preparation tasks done.  Our solution is easier for me but does not necessarily increase the quality of her life. 

At our last visit to the Cardiologist I asked about an increase in number and intensity of Mary Ann’s episodes of labored breathing.  One part of the answer from the Cardiologist was that her inactivity has diminished her muscle tone. 

Here is the major area of concern from my perspective.  Now that I am retired and at home with her all day long every day, I am right there, every time she stands up to go somewhere.   I ask where she is going and offer to get for her whatever it is she was going to get.   If she gets up to walk when I am not able to see her, when I do see that she is up and on the loose, I move as quickly as I can to offer her an elbow, or put my hand on the gait belt. 

One negative effect of my presence is that her freedom of movement is more limited.  Another negative effect is that she gets less exercise while I am so attentive.  Her muscle tone diminishes and the stress on her artery-blocked heart increases.  It takes less and less activity to trigger the labored breathing. 

The problem for me is that I am the one who picks her up when she falls, and I have seen again and again how close she has come to doing major damage to herself.  She has fallen and cut herself, resulting in a couple of trips to the Emergency Room to check for major damage and stop the bleeding.  I have seen her start to crumple and then lose consciousness for anywhere from a minute or so to ten minutes.  I have hurt my back trying to hold her up or get her up, putting at risk my ability to continue to care for her. 

How much help is too much help?  

Whenever we have any time pressure, or my impatience kicks in, I do little tasks that she might be able to do if she was allowed to do them at her pace rather than mine. 

When is the help actually more for the sake of the Caregiver than the one receiving the care?

Sometimes I am so available, that rather than doing a task herself, a task she could do, she lets me, asks me to do it.

When is help no longer help, but enabling behavior that slowly takes away the ability to do the task from the one for whom you are caring?

Caregivers can care too much.   We can do too much.  We can indulge our own impatience and steal abilities from the one we love. 

The challenge is to find the location of the place in between too much help and too little help.  If nothing else, asking the question, “Should I do it or let her do it,” allows the possibility of finding that place.

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.