Practical Tools for Coping

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May 20, 2009

Caregivers: Information Overload — Or Not

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , |
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There was a four night special on Alzheimer’s Dementia on HBO about a week ago.  A number of those who are in the online group for casegiving spouses of those with Lewy Body Dementia had no interest in watching the series.  Why?

We don’t subscribe to HBO (too tight to pay for premium channels), so it was not an option for us.  I don’t know whether or not I would have watched it if I could.

Especially when I was in the thick of ministry in a demanding parish, I had no interest in watching soap operas or reality television shows.  One reason was that I experienced on a surprisingly routine basis drama in people’s lives that matched or exceeded what was portrayed in the television stories.

One of the characteristics of the pastoral ministry is that due to its nature as a helping role and the concomitant vow of confidentiality, people often revealed what might be called their “dirty laundry.”  Sometimes they confessed their darkest side in search of forgiveness.  Often they revealed the worst of their family secrets. There are many revelations that I will take to my grave.

It was hardest to deal with revealed secrets that I was bound to keep even when interacting with other family members who were not privy to whatever it was.  I heard things that would not have made the latest soap opera because writers would have considered them too hard for the audience to believe.  You know those things we assume could never really happen, at least not to anyone we know?  They are happening in the lives of people all around you, people you could never have imagined could be involved in such behavior.

Having that window to the reality in which I was living, I neither needed nor wanted to immerse myself in some fiction attempting to provide me with a vicarious experience of the dramatic.  Real life provided enough drama.

The reason those online Caregivers were not interested in seeing a special on Alzheimer’s Dementia (AD), is that they are living the drama themselves.  For that group it is Lewy Body Dementia (LBD), which is different from AD in some respects.  The confusion and memory problems and hallucinations come and go, sometimes in minutes for those with LBD.  There may be a decline that is followed by a return to  former alertness.  There is a greater sensitivity to a number of medications, sometimes the very medications needed to control some of the symptoms of the disease.  Parkinson’s or Parkinsonism is often a part of the LBD experience.  There are very many characteristics that AD and LBD have in common.

Those who live with AD or LBD or PDD (Parkinson’s Disease Dementia – a Lewy Body Dementia that emerges after Parkinson’s has already been diagnosed), do not necessarily want to watch their struggle on television.  If anything, they want television to provide them some escape from Dementia World.

I have a thirst for information that might have led me to watch the Alzheimer’s Project on HBO, if we had HBO.  Information helps me objectify what we are going through.  Information takes away some of the apprehension because it demystifies the Disease.  It reduces its power to intimidate.  It becomes more of a matter of fact part of our lives, less able to blind side us with surprise attack of some sort. Of course anything can happen at any time, without warning, but at least we know what some of those “anythings” are.

It is fine to cut out articles and inform Caregivers of programs about the disease their Loved One is battling.  Just don’t be offended if they don’t read it or watch it.  They may be on information overload just dealing first hand with the disease.  They may, as do I, find the information a helpful tool for bringing the disease down to size.

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.

 

May 18, 2009

Caregiver’s Day Off!

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

 

May 15, 2009

Caregivers Appreciate the Chance to Give Care!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , |
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Maria’s George died this evening.  Others are not far behind.  It is such a privilege to read the posts of those in the last days and hours of life with their Loved Ones.  The Lewy Body Dementia Spouses’ group is candid about what they are going through whatever it may be at any given time.  It is a help to the rest of us to hear straight talk with all the details from others at different places in the journey with Lewy Body Dementia.

Each death that is recounted brings lots of responses from others.  There are many celebrations that the battle is over and the Loved One is finally at peace. There is relief that the Caregiver Spouse is also free from the clutches of the Dementia.  There are from the same people words revealing a deep sadness that the time of Caregiving is over.  One spouse giving care during those last days and hours wished she could just keep ministering to her husband without ever having to give him up.

As that fond wish to continue to care resonated in my thinking, I realized just how true some words were that were spoken by a friend when I retired.  He has retired and cares for his wife who has had ALS for many years.  He observed what an honor it is to be able to become a full time Caregiver.

As so many in the online group have died in the past months with more moving into their end times, I recognize just what a privilege and honor it is to have time with Mary Ann.

We spent a good portion of the day driving in the car.  We headed out to pick up a friend and then drove to the studio of our favorite potter.  The studio is in a tiny Kansas town about an hour away.  We picked up a couple of pieces while we were there.  One was a chili bowl with a handle and high sides.  Our hope is that the high sides will keep the cheerios from sliding out of the bowl as Mary Ann chases them with the thick-handled spoon.  We left with his artisans a plastic plate we had purchased to make it easier for Mary Ann to push food on the fork or spoon without the food slipping off the edge of the plate.  Our request is that he make a ceramic plate shaped like the plastic sample painted with glazes matching a couple of other pieces he has done.  There is no reason that we need to leave aesthetic considerations behind when we get adaptive devices to make Mary Ann’s life a little easier.

It is her birthday tomorrow.  The bowl will be her birthday gift — surprise, surprise! We have come to the age at which birthdays diminish dramatically in interest.  At least that is how I rationalize my lack of creativity in celebrating them.

We drove through an area of the Flint Hills.  The green of the spring grass, recently watered by rain showers, glistening in the sun was breathtaking.  Birds were flying, cattle grazing, van passengers soaking it all in.

As I think about those who have lost the ones for whom they have been caring, i realize more vividly than ever just how great it is to have this time.  When I am mid-task, doing something I don’t particularly enjoy, irritated at Mary Ann because she seems to be fighting against the very thing I am doing to help, it is easy to weary of it all and wish it was over.  I am grateful that it is not over.  I am grateful that we can sit at Panera’s and have a Bear Claw and a cup of coffee.

We have had a couple of tough nights in the last week or so.  Those are the nights when she is restless, needing some sort of assistance two or three times during every hour of the night.  It is not so much the tiring night that is the problem but the two days of increased hallucinations and confusion and long daytime naps that inevitably follow.  Tonight again, there was concern about the comings and goings of the Thursday people. We went through the skin Cancer removal, subsequent fall and repair of the wound, all in the last ten days or so.  Mary Ann has struggled more with spatial issues and dexterity resulting in her need for more help in getting food of the plate and into her mouth.

In this same last week we have had some very good days, eating out with some new friends, running errands, spending time at the library, having ice cream treats, going to see the Star Trek movie, enjoying a helpful Parkinson’s Support Group meeting, experiencing our own little meals on wheels program as  couple of great meals were brought over, a melt-in-your-mouth four layered chocolate cake with fluffy sweet white frosting covered with shredded coconut being delivered.

What I intuitively recognized in those thirteen seconds as we sat at McFarland’s restaurant September before last is absolutely true.  We needed time together while we have it.  As others spend their last days and hours concluding their journey together, it becomes crystal clear.  I have an honor, the honor of being Caregiver to Mary Ann.  I am grateful not to have missed the chance.

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.

 

May 13, 2009

Caregiver: When Shall I Talk for Her?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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Mary Ann barely talks, and I can’t seem to stop talking.  I have just written two posts titled “Who am I” chapters one and two.  When does Mary Ann get to say who she is?

There are different stages in the journey of a Caregiver and CareReceiver team.  Some are at a stage in which each can speak for him or herself.  Some are in the stage in which the CareReceiver can no longer speak at all.  We are somewhere in between those stages, a little closer to the latter than the former.

Mary Ann has never been very talkative.  She has been a very private person.  She was never one to spill her guts to others.  Mind you, when she spoke, it was always pretty direct. 

Now, it is very difficult for her to get thoughts into words.  It sometimes takes so long that she doesn’t get a chance to get those thoughts out before the conversation has moved to the next subject.  Sometimes she seems not to be able to follow the conversation.  Other times, her words when they do come reveal that she is tracking the conversation perfectly and just needs time to get a word in edgewise.  When she does speak it is often so softly that what she says is lost to the rest in the conversation. 

I want Mary Ann to be as fully present as she can be at all times.  I want her to have a chance to be heard, to be listened to.   I want people to discover who she is.  The challenge for me is determining when to speak for her and when to just shut up. 

More times than I can count, when people new to us have interacted with us they have looked at me and referred to Mary Ann in the third person.  “How is she doing?”  “Does she want this or that?”  When that happens, I usually move my body in a way that brings her into the conversation’s physical space, and I relay the question to her.  I don’t snap back with “Why don’t you ask her?”  Also, I don’t want to force the issue, since sometimes she is not able or does not want to respond.   What I do know is that if people refer to her in the third person when she is sitting right there, it feels as they have concluded that she is not actually there any more.  It is as if at that moment, were she to ask, “who am I,” the answer would be “Nobody!”  She is Somebody, somebody special.  I want people to know that. 

Another odd little quirk when folks do talk to her, is that some raise their voice as if she has a hearing problem.  On occasion someone will put his/her face right in front of hers and shout.  Some folks use a sort of baby talk, as if they were talking to a toddler.  The tone sometimes sounds as if it is an attempt to be sweet to her.  Without intending to do so, actually it seems to diminish her presence as a whole person worthy of adult respect — as if she is a poor handicapped little person in need of them descending to her level.  It is hard to watch and listen when she is approached in a way that seems to make her something less than she is.  I am not confrontational with people when they talk in a way that feels inappropriate, since they are doing their best to be kind.  I suspect that I need to be more assertive and find a way to help them understand that it would be better to talk with her the same way they would talk with any other adult. 

Again, one of my greatest challenges in the role of Caregiver/Husband is to determine when Mary Ann wants me to talk for her, and when she wants to talk for herself.   I try to deal with that challenge directly by asking her if she wants me to talk or not.   Sometimes she will answer me when I ask that question, but sometimes the words just won’t come. 

One of the times it is most difficult to be sure I am talking enough for her but not too much is at the doctor’s office.  The doctors generally handle this pretty well.  We have been going to most of them for a long time.  When they ask her a direct question, if she can, she tries to answer.  It is especially hard when her answer does not at all reflect what I think would be a more accurate response.  Sometimes I can jump into the conversation and address Mary Ann, reminding her of the specifics that would suggest her first answer not to reflect her actual experience. 

At the doctor’s office especially, when I do speak for her, I immediately ask her if what I just said reflects accurately what she understands to be so.  As a Caregiver, I have to be especially careful that I don’t project on to her my perceptions and feelings and conclusions. 

To be able to determine accurately when to speak for her and when not to, to be able when I do speak for her to reflect accurately what she is thinking and feeling, as a Caregiver, I need to listen very carefully to what she says about what is going on with her.  I need to to ask her questions such as, how does it feel to you when this or that happens, when I say or do one thing or another. 

All the listening skills I have tried to develop over the years of counseling are important skills to apply to communicating with Mary Ann.  I have to look for non-verbals, read lips, listen for code words that give a clue to what she is feeling.  Then I need to do everything in my power to elicit words from Mary Ann, especially those times she is most alert  and connected.  I need to be quiet long enough to give her a chance to form the thoughts and get them into words. 

When shall I talk for her?  When I have listened carefully to determine what she is thinking and feeling, when I have been quiet and patient long enough to allow her to speak if she is able and willing, then it is my job to bring her presence into whatever the conversation so that those with whom we are conversing recognize and affirm her identity as a whole person.  She is Somebody, somebody special!

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.

 

May 10, 2009

Caregivers: Audio-Visual Monitor Helps

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

 

May 6, 2009

A Caregiver’s Fear Realized – Hurt in a Fall

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , , |
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One of my fears about falling was realized this afternoon.  We live in a very narrow margin of functionality.  We slipped outside the margin for a time today.  The result is an apparent need to change a pattern that has been allowing both Mary Ann and me moments of freedom from being tethered to each other. 

Yesterday morning was the procedure to remove another in a series of Basal Cell Cancers that have been appearing on Mary Ann’s back and upper chest.  The procedure was done in the Dermatologist’s office.  We like him.  He seems to be very committed to the field and always upgrading his knowledge and skills. 

His office, however, is right from the 1950’s.  It is very small, a narrow hallway leading to tiny rooms with pocket doors, bathrooms barely able to hold one person standing up, let alone somone in a wheel chair.  There is a nice flat screen television in the waiting room, among the old furniture.  The equipment doesn’t always work, but it is adequate, and procedures are done well.

The spot on the back of her shoulder was not large.  To guarantee that the perimeter of the patch of skin removed was clear of Cancer cells, a pretty large area of flesh was removed.  Each time a procedure has been done, I have watched each step.  The rooms are very small, so I always have an unobstructed view. 

It is always a surprise to me to see the size of the string of stitches when the the wound has been sutured.  In this case, it was at least a couple of inches long.  He sutures the lower edge of the epithelium, deep in the hole left after the circle of skin is removed.  That is a very tedious process, including a number of steps with each of the many stitches.  Then comes the suturing of the surface edges.  The round opening is pulled together into a line, not exactly straight, but close.  Again each stitch takes multiple steps. 

He made a point of closing the wound tightly since Mary Ann takes Plavix and aspirin.  The doctor observed that Plavix actually sometimes gives surgeons more trouble that Coumadin, a much more powerful blood thinner.  He wanted to be sure there would be no problem with bleeding. 

The day went well after the surgery.  Even though we had been given suggestions for dealing with pain, Mary Ann reported no pain.  The doctor called last evening to ask how she was doing.   There were no problems. 

Today was a good day in many ways.  Mary Ann went to her weekly small group meeting at church.  I was basking in the possibility of a water problem in our back yard turning into a beautiful garden and water feature.  Most importantly, some gossip came my way — good gossip.  The sadly empty building that used to be our Baskin-Robbins ice cream place — yes, I said ours, by squatter’s rights — may eventually open again. 

After lunch, I actually managed to do some cooking using a very complicated recipe.  Here it is:  Brown one large package of country style boneless pork ribs in a large frying pan, then transfer them to a crock pot, add a bottle of KC Masterpiece barbecue sauce and cook them forever.  The recipe is came to us from Larry and Jolene, when they brought over a huge and sumptuous meal.  My creative addition to the recipe is to open a couple of cans of beans and add them to the crockpot a half hour or so before eating.  Enough of the culinary diversion.

Mary Ann wanted a snack.  We had some ice cream.  She ate part of it and decided there was something in it.  I find those hallucinations to be especially annoying, since once they appear, the only alternative is to throw away perfectly good food for no good reason.   An hour later, Mary Ann popped up out of her chair, and as I suspected had decided she needed another snack.  I couldn’t pass up an comment on the last snack’s fate, and then I headed for the kitchen to see what I could find for her. 

I left her standing beside the transfer chair.  As soon as I got to the kitchen, I heard the familiar thump of her falling.  It was in an open carpeted area.  She hit nothing that might hurt her.  Normally, such a fall is just routine.  Not this time.  She landed directly on the shoulder that had been stitched up yesterday morning after the surgery on the skin Cancer. 

I knew it would be so, and as soon as I got her to the bedroom to look at it, my fear was confirmed.  The blood was running.  I headed for the case we have filled with first aid supplies we have gathered after past experiences like this.  I got a thick surgical pad and some tape to try to contain the bleeding until we could get back to the doctor.  The tape I had  (too narrow) combined with the awkward location of the incision resulted in blood seeping through to her clothing in spite of my best efforts. 

 I called the doctor’s office and was advised to do the obvious, bring her in.  The doctor had to send home a patient who had been stuck and prepped for a procedure because Mary Ann’s wound could not wait.  She had done something he had never seen before in his career (started medical school forty years ago).  She had torn open the two inch stream of stitches on the top and deep within the wound.   He had to start over completely.

The afternoon grew in complexity as it went on.  The doctor had sent home the other patient prepped for a procedure.  As he and two assistants were doing a cluster of preparatory tasks for Mary Ann’s repair, the doctor’s preschool-aged grandson came running down the hall.  He poked his head in.  He was not put off at all by what he saw.  Obviously he had wandered in on procedures before.  What added to a sort of chaotic tone that was developing was that the little boy’s mother. the doctor’s daughter-in-law came down the hall holding a cloth to her forehead.  She had run into a door and was also in need of stitches. 

The doctor left Mary Ann to attend to his daughter-in-law.   The assistants continued the prep, obviously a little unsure of how to proceed.  During that time the two assistants were sharing with each other their concern that they both had to leave and could not stay much longer.  One  had an appointment to take her two year old horse to be broken.  The other had to pick up her preschooler (who happened to be attending the preschool at the church from which I retired last summer). 

The doctor had done some preliminary work on his daughter-in-law so that she could wait until he was done with Mary Ann for her stitches.  When he returned, the imminent departure of his two assistants became clear.  The word went out to the office manager who had been with him for much of his practice to scrub up so that she could take over when the assistant’s left. 

Through all this, every time we checked with Mary Ann, she said she was fine.  She lay a long time on that table as he redid the entire suturing process.  It was long and tedious.  As time went by we all began to appreciate the craziness of how the afternoon was going.  They all commented on how uneventful the day had been up until we injected some drama into their day.  I told them that if it was okay with them, we would opt out of any future need for excitement being added to their day. 

The moment, Mary Ann is in bed.  As a her Caregiver, I have a dilemma.  First of all, I bear responsibility for what happened.  Had I been there with my hand on her gait belt, I could have prevented the fall.  Secondly, I was not calm and reassuring after it happened.  Instead, my frustration with the situation spewed out of my mouth.  Gratefully, I moved quickly and got done what needed to be done.  My dilemma is the implication this has for how I go about my Caregiving task. 

I have felt free to be in the kitchen for a time, go down the hall to my office to be at the computer for short times during the day,  go to the end of the block to get the mail.   At least until the stitches heal fully, this episode suggests that freedom no longer to be an option.  Mary Ann simply cannot keep from getting up and going.  I need to be there immediately to offer an elbow or put my hand on the gait belt. 

Tomorrow, I need to follow through on getting an audio-visual monitor from Babies R Us, or wherever I can find one.  If I can keep the receiver with me wherever I am in the house, maybe Mary Ann and I will not need to be joined at the hip every minute of every day.  That much closeness would all but assure both of us going completely crazy.   It would not be a pretty sight.

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.

 

May 5, 2009

Hot Flashes come with Parkinson’s Disease

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , |
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I just closed the back door, the window in the dining room, the front door, the garage door, and the door between the house and the garage.  From late fall through early spring, this is pretty much a daily routine.  Yes, even in the dead of winter (which is not all that big a deal in Kansas), the doors and windows are opened each evening around supper time. 

During the first fifteen years of Mary Ann’s Parkinson’s diagnosis, no one told us about the hot flashes.  When I asked about them, there was only a blank stare.  Mary Ann went through all the usual hormone treatments — multiple doses.  Nothing worked.  Finally, she stopped taking any hormone therapy.  It just made no difference. 

Finally in just the last few years we have heard sweats listed among the non-motor symptoms of Parkinson’s.  After a time of feeling irritated that no one had mentioned it before and lamenting all the misguided efforts at trying to treat them, we were relieved to just to know that it is part of the Parkinson’s gifts to Mary Ann.  They are no easier for her to endure, but at least we are no longer wasting our time looking in all the wrong places, trying to find some elusive solution to the problem.

I had heard about hot flashes long before the Parkinson’s.  Since Mary Ann was diagnosed so early in life (45), she went through the normal menopausal hot flashes.  The hot flashes, the sweats, continued long after menopause had completed its transition.  They have never ceased.  As I have felt the heat and changed soaked clothes and wiped the sweat running down her neck, I have come to recognize hot flashes to be much more than a minor inconvenience.  When they come in full intensity, Mary Ann looks as if she will burst into flames any moment.  She radiates heat that can be felt from inches away, as if she were some sort of biological space heater. 

There was a time in the progression of the Parkinson’s when if we had been asked, we would have responded that the hot flashes were the hardest part of the disease to endure.   

When the almost daily hot flashes come on, I need to respond quickly.  If Mary Ann happens to have on a long-sleeved top, it must come off immediately.  She is usually dyskinetic at the time, so changing clothes is no small matter.  Arms and legs are twisting this way and that.  After clothes are changed, the back door, the windows, the front door, the door to the garage and the garage door must be thrown open.  The colder and windier it is outside, the better.  Sometimes I get a wet wash cloth to put on the back of her neck.  Occasionally, she has ended up in the shower trying to cool down. 

As you might guess, summers in Kansas can be pretty tough at hot flash time.  I recognize that the general wisdom is to keep the thermostat no lower than 76 degrees when the AC is on, preferably 78 or 80.  Ours has to go down to about 72 until it feels like a refrigerator when the hot flashes kick in.  The AC works far too slowly to give much relief.  Eventually, either that round of sweats ends or the AC takes the edge off so that it is at least bearable.  Oddly, at other times, Mary Ann can be very cold, hands frigid. 

As a Caregiver, not only do I need to be ready to move quickly to cool her down when the hot flashes come, I need to have nearby appropriate layers for myself.  When it is in the twenties outside with a wind chill in the teens, I need to add layers to keep warm. 

Some of our most harrowing moments have been times that a hot flash has hit while we were driving.   While traveling the Interstate at 75mph (maybe a little more) trying to reach the passenger seat in a van with front seats separated by a console, to take a jacket off a seatbelted passenger who is broiling in her own sweat is a terrifying experience. 

It is not only Parkinsonians who have to deal with the sweats.  Many of those who are in the Spouses of those with Lewy Body Dementia online group talk about the sweats, asking if anyone has found some way to control them.  To my knowledge, no one has come up with a solution, even by asking his/her Neurologist.  

The sweats, the hot flashes, are just part of the deal.   They come after the Parkinson’s has been with the family for some years.  As far as I know, no one has pinned down the specific cause of the hot flashes.  Very many of the problems that come with Parkinson’s Disease, Parkinson’s Disease Dementia and Lewy Body Dementia do not reveal their etiology, they are reluctant to tell the story of their origins.  So many of the most troubling problems have their roots in both the disease and the medications used to treat the disease. 

Even the most expert in Parkinson’s Disease will admit that many of the motor and non-motor symptoms seem to emerge from some elusive combination of the disease process and long term side effects of the medications.  Without knowing a very specific cause, it is pretty much impossible to find a treatment to control those symptoms. 

As with so many of the troublesome additions Parkinson’s has brought into our lives, the sweats, the hot flashes are here to stay.  They refuse to be diminished by any treatment.  We are left to adapt the environment to accommodate their presence.  So, we open doors and windows when that will work, and we turn the AC down when outside air seems hot enough to initiate combustion. 

Hot flashes or sweats often do come at some point in the progression of Parkinson’s Disease.  Somehow knowing that to be so makes it easier to accept them and spend the limited time and energy we have figuring out how to adapt our environment quickly to diminish the discomfort those hot flashes bring. 

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.

 

May 1, 2009

Caregivers: Is the TV Friend or Foe?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , , |
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Yes!!  As the world gets smaller for those of us who must spend most of our time at home, the television becomes a very powerful presence in our lives.

The television has always been an important part of Mary Ann’s day.  Most days it is turned on when she gets up, and the one in the bedroom is still on when she goes to sleep.  An odd little piece of Mary Ann’s history seems to me to play into the role television has for Mary Ann.  Her mother turned the radio on in the morning when she got up, and it stayed on all day. It was company for her.

One of the things that scared me most about the prospect of retiring for full time Caregiving was the prospect of never being able to get away from the television.  We live in a town home with 1150 square feet on the main floor.  There is nowhere to hide.  Even when I go to the front room that serves as my home office and close the door, I have to turn on the monitor so that I can hear her if she needs my help.  The sound of the television follows me everywhere.

The problem is complicated by the fact that I am easily distracted.  I can’t read or do anything taking much mental effort while the dialog of a television program is audible.  Gratefully, I am able to focus on writing a blog post that is meaningful to me while the volume on the monitor is fairly low.  Unfortunately, the result of the low volume is that sometimes it is the thump of her falling in the bedroom that gets my attention and sends me running to help.

One of my most hated jobs has emerged as Mary Ann’s dexterity has diminished.  We are on our fourth or fifth remote control trying to find one that Mary Ann can still manage. I am now called on (I usually offer) to use the remote for her to try to find something she will settle on.  Without fail, we end up in what I call commercial hell.  There are commercials on every channel, lasting an eternity, one after another as we try to discover what the program is, let alone if it is something she wants to watch.  After making it through all fifty (or whatever the number is) channels, often there is nothing that has caught her fancy, so we start over.

How is the television Friend?  For someone who can no longer do any of the things that brought her joy, the television is a profound blessing.  Mary Ann can no longer quilt, or write notes to people, or read books or do wash or cook or clean or go to a job outside the home, or go outdoors and mess with the flowers or make herself a sandwich.  The television provides stimulation as she watches programs that interest her.

A benefit for me is that when she is engaged in a television program she is enjoying, I have time to do something else with less vulnerability to interruption.  I can step to the front room and sit at the computer.  I can make a phone call.  I can walk outside the house for a moment.

Let me make an admission that is embarrassing to a guy who grew up in the time when “a man’s home was his castle.”  Mary Ann runs the remote.  She always has.  In our house, I knew it, the kids knew it, the grandchildren now know it, Mary Ann is the boss of the television.  I suspect that admission will void any gift cards to Home Depot, Lowe’s, or Ace Hardware (except to buy flowers).  (I still refuse to enter a fabric store unless it is an emergency.)

The result of what I have just shared is that not only is the television on all day, but the programs on it are of Mary Ann’s choosing.  It is no wonder that whenever there is a volunteer at the house, I tend to seek quiet, secluded spots to look for birds and other wildlife, or just soak in the scenery.

How is the television Foe?  While it is a blessing to her in an important way, it is a curse at the same time.  As I have already said, it is oppressive to me that to have no little respite from it.  I could probably recite the dialog on most of the Doctor House episodes, the episodes of NCIS and most of the Law and Order series.  I have come to loathe the Saturday Spaghetti Westerns.

My understanding is that there is evidence that what is taken in, especially just before going to bed can have impact on a person’s feelings and general world view. I do not know that to be so.  I may have misunderstood or confused what has been said about that.  I do know that watching the horrible things people can do to one another portrayed in graphic detail in words and visuals is depressing to me.

There are some in the online group of spouses of those suffering from Lewy Body Dementia who have talked about the impact of television.  Some have said that their spouses become agitated with certain programs.  One mentioned that sitcoms seemed to be less troublesome for her Loved One.

What streams before the eyes on a constant basis has to have some effect on how a person feels, how he/she views the world.  When I was serving a the Pastor of a congregation in Oklahoma City, a very active, long term member of the congregation was killed in the bombing of the Murrah building there.  Her name was Lee.  As we gathered with her husband, Roy, at their house, waiting for news of her fate, I remember the role of the television.  We all had our eyes glued to it, we hung on every word the reporters and announcers spoke.

The most freeing piece of information came to Roy through a phone call from the HUD representative.  Lee worked in the HUD office.  The information was the assurance that any news of Lee’s fate would come first via phone to Roy, before it would be announced on television.  Roy and those gathered with him no longer had to remain glued to the television.

It didn’t take me long in that situation to realize that the television reporting hour by hour, day by day, could create a terrifying view of reality in the minds of those who were homebound, for whom the television was a constant companion.  I asked folks in the congregation to phone homebound friends and neighbors to reassure them.

The solution seemed to me to be getting the homebound out of the house, even if it was just to stand outside and look around.  Then they could see with their very own eyes that reality had not been shattered completely.  The houses around them were still there.  The sidewalks and streets, the trees and flowers and birds and squirrels were still as they had been.

For the most part what is seen on television is not real.  Reality television programs have been set up for their entertainment value — they are not real.  Even the news is a gathering of sensational stories framed in ways that are as dramatic as possible to keep viewers coming back to that station.  The antidote to what is not real is what is real.

It is important to get away from the television and find a way to interact with live people.   The people on television are acting, pretending, entertaining.  The troubled economy is real, the swine flu is real, but the world has not crumbled into useless rubble.  Interacting with real people allows the possibility of making good decisions about doing what you can actually do to help protect your savings or increase the chances of your avoiding catching the flu.

Used appropriately, television can be a helpful tool in caring for someone whose life has been drastically altered by a debilitating disease.  It is a tool like a knife.  It is very useful, but also dangerous.  As a window through which reality is experienced, it can increase the fears of someone who is already afraid of what is coming due to their disease.  It needs not to be the only window.

For some whose Loved Ones are no longer able to get out at all, or are overstimulated by going out in public, finding music to listen to, television programs that lift their spirits, reading to them, singing to them or with them, reminiscing about times gone by with them (or to them if they are no longer verbal), inviting an old friend over, offer some options that might work with them.

Yes, the television is friend and foe.  It is not a healthy substitute for reality, real people, real relationships.  It is a tool that needs to be used carefully.

Now I need to go and find out if Tony and Agent David have traced down the information Gibbs needs to solve the murders.  (I already know, I have seen it at least twelve times!)

P.S. In case you are wondering what a fabric store emergency might be, it is this: you take your suit coat to a sewing shop to have a button sewn on only to be sent to the fabric store to find replacements that match, since you lost the button that came off.  It was a terrifying experience!  It is a wonder that I lived to tell about it!

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 19, 2009

Caregiver/Receiver Travel Preparations

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , |
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Traveling fools that we are, we are heading out again tomorrow morning.  Having just returned from Kentucky last Monday, the preparations seem to be going more smoothly than last time.

This time we are heading for the most beautiful Bed and Breakfast that could be imagined.  There are ten rooms (one especially for handicapped), all of them facing a beautiful arm of Lake Hamilton in Hot Springs, Arkansas.  Each room has its own patio or balcony.  There is a library, a reading room (both with fireplaces), a heated and cooled sun porch with games and puzzles and areas for conversation.  The decor is elegant without being pretentious.  There are many watercolors by local artists, one artist in particular.  The quality of the art is impeccable.  There is a garden that spills down the terrace toward the lake.  It is laced with paths and a stream divided by waterfalls, the water from a wonderfully gurgling fountain at the edge of the patio outside the dining room.  The garden is filled with trees and blooming shrubs and Azaleas.

The Owners and Staff are welcoming and engaging.  The breakfast is, of course, many courses, all tasty and what I would call comfortable gourmet.  I just made up that descriptor, but it is the only way of saying it that makes sense to me.  The 4:00pm wine and cheese and freshly baked cookies, sometimes fruit, is a relaxed time for conversation around the serving table or for eating on the patio listening to the fountain and the birds that visit the multiple feeders.  By the way Chocolate Wednesday is a special treat!

What I just described I am remembering from a visit last October.  That trip was a retirement gift from the Congregation that has meant so much to us in these last dozen or so years.  Since one of the owners of the Bed and Breakfast is an active Pastor, there are special rates for those of us in the business, making this trip possible for a pastor living on a pension.  This B&B is called Lookout Point – Lakeside Inn, www.lookoutpointinn.com/

I am excited about this trip.  Part of the reality of Caregiving is that anything can happen in the next few days as we make this trip.  Tomorrow something may emerge that makes it impossible to go.  We may have any number of problems as we travel.  None of that dampens my enthusiasm.  I cannot know what will happen, so I will enjoy what I can, while I can.  Mary Ann enjoyed our last visit and is motivated to make it work.

As always the preparations are many.  Choosing clothes to take along is a special challenge.  As is the case each morning, I gather as many options for clothing as I can hold and carry them to her as she sits on the edge of the bed.  Often it takes what seems to be an interminable amount of time for her to work back and forth through the clothes as the hangers dig into my fingers.  Deciding on clothes for six days of travel is an exhausting experience for the one holding the clothes.

There are pills to be prepared and put in the plastic seven day, four section each day, pill holder.  Then the bottles of pills need to be along in case anything happens to the ones in the daily container.  There are meds for the two skin cancers that have just been removed so that they can be treated properly to enhance the healing process.  One takes Polysporin and a band-aid each day, the other needs to be dabbed with Peroxide three or four times a day.  The Exelon patches need to come along. The black case with liquid band-aids to deal with the Plavix thinned blood if there is a cut comes along.  There are straws and bandages and wipes and adhesive tape, boxes and tubes and containers filled with all sorts of things that have been needed at one time or another in the past.  All are contained in that black case.

There is the booklet with all the medical information including a list of medications, insurance information, doctors names and phone numbers, her living will.  There are snacks to be gathered for the trip.  There are paper towels for the inevitable spills as we travel.  Both wheel chair and transfer chairs will come along.  We may add the bedside commode if there is room. Those who are in the stage of life that includes young children know how hard it is to gather all that is needed so that the odds of the trip going well are increased.  There are never any guarantees about how it will go, no matter how many preparations are made.

Every time we do this, the usual questions come to mind again.  Should we be traveling away from the security of home and familiar medical resources?  Is it more trouble than it is worth?  What if something happens!!

I guess we have decided that if something happens, it will happen.  We can’t control that.  We can sit at home and wait for it to happen so that if it does, we will be close to the familiar.  We are simply choosing not to sit and wait.  Our reasoning is obvious.  We have what appears to be a limited time remaining with enough mobility to even attempt traveling.  We will do it while we can and not do it when we can’t.  We think we still can, so off we go!

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 15, 2009

Caregivers Feel Powerless

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , |
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We made it!!!  Last evening we returned from Kentucky traveling 10.5 hours — under overcast skies dropping periodic showers on us as we traveled — all 10.5 hours.  Then, two miles from our home, the sun broke through.   Traveling can be wonderful, thrilling, entertaining, full of comfort with family that is loved very much, and still, coming home feels good. 

Then there was the mail to be opened.  Two pieces of mail in particular dampened my enthusiasm to be home more than the showers had dampened our travel that day.   Both were Caregiver irritants.  The first was another in the seemingly endless array of medical insurance claims denied because someone had a wrong code or a wrong insurance ID number or hadn’t communicated information in the left hand to the right hand or because this Caregiver didn’t get the right information to the right person at the right time.

The second piece of mail that dampened my spirits was what appeared to be a summons for Mary Ann to serve on a jury.  The form to be filled out looked as if someone had printed some sort of printer test page with bar codes and fonts both tiny and bold. 

Now, I am a reasonably intelligent person.  I graduated eighth out of three hundred twenty-five in my high school class.  I tied one other student with the highest numbers on my college entrance exams.  I got a 31 composite score on my ACT and a 34 (out of 36) on the quantitative portion of the test.  I spent eight years in college and seminary, learning to read Hebrew, Greek, Latin and German.  I went back to school and got a Doctor of Ministry degree after ten years of working.  Why am I so intimidated by health insurance forms and jury summons and keeping track of pills in their little plastic holders and making sure that prescriptions are obtained or renewed before the pills run out. 

Why is it that little things seem to have so much power to ruffle my feathers.  So the person who got my order for two pieces of white meat sent me home with a thigh and a wing instead of a breast and a wing.  I actually called and complained (got a free meal out of it).  Things that are of no account in the grand scheme of the universe seem so huge and frustrating.  I have dealt with tough issues hundreds of times over the years, helped families through major crises, worked through substantial budgets, been through crises myself more than once.  Why should I now be undone by chocolate squished in Mary Ann’s hands and on clothes that can easily be Spray and Washed. 

Whether it is verifiable scientifically or not, I am convinced that people have just so much coping capability.   As Caregivers, we live in a chaotic world in which things can change in moments.  We have absolutely nothing to say about what happens to us.  We can do everything it makes sense to do so that there will be a certain outcome.  We actually have no say in what outcome results.  Every time something happens that throws that truth in our face, every time events take an unforseen turn, we are forced to use up some of our coping skills. 

Any of us who have been caring for a Loved One for some time understands that we have pretty much nothing to say about what happens.  Parkinson’s in particular is unpredictable in how it will present itself and how it will proceed.  Lewy Body Dementia is especially insidious in that dramatic changes can take place for the better or for the worse (mostly the worse) at any time, at any pace.  Other diseases have different patterns but no less power to use up a Caregiver’s coping ability. 

So, what can we do in the face of the harsh reality that we are out of control, we are completely powerless to order our world?  We live in total chaos. 

If it is little things that can now undo us, since we have used up all our coping ability on the big things, how about trying to beat this powerlessness at its own game?  If little things can undo us, why not use little things to create some semblance of order in our lives?  Why not create little pockets of control in our lives to suggest to our insides that we actually can survive the chaos — we can refuse to give it the power to unravel us completely.

Here is how I fight the chaos, the feelings of powerlessness.  This will sound stupid and silly, but it helps me survive.  I clean the commode every morning.  I make the beds and fold the corners so that they will not trip Mary Ann when she walks around the foot of the bed.  I fold the chuk that was under the commode, move the clean commode to the foot of my bed.  I roll the lift from the living room where it spends the night into the bedroom to the foot of my bed.  I get Mary Ann’s pills which, every Saturday, I put in the little compartments in which they always go.  I set the pill timers.  I change Mary Ann’s night time pad (like Depends) for a day time pad (each holds a different quantity of liquid).  I get her dressed, velcro shoes for when we are out, making bathroom changes of pads go more quickly.  And so it goes. 

If we can’t control the big things, we can control some things.  When people came in struggling with mild depression (I referred those in deep depression), one suggestion I made was to make a list of just two or three simple things that they could easily do, tiny things.  I suggested making the list and checking off those silly little items when they were done.  Depression seems to come when we have the sensation that we are powerless to do anything about our situation.  My goal was to help them re-train their thinking, their gut, so that some small sense of control returned.

Most people who talked with me about problems that were overwhelming them heard the same suggestion.  Make a list of all the pieces of the problem that seems so overwhelming — usually there were multiple problems converging.  Then take the list and divide it into two lists. In one column, put the things you don’t have the power to control or change.  In the other column list the things that you can actually affect in some way.   The first list for those whose view of reality gives this weight, is the prayer list.  For those who don’t find that a meaningful option, it is the list of things to take off your plate of things to do.  Any energy spent on them is wasted.  If you had the power to change them you would have long ago.  Let them go! 

The second list is the “to do” list.  Take all the time and energy that has been wasted on things over which you have no control, get off your butt and do one of the things on the second list.  If it is too big to do, do something, anything, any part of the thing that is too big. 

Yes, I am a list maker.  Yes, I have put something on the list after I did it so that I could check it off.  Do whatever works for you to help you find some level of control in the face of things over which you have no control. 

Caregivers feel powerless because we are powerless — but not completely powerless.  Our job is to figure out what we can and can’t do, then do what we can and let go of what we can’t.  What is surpising to me is how often it turns out that the little things I could actually do did make a difference — more difference than I thought possible.  

 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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