June 8, 2009

Caregivers Need to Vent Frustrations.

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
[6] Comments 

Mary Ann and I have now had our fifteen minutes of fame.  The article on our situation, with picture and all, was published  in our local paper yesterday morning.  The fame has already faded.  Oh well.  Who wants to be plagued by the paparazzi anyway. 

At various times during the day today, I stopped by the computer to read  posts on the spouses of those with Lewy Body Dementia online support group.  Since there is an expectation of confidentiality in that group, I will use no names. 

One member of the group wrote a very graphic and painful post, venting a level of frustration she feared would shock all of us.  She revealed a depth of pain that is almost beyond description.  What drove her to write was not just a passing moment of feeling sorry for herself.  It is hard to imagine anyone going through the impossible dynamics of her circumstances and surviving. 

What is more frightening is that no one was shocked at her shocking vent.  They understood.  She just put into words feelings that many in the group experience.  What is frightening about it is that it revealed just how much pain there is out there.  What is frightening about it is that those of us who are not yet experiencing the later stages of the dementia in our spouses have that level of pain to look forward to. 

One of my first thoughts was thanksgiving that Mary Ann has a comparatively mild level of dementia at this point in its progression.  We have a quality of life that would be the envy of many who are immersed in the worst of the dementia.  We can get out to eat — maybe a little messiness, but the job gets done.  Mary Ann’s memory is still better than mine.  That is pretty scary!   Since she is lighter than I am; I can still provide the physical help needed to get basic needs met.  Our communication is limited, but it still happens.  We can travel, with some difficulty, but we can do it.  Mary Ann’s needs are still within the range of our friends who volunteer to spend time with her while I do other things.  Most nights she sleeps reasonably well. 

As I have revealed in some of these posts, we have frustrating challenges that push us to the limit.  We live in a narrow margin of functionality.  We are one fall away from the end of being able to manage here at home.  Any compromise to my health could destroy our system here with one another.  None of the other options out there is acceptable to either of us.  One or the other of them might become necessary, but they are still not acceptable. 

While the difficulty of our situation does not measure up to so many others’ situations, venting frustrations is still a necessary safety valve.  Those of us to do the caregiving and those who receive it need to release some pressure once in a while to stay sane! 

I am convinced that it is healthier to name the pain we are in once in a while, to admit to ourselves and whomever we trust enough to do so, that we just can’t handle it any more.  It is far healthier to vent than it is to try somehow to sustain the illusion that we are fine when we are not always fine.  We may want everyone to think we are noble, self-giving, saints who just love caring for our Loved One every moment of every day.   The price we will pay for maintaining that fiction will at some point be a psychic meltdown — probably a physical one too. 

The challenge is to find ways to vent our frustrations without hurting ourselves or anyone else.  One of the best ways seems to me to be just what the person in our online group did when she wrote out all those thoughts that seemed to her to be so horrible.   Another way to vent effectively would be to have a trusted friend or cluster of friends who can listen to some ranting and raving without getting upset with you, or worse yet, telling you that it isn’t as bad as you think. 

Some work out their frustrations in other ways.  The occasional, “oh fiddlesticks” or “gee willikers” spoken with great gusto can release a little tension.  Just make sure that the grandchildren are not within earshot.   One of my vents of choice is to string together a long, loud and involved rational explanation as to why what just happened should not have happened.  My kids just loved those lectures.  They would often say, “Dad, can we hear that lecture again, it would be so good for us.”

I have said this in former posts.  Taking the time to process what we are going through and writing about it in this blog has provided a surprisingly powerful mechanism for working out my frustrations.  Maybe it is as simple as talking the frustrations to death.  (And  you wonder why my posts are so long.)

There is a piece of reality that frees me to take off the rose-colored glasses, look past any illusions about my goodness, or strength of character, and expose the nastiness in me, the ugly character flaws.  I understand the One who made me to love me so powerfully that my nastiness, character flaws, even my doubts and anger are not strong enough to ward it off.  I can vent to my heart’s content and remain safe and secure, able to get on with life in a meaningful way after the safety valve has released some pressure. 

For those of you who do not share my understanding of reality, the same is so.  Setting aside the pretense and the illusions and facing down the harsh realities of who and what we are, provides us with a sort of reality therapy that allows us to get through the worst times and come out able to live meaningfully in the face of terrible circumstances. 

Caregivers need to vent frustrations.  Just don’t hurt yourself or anyone else when you do the venting!

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.

 

June 1, 2009

Good Ideas for a Caregiver and Receiver’s Day

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
Leave a Comment 

Volunteer Elaine has one rule for us: “Don’t read the book between my visits!”  She doesn’t want to miss any part of the story.  Elaine comes on a Sunday morning once a month for about three hours.  She reads from a novel she and Mary Ann have chosen.  This morning, she took Mary Ann in the wheelchair to the neighborhood vest pocket park a little over a block away.  The two of them enjoyed the flowers folks had planted in the back yards that border the park.  There were a couple of pairs of Bluebirds that entertained them.  When they returned, Elaine started reading.  The next Sunday morning that she comes, she will go on with the next chapter or two in the story.

Each of the Volunteers brings something different to the visit.  Sometimes just watching television with Mary Ann is what is needed.  Other times Volunteers will keep Mary Ann abreast of their own lives and families.  Some do a little ironing (or a lot).  Some will bring food and maybe make the meal while they are here.  All of them expand Mary Ann’s world.

There are times a Volunteer will come while I remain at the house, doing a variety of tasks, sometimes outside, more often in the office at the computer.  That option is especially helpful for Volunteers who might be new to the role, needing to get accustomed to helping Mary Ann, or uncomfortable with or physically unable to do some of the caregiving duties.

Of course there is a benefit for the Caregiver when there is a Volunteer.  As a retired pastor still worshiping at the church from which I retired, I have chosen to keep a low profile.  The church has an Evening Service, one that I started about a decade ago.  It has a comparatively small attendance, and the service is a little quieter and more contemplative than the morning services at which there are lots of folks of all ages coming and going.  The Evening Service is a friendlier setting for those with handicaps since there are fewer people to move through, fewer energetic little ones zipping here and there.

The Evening Service is the one that we have chosen to attend.  When there is a Volunteer available I use the Sunday morning time for solitude.  I usually drive to a lake about twenty minutes from here.  The lake is large and beautiful.  I usually find a spot there to do some devotional reading and just look around at the sights.  Today, after the time at the lake, I drove beneath the dam to a marsh that has been preserved for wildlife.  As I walked along a path beside the marsh, looking at and listening to the birds, as I listened to the occasional frog, watched the dragon flies, listened to the wind blowing through the tall grass, it dawned on me why their was such a calm and comfortable sensation washing over me.

When I was growing up, we lived two blocks from a swamp.  That swamp was my retreat.  I spent hours there, at least until my Mother figured out that I was at the swamp again.  I always went back, no matter how often I got scolded.  I still remember the willow switch stinging the back of my bare legs (unfortunately I was wearing shorts) with each step as we walked back from the swamp after Mom came down to get me.

The sound of Red-winged Blackbirds singing always takes me back to those idyllic days.  I am there again with frogs and cattails and tadpoles and water bugs, with the wind blowing through the weeds.

A few hours away is an essential element in healthy caregiving.  I need those times of solitude, times during which I have no responsibilities.  I stay as long as I choose in one spot and when I feel like doing so, move to another.  This morning I walked very slowly and soaked in every dimension of the experience.  The Great Blue Herons, Meadowlarks, Tree Swallows, Barn Swallows, Orioles, the sounds of the occasional frog, the wind in the nearby Poplar Trees (the greatest for making wonderful sounds when the wind is blowing), all got the time and attention they were due.  Each time I would stop for a while, more variety of sights and sounds would enter my awareness.  They were there before, but until I quieted myself and relaxed, I wasn’t aware of them.  Civilization made itself known through the sound of four-wheelers in an area made for them not far from the marsh.

Mary Ann and I each got a time this morning that was refreshing and renewing and entertaining.  After I came home there were some problems to deal with due to the fainting issue making its presence known.  After we got through that, I made lunch. Yes, I actually cooked!  It is another of those recipes so simple a caveman could do it (sorry Geico guys).

The recipe:  I opened a package of pre-cooked bratwurst sausages and browned them in some oil in a large pan.  After setting them aside I put a large quantity of onions (cut into fairly large pieces) and browned them in the pan with the drippings from the brats.  Then came a couple of spoonfuls of garlic pieces from a jar.  After that I added lots of slices of apples.  After cooking all that for a while with the lid on so that the apples cooked through and softened, I put the brats back in, opened a can of Bavarian style sauerkraut over the top and let the flavors mix and the liquid from the apples and kraut cook down a bit. On occasion I have added a little left over white wine into the pan to deglaze it.  I do that just because it sounds cool.  I guess it also adds a little sweetness. By the way, there is no need to add any seasonings to this dish.  The apples and onions and Bavarian style sauerkraut add plenty of sweetness, and the brats and sauerkraut add the saltiness and lots of flavor.

What made me proud today was that Mary Ann actually ate it and seemed to enjoy it!

After Mary Ann napped, we headed off to the Evening Service.  That was a corporate worship experience for us, and a chance for Mary Ann to get out into a setting that allowed some social interaction.  She did struggle a bit during the service.  There was one fainting spell, but it passed quickly.  We just did a little more sitting than usual during the service.

Getting out with people is another important need both for the Caregiver and Receiver.  It is tempting to stay isolated at home.  While that may be easier, in the long run it will take a heavy toll on both.

We picked up a strawberry shake from Sonic for Mary Ann on the way home.  I made myself a tasty peanut butter and jelly (Blackberry Jam) toast, we watched a little television, I watered the flowers and now I am writing this while Mary Ann is secure in bed — I can see her on the little seven inch baby monitor screen.

This is hardly exciting reading, but it is an account of some of the practical tools  that allow us to travel this journey with Parkinson’s in a way that doesn’t steal from us the quality of our lives together.

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 27, 2009

Can Caregivers still Laugh?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , , , , , , , |
1 Comment 

I can’t remember the last time I laughed like that.  I just couldn’t control it.  My stomach hurt I was laughing so hard.  Yes, it was at Mary Ann’s expense, but I just couldn’t stop, and she finally started laughing too.

Yesterday, I started adjusting the sheet and bedspread on her bed while she was standing next to me.  Her question was almost matter-of-fact.  Did I find the squirrel foot?

She has had hallucinations often in recent months.  There have been rats and mice in her bed.  Some have bitten her.  She has seen the Thursday people, the man and woman and their two children.  In the past she has seen a cat, other people, a bird sitting on the window, strings and threads almost constantly.  She has tried to pick up things from the carpet, things that were not there.  She has seen bugs in her food and other bits and pieces of foreign matter.

“Did you find the squirrel foot?”  The question didn’t just tickle it, it set it off my funny bone like the fuse on a fire cracker.  I burst into laughter.  At first, Mary Ann did not at all think it was funny.  After a while, she started laughing at me laughing.  Then, even though the hallucination had been real for her, probably the night before, finally, she was laughing together with me at the thought of there being a squirrel foot in the bed.

It was good to laugh.  It was good for both of us.  It is interesting that a sort of relaxed warmth and affection seemed to surface after our bout of laughter.  I really don’t remember the last time we laughed like that.  Laughter doesn’t come so easily these days.

I don’t know if it is just me, or if it is common to other Caregivers.  My sense of humor seems not to be working so well any more.  I have often taken myself too seriously, but I have also enjoyed kidding around with folks.  Since I am, as they say, vertically challenged, I have endured a lot of smart-aleck comments.  My defense mechanism of choice has been to beat people to the punch and make a joke about my height before they had a chance to do it.

In earlier years, it was all great fun.  Now, I find myself moving too quickly to feeling put down or belittled when I am the object of what would have in the past seemed to be just good fun.

When someone is being light-hearted and silly, the weight of twenty-two years of battling Parkinson’s,  the daily struggles that come with that battle, sometimes steal from me the capacity to just let go and laugh.

Often when ministering to someone who had lost a loved one a couple of weeks earlier, I would observe out loud to them how hard it is to deal with people around them just going on with their normal lives, conversing with one another about trivial things as if nothing had happened, while their world was in a shambles.

Full time Caregivers who are completely immersed in the task sometimes find it hard to let go of the struggle and relax, have fun, be silly.  The Caregiving task seems to expand and fill every corner of their world, leaving little room for the trivial.

It is easy to turn into a Grump.  I have come to do grumpy pretty well.  Even so, we have our moments.  Sometimes muscles that seem to have atrophied, the silly muscles, are revived by something unexpected.   At the risk of being indelicate, we have waged war on constipation for decades.  When there is some especially normal and plentiful activity (if you catch my drift), I can’t help but celebrate with a hearty “Good Job!!!”   I laugh, even if Mary Ann doesn’t.  Who would have thought such a thing could bring such joy.  Dr. Oz would be proud!  (By the way, the first person who reveals to my lovely wife that I mentioned this in my blog, will wake up the next morning with a squirrel foot in his/her bed.)

Gratefully, twenty-two years of Parkinson’s and a couple of years of mild and periodic dementia have still not stolen Mary Ann’s wicked sense of humor.  She has a knack for surprising people with an often softly spoken zinger.

I am not really sure why, but recently, the load has seemed a little lighter, even though there has not really been any change in its contents.  It seems a little easier to relax and be sort of normal, at least our version of normal.

Maybe there is still hope for the return of a sense of humor that has seemed to wander off.  Who would have thought that the search for a squirrel foot in Mary Ann’s bed could have such power!

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

 

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: , , , , , , , , , , , , , , , , , |
Leave a Comment 

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: , , , , , , , , , , , , , , , , , , , , |
Leave a Comment 

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 13, 2009

Caregiver: When Shall I Talk for Her?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
Leave a Comment 

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 6, 2009

A Caregiver’s Fear Realized – Hurt in a Fall

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

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: , , , , , , , , , , , , , , , , , |
[55] Comments 

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 3, 2009

Caregivers/Receivers Need Rituals, Habits and Routines

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
Leave a Comment 

In an earlier post, I reflected on the value of some of the chores I do, cleaning the commode, making the beds, doing the little daily tasks.  They give me the feeling that I have a little bit of control in circumstances that are mostly out of my control.

I want to take the matter of routine farther in measuring its importance to the long term health of both Caregiver and Carereceiver.  I have not studied brain science enough to speak with authority on this, but there are some obvious elements of our complex brain activity that I would call “automatic pilot.”

When Mary Ann and I were dating, I would occasionally drive home from her house fairly late at night.  Maybe it was more than occasionally.  Maybe it was most times I saw her those summers together when I was not away at school.  Maybe it was more than fairly late — could have been very late.  I am the last of five children (there would have been seven, but two who would have been oldest died very early in their lives).  My parents were pretty mellow by the time I came along.  Yes, I was the baby in the family.  No I was not spoiled — maybe a little. My adolescent years did not include battles with my parents.  Open rebellion is not one of my gifts.

While my parents and I got along well, the late arrivals home from Mary Ann’s place set Dad off.  He was not pleased, to put it mildly.  Mary Ann and I just had a lot to talk about!  Since my parents had moved to a place in the country when Dad retired, it was a twenty mile trip home from Mary Ann’s folks’ place on a two lane blacktop.  There was an S curve that demanded slowing down to about 35 mph to negotiate safely.  On more than one occasion, I can remember coming to an awareness that I was past the S curve with no conscious memory of having slowed down and driven through it.  That is automatic pilot.

For me auto pilot is that part of my brain that functions without my need to consciously reason out what I am doing one step at a time.  That is where resides all the things I can do without thinking.

In my world, as small as it has come to be, there are rituals and habits and routines that not only order our day but help keep us safe and get things done that would seldom get done without the ritual.

There is a habit that I have developed to protect against Mary Ann trying to get out of the wheel chair or sit down in it while the brakes are off.  Doing so could easily result in injury as the chair rolled out from under her.  Whether it is the transfer chair or the wheel chair, any time I move it when it is empty, I leave the brakes on and just lift the back wheels, rolling it on the front wheels only.  The only time I take the brakes off is when she is seated securely in the chair.  The reason for such a ritual is that otherwise I would not remember each time to set the brakes before she gets in the chair.  The habit is a way to deal with my forgetfulness.

I line up the meds in a certain way (that Mary Ann developed) and follow a ritualized pattern to make sure that all the pills get in the right space.  I close the gate at the top of the stairs to the lower level whether Mary Ann is up and about or not, so that it won’t be open should she end up at the top of the stairs while dyskinetic or having an episode of fainting.

I have tried to reinforce habits in Mary Ann that help make my job easier and help keep her safe.  I have to admit I have been an abysmal failure at trying to build those routines and habits and rituals.  Her automatic pilot seems to have already reached capacity.  I seem unable to eliminate ones that are frustrating to me or seem unsafe, and I am equally incapable of adding new ones into her auto pilot that make my job easier or seem safer. Her automatic pilot developed long before the symptoms of Parkinson’s effected her mobility and dexterity and balance.  My hope has been to help create rituals and habits and routines that will help make life easier when the time comes that most of her actions will emerge from the auto pilot and few will be controlled by the Cerebral Cortex, the conscious, reasoning part of her brain.  There are some habits that seem to be developing but only a few.

I made a discovery tonight as I was thinking about this and reading an article I found on the International Brain Injury Association website on the importance of rituals.  I have been looking at this from the perspective of a Caregiver, seeking to manipulate rituals and habits and routines to serve my need for safety and ease in doing the care.

The article affirms the power of positive rituals to raise the quality of life in the brain injured.  I am applying this to those who are suffering from Dementia and losing themselves in the process.  Here is a quotation from the article titled “Overcoming Anomy: The impact of Positive Rituals on Quality of Life,” written by Dr. Thomas E. Pomeranz. “Each of these events (rituals) as well as the many hundreds of others which follow throughout the course of everyone’s day is uniquely ‘you.’  I actively choose my rituals as they evolve and develop over time — the evolution of my rituals is an ongoing process.  These rituals provide me with a sense of security, predictablility and continuity in my life.  How unsettling and tragic it would be if all my quirky mealtime rituals, like salting everything before tasting, using a teaspoon to eat my soup etc. were prohibited.”

Anomy is losing one’s identity, sense of purpose, becoming diminished in value.  The article observes that when the brain injured are trained in Occupational Therapy to change their habits and rituals, it fosters anomy, which them sometimes increases their acting out in frustration.  Pomeranz uses the term “nosocomial behaviors,” negative results from treatments intended for healing.

What that means to me is that by trying to change Mary Ann’s automatic pilot, I may very well be diminishing her, resulting in her resistant behavior.  She is just holding out for her identity.  My need for her to do things in a way that I recognize to be safer or that make my job easier may not help as much as they lessen her.  Maybe it isn’t safe for her to jump up and get her brush to run through her hair, but that is what she does, without thinking of the potential for falling.  Her automatic pilot from before the Parkinson’s guiding her actions.  My scolding her and insisting that I do it for her may make her safer and me less fearful, but something may very well be lost in the process.

Just as my rituals and routines help me order the corner of the world in which I live, Mary Ann’s rituals and routines and habits help define her as an individual.  My role as a Caregiver becomes more a task of accepting who she is and what she does even when it is neither safe nor convenient.  Rather than trying to change her, the precious little time and energy we have need to be spent looking for ways to be safe and function effectively in spite of those habits.  This part of the job of Caregiving will become harder as the Dementia increases.  A number of those who are much farther along in this journey have recently been reflecting on the need to come to acceptance as they deal with frustrating behaviors in their Loved Ones.  When finally acceptance comes, they are free to use all their energy finding solutions to each problem as it arises.

Both Caregivers and Care Receivers need rituals and habits and routines.  Caregivers need them to help maintain some control in their world, to keep themselves and their Loved Ones safe, and to make their life and the caregiving a little easier.  Care Recievers need rituals to keep from being diminished and losing their identity, so that they can sustain their identity, their individuality and their sense of security for as long as 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.

 

May 1, 2009

Caregivers: Is the TV Friend or Foe?

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

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.

 

« Previous Page — Next Page »