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 30, 2009

Caregivers’ Fears

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It has been some time since Mary Ann has told me she was seeing the two parents and two children in the house. I thought that hallucination had subsided with the last increase in the dosage of a medicine intended to control the hallucinations (Seroquel).  Today she told me that she wished that the Thursday people would stop coming.  I asked and she confimed that she was talking about the family she sees sometimes at our house.  I asked if she was scared of them.  The Neurologist always asks if the hallucinations are scary.  She answered, “I just wish they would go home.”

We returned from our vacation last Friday evening.  It is now Wednesday, and the hallucinations, the daytime napping, the fainting, the confusion that often comes during recuperation from travel are still continuing.  The recuperation this time seems to be taking longer than in the past.

With Parkinson’s Disease Dementia (a Lewy Body Dementia), people can move quickly and dramatically from a time of confusion and all the rest of the increased symptoms, to a time of crystal clear thinking.  What is always uncertain when symptoms increase is if the person will return to the normal that preceded the episode or stay at the new place, settling into a new normal.

What has often happened in the past is that when I have reached the point of concluding that she has declined to a new level, have emailed the kids and maybe our extended family and friends, reporting the decline, the next day, she has rallied and returned to clarity of thinking, the former alertness and the capacity to stay up most of the day.

Maybe tomorrow will be a better day, but maybe it won’t.  One of the fears of this and other Caregivers is that they have witnessed a permanent move to a lower level of functionality, another sign of the disease heading farther along the path toward its ultimate conclusion   One of the signs of the progression of the Dementia is daytime sleeping.  Some reach a point of seldom being awake.

The fears that come with Caregiving are legion.  What follows is a litany of some of those fears in no particular order:

Sometimes when Mary Ann’s Parkinson’s medicine kicks in, she breathes heavily and the breathing sounds labored.  Arms and legs are waving.  Often she has a hot flash at the same time with sweat poring off her.  It seems as if she is just going to explode.  It seems impossible that her heart can take it.  Sometimes when she walks ten or twenty feet the labored breathing starts.  I am afraid a clot will break loose from a heart blockage and she will be gone in minutes.

Whenever we are in a place that has tables or desks with sharp corners, having seen her fall countless numbers of times, I fear that she will get up and head off quickly, lose her balance or faint and hit her head.  She has fallen and hit her head.  We have had trips to the Emergency Room.  The fear is justified.  We have removed almost everything in out home that she could fall on and do serious damage.

She has had one stroke already.  She could at any time  have another.  There is a lesion on with a rough place on it in one of her carotid arteries.  The next fall could be her last.

When she is in a deep sleep and has not moved for a long period of time, I will look closely to make sure I can see some movement indicating that she is still breathing.

There is the fear that the time is likely to come when I cannot care for her at home.  Each decline brings that potentiality closer.  The thought of a nursing home, even a nice one, is intolerable.  I respond to her every need.  I can read her non-verbals.  I know the way she thinks.  No one else is going to give her the constant attention she deserves.  I have great respect for those who work with the aged and infirmed.  It is still a harsh reality that there are too few caring for too many, especially at night.

Then there is the strain on the Caregiver who travels back and forth to the Nursing Home, some spending most of every day there with their Loved One.  I have read posts written by many who are completely worn out by the demands of attending to their Loved One in a Nursing Home.

There are fears about the financial drain of Caregiving.  If there is to be long term care (try getting long term careinsurance for someone diagnosed with Parkinson’s at age forty-five), the division of assets demands drawing down a life savings.

Caregivers fear getting hurt.  If I end up in the hospital for any reason, what will happen to Mary Ann?  When the ambulance with me inside it leaves the house, who will take care of Mary Ann.

What will happen to her if I die first?  Years ago when there was some misinformation that suggested my heart was about to give out, I remember coming to a very peaceful acceptance that my life has been filled with meaning and purpose and good relationships, my children have grown to be better people than I could ever have hoped (there were no grandchildren yet when this happened), my faith is strong and secure.  It would be okay whatever happened.  As a Caregiver, the fear is not so much a fear of death but the impact of that death on others,  In my case, it is Mary Ann. It is the impact her needs would have on our children.

Then there is the selfish fear.  If she goes first, what will I do without her.  I fell in love with her in the summer of 1962.  You do the math.  In terms of human relationships, she has been the center of my world for all those years.  Our marriage has been far from perfect, but we have hung in there with one another and would prefer continuing doing to do so.

Caregivers have fears!  We can pretend otherwise, deny them, ignore them, or accept them.  We can be destroyed by them or live well in spite of them.  Which we do is a choice we make.  What makes sense to me is to look at the object of the fear and make plans for what we fear becoming a reality.  Do what we have the power to do in preparation for each contingency, and then get on with life.

The truth is that we all have fears, no matter what our circumstances are.  Each of us must choose how we will live.  Will it be with terror or with peace in our hearts?

For me it is a quiet trust in a Someone whom I believe to have constructed me and sustained me that allows me to live in peace.  The peace is a gift from that Someone.  I don’t deny that I am sometimes afraid.  It is just that the fear does not define me and rule my life.  I choose the peace.

For Caregivers who do not look to someone outside themselves for peace, peace can still be found.  Facing the fear, stepping back from it, doing what you have the power to do and recognizing the limits of your power free you to settle back into the life-generating core of your being.  It is a sort of reality therapy that provides healing.

Caregivers’ fears are legion.  They are rational fears.  What they fear may happen, may happen.  Even in the face of their fears, Caregivers are free to choose peace.

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 29, 2009

Caregivers’ Unhealthy Eating Habits

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I just finished a piece of wonderfully decadent chocolate pie.  Life is good!

For a few months we are providing a place to stay for the Pastor who is now the Senior Pastor at the Congregation from which I retired nine months ago.  His children are finishing the school year before the family moves to town.  The Congregation is bringing a meal a couple of times a week so that he can have real food once in a while.  Cooking is not one of my gifts. What a treat it has been to greet people at the door, loaded down with containers of nourishing food, providing an entire meal including dessert!

What was the norm for meals before he arrived, and what will be the norm again when he and his family settle into the home they have found here, is not so lavish and nourishing.  On a good day, there may be a relatively nourishing full meal.  A good day does not usually come more than once or twice in a week.  I like vegetables, and I can steam broccoli and will do the same with the freshly picked asparagus I hope to find at a local country market in the next few days.

The reality is that our normal does not include daily home cooked meals, far from it.  There are some dynamics in our pattern of living that do not make healthful eating an easy thing to do.  I suppose that Caregivers who have had food preparation as an element of their portfolio prior to the addition of the chronic illness to the family, do a good job of providing regular.  Cooking was not part of my portfolio.

Among the dynamics of caregiving that works against eating regular, balanced and nourishing meals, is the impact the chronic disease has on the appetite of the one receiving the care.  In the case of Parkinson’s Disease and Lewy Body Dementia, one of the early signs is the loss of the sense of smell and taste.  I have in the past asked Mary Ann how she determines what she likes and dislikes since from long before she was diagnosed with Parkinson’s those senses had diminished.  I don’t know exactly how she answered, but my memory of what she said is that there are some flavors she can pick up, then there are textures and visual cues and just a general awareness of what she likes and dislikes.

One thing that many of the Lewy Body Dementia Spuoses online group say is that their Loved Ones like ice cream.  One said that a health professional told her that the taste buds that sense sweetness are the last to go.  Mary Ann could easily eat two large servings of ice cream a day if it was available.  I need to add quickly, that when I was growing up, at least during the summer months, I remember my parents and I heading to the Oatman Dairy for hot fudge sundaes (topped wtih salted pecans) pretty much every evening.  My taste for ice cream is legendary among those who know me.  Don’t start a conversation with me about ice cream unless you have a substantial amount of time to give to that conversation.

Here is one of the problems Caregivers have in their attempt at healthy eating and weight control.  It is the needs of the one for whom they are caring that take priority.  Especially when there is some level of dementia in the picture, food issues emerge.  Just finding foods that are acceptable is no simple matter. The house ends up filled with what the one affected by the disease will eat.

Sometimes there are diet restrictions placed on the one with the chronic or progressive disease.  He/she may have diabetes or heart disease added to the primary illness.  It would seem then that it would be easy to maintain good eating habits.  Not so!  When your Loved One is suffering from some sort of major debilitating disease that steals them much of what brings them joy, how can they be denied a few simple pleasures.  If Mary Ann likes ice cream, that is what she gets.  The ice cream may be a couple of scoops from Baskin – Robbins, or a Sheridan’s Concrete, or a Turtle Sundae at G’s Frozen Custard, or a Dairy Queen Blizzard, or a Pecan Caramel Fudge Sundae at the Braum’s Dairy an hour away.  She likes Glory Days’ Pizza.  She gets a couple of slices of all meat pizza once a week, providing her with two meals.  She likes burgers and fries and KFC and Long John Silver’s and Steak and Shake and a Steak Burger and Cheese from the Classic Bean. She loves sweet jello dishes with cool whip and sour cream or cottage cheese.  She likes bratwurst and sour kraut and beef and potatoes and pork roast and chops.  Lunch at home almost always includes handfuls of Fritos and a regular Pepsi.

Yes, she has heart issues and should not be eating red meat or anything with cholesterol.  Yes, she has had congestive heart failure suggesting a diet low in sodium.  But she also has Orthostatic Hypotension (low blood pressure episodes) that is controlled better when fluid is retained allowing blood pressure to remain at a higher level.  Salt provides that fluid retention.

After weeks or months or years of trying to negotiate the mine field of evil foods, after fighting endless battles on what should and shouldn’t be eaten, this Caregiver, and most with whom I interact have concluded that there is more to be lost than gained by continuing the battles.  What is the point of denying someone simple pleasures just to add some more years to avoid those simple pleasures.

One thing that militates against a Caregiver eating a healthy diet is that the house is filled with food that is not helpful to maintaining a good balanced diet.  Of course the presence of that evil food does not force the Caregiver to eat it!  Isn’t the obvious solution simply to have healthful foods in the house to eat as well as the evil foods?  It may be the obvious solution to the problem, but it doen’t work.

The real culprit that sabotages efforts at healthy eating is the stress that comes with the task of living on a roller coaster going at breakneck speed completely out of control.  Food is the drug of choice for Caregivers.  We may not be able to stop the roller coaster, but we can head for the kitchen and eat a bowl of ice cream followed by a handful (or two) of cheddar cheese flavored Sun Chips.  We can slather the back of a a couple frozen cookies spoonfulls of Nutella.  We can eat a heaping spoon of chunky peanut butter dipped in a dish of chocolate chips.  Caregivers’penchant for late nights provides plenty of time for more than one foray into the kitchen. If we can’t stop the roller coaster, at least we can treat ourselves while we ride.

This is where suggestions for solutions to the problem usually come in these posts.  If I had a solution to this one, I wouldn’t have 165 pounds hanging on a frame built for 145.  I guess I need to watch Oprah while I eat my afternoon snack.

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 27, 2009

Caregivers: Hallucinations and Confusion

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Either there were two mice fighting on Mary Ann’s bed this afternoon as she was preparing for a nap, there were bubbles rolling down the hallway as she sat in front of the television earlier today, and there was a cat on the floor two pews ahead of us when we sat down for the Evening Service at church tonight or Mary Ann has been hallucinating today.   Lots and lots of times throughout the day from the time she got up in the morning until she went to bed tonight she has picked up non-existent threads from the floor, pulled them off her fingers and my hand once also.   

I knew today would be a day of hallucinations and confusion.  For reasons  almost never obvious to us when it happens, last night was one of the nights she was not able to get to sleep.  She was restless – up and down for water, trips to the commode, to eat a snack, to straighten her bedding, to reposition in bed, all demanding my participation.  Needless to say, I am not at my best today either. 

It pretty much never fails that when she does not sleep at night, the next day she regularly crosses the nearby threshold from lucidity to confusion and hallucinating.  The confusion is especially difficult since in her case it is not always clear if she is confused or talking about something real.  She wanted me to get a fruit jar from the basement to send to our Daughter whom she said wanted a clothes pin (or didn’t know what one looked like).  I haven’t yet emailed my daughter to see if they had a conversation the last time we saw her that might explain this . 

I am assuming that this episode last night and today is part of our recuperation process after traveling a couple of times in the last three weeks.  It seems as if she is more vulnerable to bouts of confusion, long daytime naps and hallucinations after traveling.  It is not always clear, however, what causes the adventures into the  part of her thinking and seeing that is not within the bounds of reality. 

Mary Ann’s first major bout of confusion came almost two years ago.  She began to faint often one day and struggle to be clear where she was and what we were doing.  She moved into a non-responsive mode.  She could sit in front of the television, eat food and, with the usual assistance, manage to get bathroom duties accomplished.  It seemed as if she had left the planet mentally.  She did not recognize our Daughter (very painful for her) when she came by to bring Mary Ann something.  By about the fourth day of this, I became convinced that she had crossed a threshold permanently.  Then, without any hint as to why, on that Tuesday morning she woke up completely lucid and conversant without a hint of confusion.  She was able to remember some of the time during her seeming mental departure. 

Parkinson’s Disease Dementia and Lewy Body Dementia have the somewhat unique and insidious characteristic of moving dramatically and quickly between confusion and lucidity.  Some recent threads of posts on the Caregivers of spouses with Lewy Body Dementia have been about the challenge of dealing with the hallucinations, confusion, sometimes paranoia.  PDD and LBD folks live on a margin between reality and somewhere else.  They can move from one place to the other without warning, with no obvious triggering event.  This is different from the somewhat predictable Sundown Effect that comes with Alzheimer’s Disease. 

One thing that Caregivers of Loved Ones with PDD or LBD struggle with is that those who visit or talk with their Loved One may only see and hear the lucidity.  They wonder what the Caregiver is talking about when suggesting that their Loved One has Dementia.  That problem can be especially troublesome when other family members don’t believe there is a problem, while the primary Caregiver is going crazy trying to deal with their Loved One and make difficult decisions. 

A number of those who post in the LBD Spouses group have far more bizarre expressions of delusional behavior and hallucinations.  Some have dealt with Capras delusions in which the person is convinced that their Caregiver (even if a spouse or child) has been replaced by someone who looks just like them.  They will ask to see the other you.  Some who have dealt with that delusion suggest simply telling the person you will go and get the real you, then they leave the room and return announcing that you are now the real person.   There is another delusion called Reduplicative Paramnesia in which the person thinks that the room has been replaced by a duplicate that is not the real one.  One Caregiver said she asked her Loved One if it would be okay to go ahead and stay in this new room.  Some Caregivers in the LBD group, who live in what they call Lewy Land, have to put up with spouses saying horrible things to them, lashing out at them, being accused of all sorts of infidelities because of the paranoia. 

When I read those posts I am grateful that Mary Ann is lucid most of the time, other than on days like this.  The most disturbing hallucinations have been the times she has seen a man and two children, then a man, woman and two children, finally accusing me of protecting them by lying when I explained to her (in what seemed like a lucid moment) that they were not really there. 

The general wisdom is not to argue with the person who is hallucinating since they are actually seeing what we cannot see.  My seat of the pants approach to her hallucinations is to explain that while she can actually see what she is hallucinating, it is not there outside of her mind, in a way that I can do anything about.  When she sees the mice in bed, I run my hands over the spot to verify they are not there.  I wait for her to throw away the threads or have her hand them to me to throw away.  I offer to take her to the place where she sees whatever it is to be. 

While she has told me that the problem is not that she is hallucinating but that I don’t believe her, for the most part, we have been able to work through the hallucinations and the confusion without major problems.  Judging from the experience of others, the time of major problems with hallucinations and confusion and paranoia will come.   

As with most Caregivers, we live in a fragile world traveling on a very narrow road with steep precipices on both sides.  It is not for the faint of heart! 

The problem is that most of us in the Role of Caregiver are  faint of heart.  We are at times scared and frustrated and out of control.  We take each moment as it comes, dealing well sometimes and poorly other times with what we encounter in a particular moment.  We just make do, and in doing so we survive to live to deal with whatever the next moment brings. 

It is interesting to me what impact the accumulation of surviving those moment by moment encounters has on our sense of value and purpose.  Even as our coping skills seem to diminish, a quiet strength appears.  It grows little by little as we endure.  I have more respect than words can express for those in the LBD Spouses online group who have traveled much farther down the narrow road that we have.  They are truly heroes. 

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 23, 2009

Caregiver Vacation Realities

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The following is quoted ( some paraphrasing) from some journaling I did the other night while on vacation at a Bed and Breakfast in Arkansas. We had spent a wonderful evening with some dear friends on the trip there.  It was our first night at the B&B. (Let me apologize in advance for the graphic detail – it seemed the only way to explain the challenges of caregiving.) It is a follow-up on my last post on travel preparations:

Ask me now if I would sound so bold and courageous about traveling! It is 3:35am. Mary Ann has had a usual middle of the night need to go to the bathroom. I got her into the transfer chair by the bed and rolled her as far into the bathroom as I could and transfered her to the toilet stool. Pants needed to be changed. That task involved the use of one of those flimsy plastic bags that refuses to open or stay opened to put the completely soaked pad (generic Depends) in. While sitting on the stool, she fainted (low blood pressure due to the Parkinson’s and medication side effects). She was out for two or three minutes while I held her on the stool – no easy task since at that point she is dead weight.

She came around enough to get her to stand up. While I was getting pad and pajamas back in place, she went out again. This time it was a major challenge. As light as she is, holding her up in a standing position when she is cannot assist is beyond the strength in this little sixty-six year old body. I tried to get her twisted around and on to the transfer chair. She slipped off on to the floor. Picking her up from the hard ceramic tile floor put my back in danger of damage. There were no other options that were available. I pulled her up and managed to get her into the transfer chair. I tried very hard to use my legs rather than back, since damaging my back would sabotage our system of survival.   There was a painful twinge.

When finally she was in transfer chair she was still not fully awake. The low BP leaves her brain an without adequate blood supply, so she is often minimally responsive after a major fainting spell. Since the bed was particularly high, getting her into bed so that she did not slide back on to the floor was difficult. I finally got her on the bed, twisted her into position, adjusted her on to her side and she is now secure and sleeping.

On the positive side of the fainting spells and only partial awakening, she has no memory of the events.  Sometimes she doubts that the spells really happened, but she seems now to accept it when I tell her about one.

In the journal, I added that she had had a noisy night before this episode. She was vocalizing and active, obviously having vivid dreams. One of the characteristics of people who experience Lewy Body Dementia is that they have very vivid dreams in which there is bodily movement and vocalizing. The normal dream process includes some sort of automatic disconnect of mind and body. LBD folks seem to lack that automatic disconnect so they tend to act out and speak out what they are dreaming. I have heard lots of laughing, crying, screaming and talking over the years.

Vacationing while having responsibility for someone needing full care is exhausting and frustrating. We spent a significant portion of the evening looking for a Baskin and Robbins Ice Cream store she was convinced she had seen more than once earlier in the day. There was none.

The day after the challenging night included the usual tasks that are added due to the presence of Parkinson’s in our household. As I describe them, I am embarrassed to talk as if they are a burden to me. Many of these tasks are well-understood by anyone who has been the primary parent of one or more children. Those responsible for little ones do many of these things routinely with little or no credit for doing tasks that are terribly difficult and draining. I understand far better what Mary Ann did as a stay-at-home Mom for two children. As I whine about the impact on me of things I do for Mary Ann, she has the primary burden of the disease and the resulting dependence on me to do them. She has more reason to whine than I have.

Morning duties included giving Mary Ann a shower, washing and drying her hair.  On vacation there is no bath aid. The routines at home, provide some security and order that helps us through the days. Vacations provide new challenges. After getting the shower and hair done, comes the medication ritual. There is an Exelon patch to be removed and new one put on. The old band-aid on one skin Cancer must be removed and a new one put on – Polysporin first. Then the other skin Cancer needs to be cleaned with Peroxide. Only after those duties are complete do I start my own morning regimen.

The breakfast as always here was wonderful. We arrived, I moved Mary Ann from her transfer chair to the chair at the table and put the transfer chair aside. Pills needed to be put in a container for her to take with the meal, then the daytime pills put in the timers and the timers set and started. Meals always include getting Mary Ann’s food arranged and prepared for her to eat. The omelet needed to be cut into bite sized pieces, the same with the sausage. What parent of little children has ever gotten to eat food while still hot. It just goes with the territory. For someone debilitated with Parkinson’s Disease, eating is a difficult task. The food tends to slide off the side of the place as it is chased to the edge. The food can end up in lots of unintended places. During mealtimes, my stomach is usually in a knot as I try to determine what to do and what not to do to help, as I watch things heading for a place that will create a mess for me to clean up. Certainly Mary Ann struggles to get meals eaten. She dislikes my help, but often allows it. Meals are more uncomfortable when eaten in a public setting.

The day included a self-guided tour that took us to see beautiful gardens, but demanded pushing the wheelchair for two or three miles on paths, sometimes paved and sometimes not, sometimes ADA approved and sometimes not. The circumstances allowed few options other than effort that got my heart pounding to a degree that left me wondering if I would have to call for help to make it back to the entrance. Today Mary Ann wanted to hunt for diamonds at a diamond mine around here. It was too far, so we ended up spending close to a couple of hours looking for quartz crystals, both of us in the hot sun, me digging through the gooey clay and Mary Ann, while in her wheel-chair, examining the discoveries .

Now that we are midstream in the trip, the question remains. Is it worth it?  It is much harder to handle things away than at home.  The barriers that must be dealt with are many.  We could stay home and watch television.  It would be so much easier.  A trip like this allows us to see things we could not see and do things we couldn’t do at home.  It gets us away, with new people.  It provides exercise and stimulation (sometimes more than we would otherwise choose).

Would we still do it?  Even knowing the realities, at the moment we would still choose to go.  We won’t be home for another two days.  I’ll let you know then if that is still my answer.

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 18, 2009

Prolonged Grieving for Caregivers/Receivers

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Downstairs on a quilt rack is a queen-sized Sampler Quilt. A Sampler Quilt is a quilt made with many different patterns that serve as samples of traditional quilt blocks. That quilt was stitched entirely by hand — no machine quilting. The stitches are even and very, very tiny, the way quilt stitches are supposed to be. It took Mary Ann two years to transform pieces of fabric into a completed quilt. Parkinson’s has stolen from her the ability to handle a needle at all, let alone sew a quilt.

Those who have a progressive disease with no known cure are forced to watch their abilities, abilities that that helped define them as unique individuals, diminish until each one crosses a threshold that leaves them empty of that ability. Each loss is a little death. It is grieved just as if a piece of her/hiim has died. Each loss brings with it all the same stages that have been used to describe the grieving process that is experienced after losing a loved one.

Most of the times Mary Ann and I find ourselves in conflict it is because we disagree on the degree to which one of her abilities has diminished. She is convinced she hasn’t crossed the boundary that leaves that ability on the other side, out of reach. I am often more ready to find acceptance than she is when an ability is lost to her. While the conflicts are unsettling, seeing her fighting acceptance reassures me that she is still her feisty self. When I see her accept whatever loss it is, I feel a deep sadness that a little of her is lost.

Watching someone you love lose a bit of herself grieves the Caregiver. To put it in more dramatic terms, Caregivers watch their Loved Ones die a little at a time for however long the caregiving goes on. While that is a harsh way to speak of it, calling each loss a death helps put in motion the process that ultimately can lead to acceptance.

Please understand, there is no way to make this part of the life of a Caregiver and Carereceiver pleasant and fulfilling. What can happen is by accepting the loss, full attention can be given to the task of building a new reality that has new ways of finding meaning and fulfillment. That, of course, is far easier said than done.

As a Caregiver, I am tasked with finding new ways to live meaningfully, when old ones are no longer available. I cannot stop the progression of the disease, the process of decline, but I can look for places to stop along the way, places of significance and meaning, places that could not be discovered if still trapped in the grief.

As I was thinking about this today, it dawned on me that the chronically ill and their caregivers are not alone on this journey of loss and grief and the need for acceptance. Every one of us who has seen a gray hair or felt the sharp stab of some arthritis or seen wrinkles where the skin used to be smooth and taut, every one of us who has been defeated at our favorite sport by someone younger and more agile has some grieving to do.

Since we are all mortal and confronted by our mortality at every sign of aging, we all have the challenge of identifying what we have lost and moving through the grieving process to acceptance. Otherwise we will waste the time of life we are in trying to live in a time long gone. We will miss whatever opportunities lie embedded in the present, opportunities unavailable to us until now.

For those with Parkinson’s Disease or any other seriously debilitating disease, the pace of the loss is increased, the degree intensified. There is just more grieving to do and more acceptance to seek. The abilities in those with a progressive disease may diminish to the extent that it seems virtually impossible to find anything left for them to do.

In almost forty years of pastoring, I have been invited innumerable times into peoples’ lives at the death of someone they loved.  (Sometimes it was someone I loved too.)  Sometimes the death came at the end of a long life. Sometimes there was a protracted illness. Sometimes people stood watch as their loved ones died painfully.  Sometimes the death came so suddenly as to leave them breathless, having had no time to prepare or say goodbye.  No matter how it happens, a death must be grieved. It is not a matter of one being harder or easier to deal with, each must be grieved.

For those who are Caregivers for someone with a progressive disease for which there is no known cure, the grieving is spread over all the years of Caregiving.  There are times when the pace is measured by small steps and times when there are frightening leaps toward the inevitable end of the journey.  Grieving is an important process in the journey.  It gives us a chance to express a variety of emotions, to deny for a while whatever it is that has been lost, to spew out some anger, to spend time wondering what we could do to change it, to just feel bad about it for a while and finally to recognize it for what it is, another step we have taken as we travel along with each other and the disease.

When we move through grief in a healthy way, the accepance that comes frees us to be ready to see what possibilities lie in the present.  We are able to see them and judge their value by what is so in the present, not by a past that is no longer accessible.

It must be added that those of us who deal with Parkinson’s Disease, Parkinson’s Disease Dementia, Lewy Body Dementia and a number of diseases like them have the even more frustrating challenge of grieving the loss of one level of functionality, only to see it return for a time, then disappear, return again, all without any identifible pattern.  It is sort of like the weather in Kansas and Oklahoma.  If you don’t like it, just wait a bit, and it will change. One loss may be grieved many times.  There is joy when what has been lost returns and sadness when it leaves again.  We have the challenge of grieving the loss of consistency and the ability to make and realize plans based on the abilities that exist at the moment.  We have to develop the ability to turn on a dime and change directions based on what is so in each moment as it comes.  Our need is to come to acceptance that we are not on a train moving at a measured pace in a certain direction.  Our need is to accept that we are on a roller coaster with all the twists and turns, ups and downs, with no way of knowing when or where we will be next.  We know the destination for certain.  We just have no idea when that destination come and the roller coaster will stop.

In the meantime, the journey with Parkinson’s or any debilitating disease accompanying us demands that we learn to grieve effectively.  The grieving helps us find our way to acceptance so that we can live in the present, so that we can see and take advantage of whatever opportunities lie in the present as it really is.  The ability to grieve losses effectively frees us to live with meaning and purpose the life we have each day as it comes.  The day we are in is the only one we have for sure.  Grieving well frees us to live it to the full.

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.

 

April 9, 2009

Caregiver’s Loneliness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

April 5, 2009

Caregiver Options for Support

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

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

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

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

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

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

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

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

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

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

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

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

 

March 27, 2009

Working and Caregiving: Help!!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , |
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I got back earlier today from doing something that was a part of my job before I retired.  I remembered.  I remembered what it is like to have to get someplace and do something required by a paying job, while at the same time having a more important responsibility tugging against that job, responding to the needs of the one for whom  you are caring.  The chances are the income from that work is necessary for putting food on the table and keeping a roof overhead.  You are likely to be the sole sustainer of the environment in which you do the Caregiving. 

What can complicate it even more for those who are working full time and doing full time care for a Loved One, is, should it be so, that job being something deeply satisfying and fulfilling, something that gives meaning and purpose to your days, something for which there is not only the tangible affirmation of being paid for it, but sincere words of affirmation from those being served through your work. 

I remembered.  I remember the feelings of being so tired that it hurt, it just hurt.  I remember seeing no way to survive the next week or day or hour or minute.  I remember the panic of knowing there was an absolutely necessary commitment being threatened by a last minute major need in the life of the one loved deeply who needs you a that same moment.  I remember heading off for a day so full of intensely demanding activities as to be more that could be handled when rested — that day being faced after the third night of very little, sometimes no sleep.

Help!!  Some of you who happen upon this post are at your wit’s end, the end of your strength and stamina.  I have read emails from folks who work and care for someone far into Lewy Body Dementia.  I have known well a number of folks who have cared for someone with Alzheimer’s Dementia.  I have walked alongside many who have cared for someone dying of one or another form of Cancer, ALS.  Most of them have had to somehow manage to maintain a livelihood, a career, a job of some sort, while their heart and mind and attention were dominated by the needs of the one they left when they went off to work each day.

When I was working full time and doing full time care when not at work, sometimes people would say, “I don’t know how you do it!”   My answer was usually something like, “It is just what I do.  Everybody has something to deal with.  This is just our particular challenge.”  Now that I am retired and doing full time Caregiving only, I don’t know how I worked full time and cared for Mary Ann when I was at home. 

I have no simple solutions to the problem of balancing work and caregiving in a way that keeps the Caregiver able to function at both tasks.  As I reflect on those years, there are some things I remember doing to keep from being reduced to a heap of quivering flesh. 

I started with having a career that is deeply fulfilling.  It was stimulating, creative, energizing, brought me into some of the most intimate moments in people’s lives.  Finding purpose in work helps the work become a tool for survival.  Even if the job sometimes seems to you to be such a small part of some institutional activity as to be virtually meaningless, think for a moment.  Of what is your job a part?  Who depends on you doing your part of the whole task?  Finally, there is some reason that you are being paid to do whatever it is you do.  Someone needs the product or service that is the end point, no matter where what you do falls in the process or how tiny a part it may seem to be.   Yes, there may be people in that workplace who seem bent on making your life miserable.  Yes, there may be a culture that diminishes the value of what you do.  Don’t give away the power to decide for you what value you find in what you do.

Lot’s of folks I know bring a healthy lunch with them to work, along with some walking shoes and head out with a friend or two for a mid-day dose of exercise and the concomitant endorphin rush (a legal high).   Sometimes a two minute visit to an online site that has beautiful pictures and music can provide a moment’s retreat and help provide some balance in the day.  Exercises at the chair, or walking the stairs instead of using the elevator, or parking a long way from the door can provide some help in managing the impossible load. 

When returning to the house from work, the needs for my help were always immediate.  There was never any decompression time, transitional time, a moment to catch a breath before the accumulated needs had to be fulfilled.  I have heard some say that they arranged for whoever had been staying with their Loved One (whether paid or volunteer) to stay an additional length of time to give them a change to get their bearings.  That never worked at our house.   There was always an expectation that I would give immediate attention. 

While at home, having a list in mind (or written down) of things that take very little time to do, whether household tasks or activities that provide a moment’s break or some activity that includes a bit of renewal or personal satisfaction can allow a touch of balance.  Instead of wasting precious time immersed in frustration and feelings of powerlessness, be very intentional about creating and taking moments for yourself.  In  my case those moments would be used immersed in my own thoughts, reframing what I had just been doing in a way that allowed a sense of accmoplishment or purpose.  I sought moments of distraction engaging the elements of the day, sun, rain, clouds, birds, flowers, trees, fresh air, the feel of the breeze.   A trip to my favorite spot for soaking in a Kansas view can be done in twenty minutes including travel time.   Two night, three day, trips to the Spiritual Renewal center in Oklahoma happened twice a year when I was working.  The time in the car was retreat time as CD’s of my favorite music calmed my spirit. 

While those moments of reflection, of engaging my senses worked best for me, what has worked for you?  The challenge is to find things that can be done in the moments in between caregiving tasks.  How are you managing to survive both working and caregiving?  How do you keep from unraveling completely?

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