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

Posted by PeterT under Daily Challenges, Meaningful Caregiving | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , |
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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 11, 2009

Caregiver Decisions: Right or Wrong?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

April 9, 2009

Caregiver’s Loneliness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

April 8, 2009

Caregivers: Shall we Travel?

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

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

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

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

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

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

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

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

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

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

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

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

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

 

April 5, 2009

Caregiver Options for Support

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

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

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

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

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

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

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

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

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

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

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

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

 

April 4, 2009

Carereceiver’s Feelings about Caregivers

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , , |
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As I traveled in the car coming back from my Renewal Retreat, I thought about how the transition back to my role as the full time Caregiver would go.  Having done retreats before, I knew that once I was in the door, there would be little chance to ease back into the demands.   Having realistic expectations about the transition back to Caregiving duties has helped me very much in the last years. 

It is actually unreasonable to expect the person who has been left at home to be anxious to celebrate the wonderful experience you have had away from him/her.  As Caregivers it is important for us to try to put ourselves in the place of our Carereceiver who does not have the luxury of going on a retreat and enjoying some solitude, doing things for the sake of renewal, things they can no longer do. 

Sometimes the very things we do to help maintain our equilibrium so that we can continue to be good Caregivers make our Loved One’s jealous.  How could it be otherwise.  We are the people closest to them.  We are the ones they depend on for all their needs.  They would love to be able to take care of themselves.  They would love to take some time to do the things that used to bring them joy.  They would love to get away on their own just to enjoy themselves.  They can’t any longer.  Our freedom, however limited we may feel it to be, can be for them a painful reminder of the freedom they have lost. 

As a result, sometimes Caregivers don’t hear the words of appreciation for all they do, words they would like to hear.  Sometimes Caregivers receive some passive aggressive indications that they are not appreciated.  Sometimes Caregivers feel as if their Loved Ones resent them instead of appreciate them.  Sometimes they do resent us, whether it is fair or not for them to do so.

I have taken over the kitchen duties from Mary Ann.  Her way of responding if anyone asks about cooking is to say, “Theywon’t let me in the kitchen any more.”  She says it with a tone that sounds blaming.  It is the way she expresses her frustration that she has lost one of her most meaningful activities, one from which she got lots a positive feedback and satisfaction.

When the Grandchilren come and visit, there are hugs and kisses for both Grandma and Grandpa, but I am the one who can respond to the Grandchilren, who can talk with them and read to them and play with them.  The attention they give me is hard for Mary Ann to see.  It is another reminder to her of what she has lost. 

When people visit for any reason, her words are few or barely audible due to the progression of the Parkinson’s Disease.  I am the one who engages in conversation.  She has always been the entertaining one who had the smart-aleck comments to make.   She still has that wicked sense of humor and will get you when you least expect it.  Those who know her well still enjoy her sense of humor.  Now, her thoughts don’t always translate into audible words quickly enough to keep up with many conversations.   Of course, she gets frustrated and a little jealous.   

Caregivers are the ones who are the most accessible when Carereceivers need to vent their frustrations.  Their limitations are highlighted by anything we do, especially anything that was in their territory before the chronic illness took its toll. 

We feel hurt that we are doing so much for them but are not appreciated adequately for it.   One of the tasks that comes with caring for someone we love is to allow them to express their frustration, yes, even at us.  We are only human, so it does hurt when it happens.  The real culprit here is the chronic disease, in our case, the Parkinson’s.  While resentment and hurt feelings are a part of the Caregiver/Carereceiver relationship, it is the third member of the relationship, the chronic disease that is the source of the frustrations. 

In our best moments, we can talk about the frustrations and the jealousies and the hurt feelings and the lost freedoms.  My goal in keeping my equilibrium in the face of what the Parkinson’s has tried to steal from us is to match expectations with reality.  If I am constantly expecting Mary Ann to behave in a way that caresses my ego as a noble Caregiver, when she does not, my feelings are hurt, I am disappointed, and even more frustrated by all the difficult tasks associated with that Caregiving.  When I remember what has been taken from her, how hard it is for her to accept that she cannot do almost all of the things that formerly brought her satisfaction, when I remember what she has lost, it is easier to accept the times her frustrations come my way. 

It isn’t fair, it is just what it is.   Yes, there are sometimes hurt feelings and misplaced frustrations.  It comes with the territory.   The goal is to recognize the real culprit and refuse to allow that culprit to damage our relationship.

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

 

March 26, 2009

Caregivers: Your Medical Degree is in the Mail!

Posted by PeterT under Meaningful Caregiving | Tags: , , , , , , , , , , , , , , , , , , , |
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Mary Ann and I both had appointments with the Cardiologist today.  We knew him as a parishioner before he became our Cardiologist.  We like him very much.  He is good.  Very good.  We are grateful that he is good since Mary Ann has so many problems associated with her heart and its functioning.  He is an important member of the team.  It is a team.  The team includes the Cardiologist, the Parkinson’s Clinic Neurologist, the local General Neurologist, the Gastroenterologist, the Primary Care Physician (General Practitioner),  the Nephrologist, the Ear, Nose and Throat specialist, the Dermatologist (who has removed her four Basal Cell skin Cancers), the Endocrinologist, her Physical Therapist, Speech Therapist, Occupational Therapist, Clinical Psychologist, two or three hospitalists, along with numerous medical technicians and nurses of all sorts, some seen only once, some who are practically like family.  We have great medical care.

Each of these people is very good at what he/she does.  Each has specialized in a certain body system or body part.   The Primary Care Physician has the largest chart for Mary Ann, but there is no way he can keep up with all the tests and treatments and medications with so many different people making independent decisions about what to do to treat the problem in their area of expertise.

Here is the obvious problem in this marvelous Team effort.  Mary Ann is actually a single living being who is not simply a gathering of independent systems and body parts.  She is a whole somebody.   Every system is connected to every other system, making up a single functioning human someone. 

Any of you who has been a primary Caregiver for a Loved One with Parkinson’s or any other chronic illness understands very well nature of the your role as a Volunteer Medical professional.  All those people listed above know more than I do about their area of specialty.  I know Mary Ann better than any of them.  I pick her up when she faints or loses her balance.  I know when those problems come in relationship to how much medicine she has taken and when.  I have discovered that when the recommended treatment for her heart is put in place, her Parkinson’s is unmanagable.  I know that when she has some major intestinal activity there is likely to be some fainting and maybe a time of mental confusion.  I know that if there will be a test done that demands her lying still, we need to skip the dose of her main Parkinson’s Med (brand name Sinamet) or the test will almost be impossible to accomplish, because of the dyskinetic movement that is now a side effect of that medication.  I know about how long we have to get from one place to another before she is likely to faint.  

One of the somewhat unique characteristics of Parkinson’s is that there is not much that is consistent and predictable. Medicine may work or may not work on a given day or at a given dosing time.  She may be able to walk long distances without fainting or faint sitting in a chair or immediately on getting up.  She may be up a dozen times on the commode during the night, or just a couple of times.  She may be wobbly or steady, sleepy or restless.  Even the best specialist in the field knows that one regimen of meds may work for one person but not another. 

Your Medical Degree is in the Mail!  You as the Caregiver actually serve as the Primary Care Medical Practitioner.  You need to know what medicine is being given for what symptom(s) and what impact it will have on the others.  The clearest example of the problem of competing treatments came for us when the treatment for Mary Ann’s Congestive Heart Failure and Cardiac Heart Disease stood in direct opposition to the treatment for her Parkinson’s.  The diuretics and low salt diet lowered her blood pressure.   The Parkinson’s meds lowered her blood pressure also, and the progression of the Parkinson’s compromised her body’s ability to adjust quickly enough to keep blood pressure high enough to stand up and remain conscious. 

Let me put it this way.  One doctor said, no pizza and Pepsi, the other one said, yes, pizza and Pepsi.  One treatment was to keep from retaining fluids, making the heart work harder, the other treatment was to keep enough fluids in her body to keep her blood pressure from dropping suddenly.  At one point I inferred from what the Cardiologist that the side effects (the dyskinetic movements) of her main Parkinson’s meds was threatening her heart’s health.  We stopped the Parkinson’s Meds and she turned to stone. 

Caregivers are advocates for the quality of life of their chronically ill partner.  In our case, the doctors we regularly use now understand the narrow margin of functionality within which we live. 

I wonder how many of you who are primary Caregivers have taken your Loved One to the doctor, only to be ignored by the staff and maybe even the doctor, treated as an annoyance who should keep your questions to yourself.  I do not have enough fingers and toes to count the times, either in doctor’ offices or hospital rooms that I needed to explain to the medical staff some of the very basic dimensions of Parkinson’s, the way meds should be given and what the side effects will be. 

Caregivers are the Primary Medical Technicians for their Loved Ones.  Don’t get angry about it, just do it.  Learn everything you can about the disease.  Go to workshops and support groups, whether face to face or online.  Write down the questions and demand answers in terms that you can understand.  Ask what every medicine is supposed to do, what its side effects are and how it will impact other problems and the medicines being taken for them.  Advocate for the best quality of life you can obtain, even if you run into some attitude along the way. 

Like it or not,  you are the Team Leader.  No,  you are not a doctor, you do not have the breadth of knowledge and training, but you know your Loved One better than anyone else.  You are an expert on his or her disease and its impact on your lives.  You see the whole person, not just the separate systems and body parts. 

Our experience has been that any time we have encountered a medical professional who is good, very good, who knows the area well, he/she has always been open and inclusive, listened well and explained well.  Seek them out.  They will help you find the best quality possible for and your Loved One in your time together, however long that may be.

If you have a story to tell from your experiences with medical professionals, tell that story here.  It might help someone who happens to find her/his way to this site.

By the way, today’s news from the Cardiologist was good news.   There has been no measurable deterioration, nothing new in the last six months.   For the moment, we get to keep our current normal.  We can live with that!

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.  Comments are appreciated.

 

March 25, 2009

Caregivers/Receivers: What about Anger?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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Let me begin by telling you that I am not feeling angry at the moment.  This is not a chance for me to vent about my frustrations.  What I want to do is say what is obvious to those of us in Caregiving roles — as well as those receiving the care.  We get angry!

When we get angry we have to figure out what to do with those angry feelings.  While I would like it to be so, I am not always calm and rational and thoughtful and caring and sweet and loving — I had better stop before I lose my supper.  Mary Ann and I are not always sweet to each other.  Gratefully, neither of us expresses our anger physically.   We don’t call each other nasty names.   We do get angry. 

We have to figure out what to do with the anger so that it does not alienate us from one another or eat holes in our insides.  We don’t happen to be sweet talkers.  I appreciate those for whom sweet words come easily — when those words are genuine.  We are not cutesy-pie or sweet-cheeks or honey bunny sort of folks.  We didn’t use baby talk with our children — maybe a little with our Grandchildren, but that’s different!  We don’t use sweet talk with one another. 

Actually, I like that we say what we want to say to each other with words that sound genuine.  There is a trust that emerges that we are being straight with each other.  We try to be thoughtful in what we say without using words that sound like empty flattery.  We can both be pretty grumpy.  That is just the way we really are, sometimes grumpy, sometimes loving and kind and happy and content. 

When anger comes there are some elements of dealing with that anger that are unique to a caregiving and receiving relationship.  It just isn’t fair to express anger at someone who is sick, who has been battling Parkinson’s Disease for twenty-two years, who has had stolen from her every ability that brought her creative satisfaction, someone who depends on you for almost everything.   But where then can it go?  How can it be expressed.

Then, how can Mary Ann express her anger at me when moments later she has to depend on me to get her a sip of water or more importantly a dish of ice cream?  How can she risk alienating the one person who is there for her pretty much twenty-four hours a day?  Where then can the anger go, how can it be expressed.

If you haven’t discovered this for yourself, let me tell you something important about long and committed relationships.  They contain within them the capacity to be angry with one another, be grumpy, express it, and not threaten the relationship.   We trust each other enough to admit and express our anger. 

There are, of course, some rules.  No hitting!!! No name calling.  No damage to the furniture, doors or walls.  There may be an enthusiastic shutting of a door.  There may even be some yelling.  My children and those I taught in Confirmation Classes can testify that this little body can produce sounds audible from quite a distance, startling when heard at close range.   

There is an element in the expression of anger in a relationship that is not always appreciated.  Expressing anger appropriately in a relationship can strengthen it.  The operative word is “appropriately.”  Admitting that you are angry about something creates a vulnerability.  I can remember in our early years of marriage, Mary Ann once  saying to me, “I just wish you would get angry with me.”  By the way, she has lived to regret ever saying that. 

In her own way, she was asking me to be honest with her and reveal myself more openly, be more fully present with her.  She was asking me to trust her with my anger, trust her with what lay in my insides. 

Here is where that insight relates to our relationship as Caregiver/Receiver.  Were I to refuse to let her see any of my anger, it would signal to her that I thought her to be too sick, to debilitated to handle an honest relationship.  If I were to be sweet and nice and never grumpy with her, she would suspect that I had somehow lost respect for her strength. 

If Mary Ann were to become docile and compliant, never grumpy, always appreciating whatever I said or did, eating leftovers without complaint, never becoming impatient with me, it would signal to me the loss of someone who has been a force to be reckoned with, a strong presence, the person I have loved for all these years. 

We are not just Caregiver and Carereceiver, we are husband and wife!

What helps in managing the anger that comes is reflecting on it long enough (after the first reactive moments) to determine what it is that is the actual cause of the anger.  More often than not, what we are actually angry at is the insidious nature of Parkinson’s.  The ups and downs, the unpredictability, the inability to make plans and keep them, the relentless direction of this rollercoaster ride, combine to create frustrations that bubble up when some evidence of Parkinson’s presence pops up (sometimes as suddenly as Jack does when the little door of the box opens). 

I seem to have little ability to change this pattern, and I am frustrated by that inability.  When Mary Ann falls, which can be multiple times in a day, I get angry and grumpy about whatever it is that put her in the position of falling.  When I reflect on those reactive feelings, it becomes apparent to me what is actually happening.  I am scared.  We have been to the emergency room with blood that refuses to coagulate.  I know that head injuries are what most often finally take folks with Parkinson’s.  I am upset that I didn’t anticipate it and figure out how to prevent it.  I am frustrated that the very same medications that keep her able to function throw her into dyskinetic movements that compromise her balance, that the disease process combined with side effects of meds can cause her blood pressure to lower resulting in fainting.  I am angry that she doesn’t think about all that and avoid situations that make falling likely.  I am angry that the disease has slowed the thinking process making that kind of rational behavior difficult to maintain.  I am angry that she has always had a stubborn streak that, while it is keeping her alive, it is at the same time driving me crazy.   And then she wonders why I am angry at her when she falls since she isn’t the one who chose the Parkinson’s and brought all the challenges into our lives.  She isn’t doing it on purpose.

What about anger?  Well, admit it, name it, express it in ways that hurt no one, then think about it.  Use the energy it produces to find ways to deal with the problems that trigger it.  Don’t waste the anger.  Use it constructively.   Don’t let the Parkinson’s, the chronic illness, rule your feelings, your personal and emotional well-being.   Respect each other enough to be open and honest, vulnerable to one another.     Allow the chronic illness to become only an objective part of the landscape in which you live and grow and love. 

Yes, I would like to hear what you do with your anger.  I would like to hear what tools you use to manage it, release it, diminish its 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.  Comments are appreciated.

 

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