Relationship Issues

Archived Posts from this Category

October 24, 2009

Stuck at Home Today

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

The toast was just out of the toaster with a little Mayo on it.  The Provolone and smoked turkey had come from the fridge.  The bacon was warm from having just been cooked to just the right crispness in the microwave.  The sandwich was still sitting in front of her, untouched, after I had made some more bacon and toasted a slice of bread, topped it with butter, peanut butter and jelly for my own supper.

I asked what was wrong — why she had not touched the sandwich sitting in front of her.  She said it was frozen.  There was another time not too long ago when she said the same thing about a sandwich I had made for her.  Of course I did the opposite of what should be done when hallucinations mix into reality.  I complained in frustration as I took it to the microwave to heat it up for her.  I complained that I have no power to fix what isn’t there — it was impossible for it to be frozen.  When I asked what led her to believe it was frozen, she said there was ice on it — again, impossible.

While I should be past letting these things cause frustration, it is true that it is impossible to fix what doesn’t exist.  It is already using up all my coping skills dealing with what is real.  Dealing with the challenges all day and all night (sometimes) creates a very thin veneer of equilibrium.  My frustration came and went in moments, and Mary Ann ate about a quarter of the sandwich — followed by a cookie (no wonder she stays so thin even with trips out for ice cream).

Today also included lots of trips caused by some intestinal activity — not always making it in time.  Gratefully, the disposable underwear makes that occasional incontinence easier to handle.  This was a day the role of waste management was exercised.

One of the complications was that the esophageal spasms flaired up today.  When they come, there is much discomfort that lasts for hours.  This attack lasted most of the day.  I have been to the Gastroenterologist and been tested in every way known to humankind.  There is pretty much no real explanation and no treatment.

One of the routine challenges of any Caregiver is the need to continue to deal with the needs of another, no matter how small those needs may be, even when the Caregiver is sick and in pain.  It just comes with the territory.

Since last night was not a particularly good one in terms of uninterrupted sleep, we were both tired.  As a result, Mary Ann napped for a long time, and I vegetated, trying to ride out the spasms.

Mary Ann is in bed now and seems to be sleeping.  I will, hopefully, not be far behind.  I am sure she will need one or two snacks during the night since there was little consumption of food today.

Two updates:  No raccoon visitation last night either.  We will see what tonight brings. The other update is that I have managed to avoid any exercise walking the last two days.  Tomorrow is another day.

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.

 

October 21, 2009

Raccoon Trap is Set!

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

Here we go again.  Tim says it is not Belle and the twins who have returned.  It is a new family that has moved in.  Tim’s conclusion is based on two things: One is that they could not have made it back from so far and crossed the Interstate to do it.  The second reason is that his reputation as a trapper extraordinaire would be injured if it were.

As expected, the return of the raccoons and the conversation about it has sparked Mary Ann’s expectations for seeing them in the bedroom at night.  When we arrived at the bed in preparation for lying down, she looked down to the floor along side the bed to see if she could see little feet — raccoon feet.

Assuming that we accomplish the goal, I can only hope that the trapping and relocating of this little raccoon family will remove that hallucination from the library. After we completed the task of trapping and relocating five raccoons a few weeks ago, while the hallucinations didn’t cease, there were fewer including raccoons.

Today continued to be a pretty good day.  Mary Ann did well at her morning Bible study group.  She spent much of the afternoon with a friend while I ran some errands.  They were on the deck for an hour or so on this beautiful day — something Mary Ann rarely does.  This evening another Volunteer/Friend spent a couple of hours with her.  It is especially satisfying to me when Mary Ann has had a good day and time with others.  It is tough for her to be stuck with me for long periods of time without a break.  Of course, I also appreciate the breaks.  Having time apart improves the quality of our time together.

By the way, that infernal Alien from planet Pedometer Prime that is trying to take over my body managed to send me outside to walk three times today!  This is crazy!  The little device he manipulated me into attaching to my belt says I took 17,581 steps today.  On top of that, the walks brought great pleasure since the day was spectacular.  What a devious plot this Alien is perpetrating.

Gratefully, so far I have successfully frustrated his consumption of my flesh.  By eating large quantities of meat and potatoes, chips, and sandwiches and anything else I can lay my hands on, I have reclaimed the a pound or two of the flesh that he had consumed in the last week or two.  Whew!  That was a scare.

The assessment of the condition of my body in preparation for the exercise and weight control program this Alien presence forced me to join was scheduled for tomorrow.  Maybe the power of the Alien is weakening.  The appointment was written down for the wrong day and had to be rescheduled to a day a couple of weeks from now.  Maybe I will be released from this evil possession before then.

I will report the progress on this round of the raccoon relocation project as soon as there is some.

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.

 

October 18, 2009

Racoons Return! The Real Ones.

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

There they were, Belle and the Twins, Tommy and Sally.  Tommy and Sally have grown much larger, but are still young.  Probably teens, judging from Tommy’s belligerent attitude.  He takes after Gus, his Dad.  Gus snapped at Belle one evening while they were on a date, having dinner on our deck.  Tommy snappped at Sally when the two of them were both eating at the sunflower seen platter last night.

While they were not ready to leave, and responding slowly to my attempt at shooing them off the deck, they did finally leave.  If Gus had been there, I would have stayed inside.

We thought the Raccoon Relocation program had taken them far enough that they wouldn’t find their way back.  So much for that idea.  For now, I am back to bringing in the feeders at night.  That wreaks havoc with the birds early breakfast call.

I hesitated to mention their return in Mary Ann’s hearing, since their presence outside is likely to trigger more hallucinations of them in bed with her.  She explained to a friend that they can flatten themselves out and crawl under the door.  I did mention them when having dinner this evening with our Son, Micah, and Granddaughter, Chloe.  Before doing so, I thought it through and concluded that Mary Ann’s sense of security would be lessened if I tried to mislead her, or whisper behind her back to others rather than just being open about it. There will be some sort of visible activity brought about by their presence anyway — as in starting again bringing feeders in at night and putting them out in the morning.  I am not sure about the possibility of trying to trap them and relocate them again.  They may all be too smart for the trap now.

I have tried to keep everything above board and as clear to Mary Ann as possible.  I use the word, dementia, in front of her rather than only using it secretly.  I would rather deal with the consequences of the truth and how it feels to both of us, whether we happen to like that truth or not, than to get wound into some sort of complex fabrication, trying to hide the truth, worrying about the chance of it slipping out.

The time has slipped away and sleep is anxious to have its way with me.  Enough for 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.

 

October 13, 2009

Change has Domino Effect for Good or for Bad

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
1 Comment 

Danger! Danger!  Alien attacks again.  This Alien presence from planet Pedometer Prime has had his way with me again.  I was out and walking some time before 7:30am.  I had no idea there was a 7am on Monday.  I didn’t think they started measuring time until at least 9am.

The Alien and Mary Ann were in collusion.  As suspected, sleep did not go quite as well last night after a daytime nap yesterday and earlier to bed than usual.  The consequence was that she woke up at 6:45am in need of food and ready to get up.  Do you see how this played into the Alien’s hands?  After eating a single serving snack of apple sauce, she was willing to lie down again while I went out to walk for twenty minutes or so.  It seemed best not to start meds too early, since the two hour increments of medicine would end to early in the afternoon.  I put the Lifeline pendant around her neck, got water for her, the television remote for the bedroom TV and headed out.

Now, of course, I am feeling energized and positive.  You see how this Alien presence weaves his subversive plot?  Here I am writing this post and, again, it is morning — Monday morning!  I guess to be honest for those of us who are retired, there isn’t a Monday.  In fact we bought a clock from Radio Shack that shows the day of the week so that we would know what day we are in.

As I thought about Mary Ann’s increased ability to walk and the better nights, the domino effect popped into my mind.  The better nights have encouraged a change in my pattern of activity.  It seems more possible to do an exercise walk.  I am more rested and, as a result, more willing to get up in the morning to get in the walk. The walk perks up my metabolism, providing the stamina to write the post earlier in the day.

In addition, by getting up earlier, I am more ready and able to get to bed earlier.  Since I am writing the post earlier in the day, I can use the time in the evening after Mary Ann goes to bed for listening to music, or engaging in a Taizé devotion, following a reading by Fr. Ed Hayes.  The latest readings have come from his book, Prayers for a Planetary Pilgrim.

All of the above has been about me, the Caregiver.  For Mary Ann, the good news is that she has seen little of Grumpy Caregiver and more of the patient and helpful Caregiver.  My confidence in her ability to walk has freed her from my constant presence, in her face, asking her to sit back down.  She has fallen on occasion, but still not often by comparison to the past. My confidence in her ability to walk has given me the feeling of being untethered.  That has felt  remarkably freeing.

It fascinates me just how interrelated all these circumstances are.  One domino falls, touches the next.  That one hits another, that one bumps one more.  Sometimes one small change can grow into something far more substantial.

I have no illusions.  Just as the dominoes can fall for good, they can fall for bad.  The hallucinations have begun to return.  Yesterday morning, there was a Raccoon in her bed.  When we drove into the garage after church last evening, Mary Ann in a matter of fact tone, noted that they hadn’t thrown away the quills.  I asked to what she was referring.  She answered, the Porcupine quills.  She saw them distinctly.  When I got out of the car, turned on the lights in the garage and helped her out of the car, she saw that they were gone.  She was, however sure there were some in the house.  When we got in, she went into the bedroom and looked around.  She didn’t comment further on the matter. Hallucinations, of course, can interfere with her sleep and keep her up for hours.

Since she got up early this morning, she may get tired and need a nap.  A nap might impact her ability to sleep.  The domino effect could take us back to more troublesome times.

To try to avoid that path, we have made a commitment to pick up a friend, head out for lunch and a ride.  My hope is that we can keep active until Oprah.  Once that time comes, she generally stays awake until bedtime.

We live on a very narrow margin of functionality.  We can do very well one hour or day or week, and very badly just as easily.  Right now we are on a side of that margin that has been very enjoyable.  Here is hoping for more time on this side!

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.

 

September 27, 2009

Two Nights in a Row!

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

Last night was pretty tough — up and down all night long, then up this morning at 6:45am.  The same is happening as I write this and has been going on for two or three hours.  There is no point in my trying to head in to bed yet since the activity is constant at the moment.  She has been climbing in and out of bed for no apparent reason with only minutes in between. 

While, again, it is a function of the disease, it is no less frustrating.  The time that I have generally claimed as my own in these late hours after Mary Ann goes to bed is coming to no longer be my time.  Tonight I set upon having some spiritual renewal time.  There is a podcast of  the Saturday worship service at the Taize Community in France.  The music is the sort that draws the participant in with a beautiful simplicity.  The readings are done in at least three, often more, languages.   There is a calm and peace that seems to include in community people like me, listening from thousands of miles away. 

I had first read a weekly poetic devotion by Fr. Ed Hayes, whose writings have had much impact on my personal Spiritual journey.  The reading suggested lighting a candle.  I haven’t done it in a very long time, but I pulled out a votive candle, placed in on the worship center, a cabinet built precisely for that purpose, with stained glass inserts in the doors.  I lighted another candle in a tall walnut candle stand made by my Dad, many decades ago.  Next to that candle stands the Shepherd’s Staff made by a parishioner and given to me at my retirement, a symbol of my forty years of ministry. 

A small iron Celtic Cross stands on the cabinet next to the votive candle.  Joining the Cross and candle on the worship center is a large ceramic bowl with lettering and symbols painted on by the other Staff members and again, given at my retirement.  The words are the summary of the congregation’s sense of purpose, “Grow in Faith.  Share Christ’s Love.”  The bowl is a symbol of Baptism, in our tradition, understood to be that first encounter with the Grace of God, an act of unconditional love by God, initiating relationship. 

One other item on that worship center is a simple memento of a long-standing friendship with a small group of parishioners from the first parish  I served as pastor.  It is a small beveled glass case with found items, pine cones, dried weeds, parts of plants, stones picked up on a trip together to Alaska many years ago.

With the candles and the light from the computer screen only,  I began the Taize worship.  As I settled in enjoying the sensations that come with such an experience, the monitor screen that keeps me aware of what Mary Ann is doing as I sit here, revealed the activity.  Since she is at risk of falling when she gets up, needs help to use the commode, to manage the cup of ice water next to her bed, to turn over in bed, her activity demands my participation. 

I have stopped and started the worship a number of times, getting more frustrated each time, resenting the loss of the freedom to enjoy the experience.  There is a odd sort of irony, that the very thing that helps me maintain a healthy equilibrium in caring for Mary Ann, is doing the opposite tonight. 

As the Neurologist allowed, I have just this evening increased the dosage of Seroquel, which is the medicine that both reduces the hallucinations and helps with sleep.  The last increase was not enough.  It is too soon to assess the effectiveness of this increase.  Certainly, the hallucinations have not decreased yet, they continue to be on the increase.  Just moments ago she told me to be careful of the little girl when I was adjusting her sheet.  This morning when she first got to the table for pills and breakfast, as soon as I turned on the light, she tried to show me the blood on her hands.  I think she believed it to be from the raccoons or whatever biting her.  There was, of course, no blood. 

Last night’s post mentioned my need for better choices in the area of diet and exercise for the sake of this Caregiver staying healthy.  Last night, today and tonight have revealed again the difficulty of following through with such plans.  When there are nights like these that string together, it is just survival mode.   A steady pattern of changed behavior seems completely out of reach.   I am still reading the book offering helps for improving the diet part of the problem.  Maybe some changes can be folded into our days. 

As Scarlett would say, “I’ll think about that tomorrow.”

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.

 

September 22, 2009

Sleepless Nights: Most Don’t Understand.

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

It just sounds like complaining, endless whining.  Caregivers are often very boring conversationalists.  Someone says, “Hello, how are you?”  Caregiver responds, “I was up fifteen times last night and eight times the night before.  We slept late in this morning, but I can’t concentrate enough to read anything more than the captions on pictures.  Simple tasks seem overwhelming, and by the way, what is your name, and what is it that you just asked me?”

Last night was a moderately restless night for Mary Ann.  We were up maybe once in each hour during the night for one thing or another.  That pattern is more bearable than the really restless nights when it is multiple times throughout the night.  She got up early this morning, but napped for a couple of hours. It just doesn’t seem to work for me to try to turn on the napping switch and sleep whenever she takes a nap during the day.  Anyway, I relish the time to do the things I can’t do when she is awake and in need of help.

The truth is, there is no way to communicate to anyone who isn’t in the same circumstances just how hard it is to get pretty much of anything done when the sleep patterns are completely erratic, with no ability to plan when there will be sleep and when there won’t be sleep.

While I was on the retreat in Oklahoma, our Daughter Lisa stayed with Mary Ann.  The first of the two nights, Mary Ann was very restless, and Lisa didn’t get much sleep.  Mary Ann was up early as she usually is after a restless night .  The next night, they both slept like a rock and slept late into the morning.  When we talked after I returned, it was apparent that she had a sense of what it is like to have the kind of erratic sleep patterns that are our normal experience.  She, of course has two young children and knows what is it like to have difficult nights and little sleep.

It is just nice to have someone in the circle of support who understands how hard it is to plan and do anything when there is no sleep pattern.  One of the reasons that I enjoy the trip to the Spiritual Renewal Center is that the many hours of uninterrupted sleep seem to return my ability to read and understand what I am reading.  I can’t say that I have read any of the book on Quantum Physics and Theology other than on the Oklahoma Retreats.  I often feel embarrassed at how little I manage to get done each day, and how poor my memory has become.  I am hoping that both are a function of the sleep patterns rather than the disintegration of my brain.

One of the problems the lack of sleep increases in Mary Ann is the intensity of the hallucinations.  I have mentioned that often before.  Today, she got up and headed toward the bedroom.  I asked what she was doing.  She was reluctant to tell me, probably not wanting to hear my opinion on whether or not she should be trying to do what she was planning.  She was going in so that she could sew a button on.  I don’t know what button needed to be sewn on to what.  She had just asked me to help her take off a corduroy shirt of mine that she uses as a warm layer to wear when she is cold.  After I took it off, she hung on to it, rather than letting me put it on the railing post, as usual.  I inferred that she had in her mind that there was a button that needed sewing back on that shirt.  There were no buttons missing.

I did not interfere with her plan.  I decided I would only intervene if she ended up with a needle in her hand and was hurting herself.  I stayed out of the bedroom as much as possible while she got out some balls of thread (probably more for cross stitching or something like that) and handled them for a while. I never saw a needle in her hand.  I just waited it out, helping a little when the thread on a couple of the balls got tangled.

I still don’t know exactly what was in her mind, nor do I know what went through her mind as she finally put the balls of thread back into the drawer and gave up on the plan.  I do know that it is painful to watch her confront the losses she has been suffering for so many years. The losses have been going on for twenty-two years in one way or another, sometimes more slowly than at other times.  Today was one of the times the contrast was especially obvious between the skilled sewing (made our first drapes, has made many quilts) she has done in the past and the inability to so much as get a needle, the thread and sew on a button — as well as the confusion about what was or was not there needing the sewing.

While I am busy complaining about the frustrating sleep patterns, she is busy trying to survive the loss of so much of what brought her joy and satisfaction throughout her life.  I guess I just need to finish this and get to bed so that I will have less to complain about.  So far tonight she has stayed asleep.  We will see how the rest of the night goes.

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.

 

September 15, 2009

Caregiver’s Life Preservers, Vol. 3

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

When Mary Ann got up from her chair once this afternoon, as usual, I got up from my chair to ask where she was going so that I could help her if needed.  She came the few steps toward me, placed her hands appropriately and began to dance.  This will be no surprise to those who know me well, but even after 22 years of Parkinson’s Disease, several heart attacks and blocked arteries, a stroke, a life-threatening bout with pneumonia, and now a couple of years into Parkinson’s Disease Dementia, she can still dance better than I can.  I stood and swayed a little, while she actually danced.  This is certainly a confusing little world in which the two of us are living.

The last couple of days have been better than the one I recounted in my last post.  Yesterday, Volunteer Edie came in the morning while I headed up to the lake to read, listen to music and watch the wildlife.  As always, Edie made a full and tasty meal for us, so Mary Ann actually ate well.

The meal I had prepared the night before did not thrill Mary Ann (pork chops, stir fried fresh veggies from parishioners’ gardens, and Uncle Ben’s butter and herb rice cooked in chicken broth).  That Saturday was pretty much a bust from beginning to end.

Sunday not only included the good meal that Edie had prepared, but there were football games.  Mary Ann is the more enthusiastic football fan in the house.  Both the Chiefs and the Bears lost, so she was not as pleased as she would have been had either or both won.

Today was a pretty normal day.  Zandra came to give her a shower.  That happens Mondays and Wednesdays.  We got out to the library, which she loves.  The library happens to be near G’s frozen yogurt, so there was the obligatory stop there.

A Volunteer, Jolene, came to spend time with Mary Ann after supper while I headed up to the spot with the view about ten minutes from our house.  I took with me a number of CD’s that I had picked up at the library.   After listening to one of the Celtic CD’s, I put in a CD of Taizé music.  Taizé is a community in France to which young people in particular come to be spiritually renewed.  I haven’t been there, so I can’t really describe what it is like other than what I have heard and read.  The Taizé community is known worldwide for their worship life and liturgical music.  The music is simple, with refrains that are repeated many times, often sung in harmony by whoever has gathered for worship.  Taizé music is in many languages.  It seems to be a place at which national boundaries cease to divide.

The music felt like a life preserver to me this evening.  It is my hope that I will find accessible Taizé resources to add some more disciplined regular times of spiritual refreshment in my days.  I suspect it might help raise the quality of care for Mary Ann and the quality of life for both of us.

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.

 

September 12, 2009

Bad Day Follows Good Day!

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

I am not sure I should be writing a post at the moment.  Maybe later in the day will be better.  At the moment she is napping, and I am able to be at the computer to write.  Last night’s post was almost euphoric after the great trip in the country.  I mentioned before closing that Mary Ann was restless.  She was up every few minutes until about 4am.  Then she insisted on getting up at 8:30am after three or four times up to use the commode between the 4am and 8:30am.

The needs began immediately.  As always, after a sleepless night the hallucinations have been almost constant, resulting it lots of time spent trying to pick up and throw away threads.  At one point as she was sitting at the table preparing to take meds and eat, she asked what the pink mesh was about.  She was convinced that she had it in her hands.

When she has had such a night and gets up early and stays up, there is oddly a great deal of lucidity intertwined with the hallucinations.  She is sometimes almost adversarial.  The restlessness has continued throughout the day up to the nap.  She has been popping up without warning almost constantly.  If I am out of sight for a moment, it is almost a certainty that she will get up.  That means even walking out of the room to get something for her won’t work.

I have asked in every way I know that she let me carry cups and glasses of liquid, since balance and fainting are issues.  Gratefully, it was water and not Pepsi in the cup when she went down, and, gratefully, she was not hurt.  Then there is the button by the toilet stool.  As always I asked that she push it before getting up to avoid falling in the bathroom.  I asked very slowly and carefully waiting to hear her agree to do so, out loud — which she did.  By the time I came back to check, she was half way across the bathroom with her slacks gathered around her ankles.

Last night and today provided a picture of how our lives are now being lived.  Mary Ann’s wants and needs at any given moment in the twenty-four hours of each day determine what I do and when I do it, no matter what my needs are or how I feel.  I have chosen this role, so whining about it is pretty futile.

What increases the level of frustration on a day like today is that there is no one with whom to be angry, no one to blame.  While I am not always shy about letting my feelings be clear, most of the time I do what needs to be done without complaint, and even try to be nurturing when I do it.  It is not Mary Ann’s fault that we are in this situation.  I am not a saint, but it is not my fault either.  Problems like this are not God’s idea of a good time.  God gets blamed for all sorts of things that were not part of the original plan, while often getting no credit for the wonder of life.  God doesn’t play games with folks.  Circumstances like ours happen to good people and bad people and people like us who have both good stuff and bad stuff in us.

I am grateful for yesterday, for a good day, some pleasure for both of us.  I am frustrated today, and struggling to keep it all in perspective.  Writing this post helps give some definition to the day that allows it to begin simply to be a challenging day, not a symbol of our entire life.  There is always tomorrow.

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.

 

September 4, 2009

What is it like to be in her shoes?

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , |
Leave a Comment 

At tonight’s Parkinson’s Support Group, one Volunteer got a taste of what it is like for her husband with Parkinson’s.  The Physical Therapist speaking to the group had her stand on some foam rubber and try to stand on one foot, then stand with her eyes closed.  She struggled to keep from falling.  She would have, had the Therapist not caught her.  The therapist then asked, how would you like to spend every waking moment struggling to deal with that kind of disability.  The therapist was addressing the Caregivers present.

I had two reactions: one was a feeling of guilt because I too often with impatience push Mary Ann to move more quickly doing whatever it is; the other was irritation that the terribly difficult task of the Caregivers was not acknowledged and appreciated.

The reality is that both reactions are valid.  All of us who are full time Caregivers lose patience and forget that those for whom we are caring can’t do the most basic things without great difficulty.  That they manage to do what they do is a testament to their courage and determination.

Caregivers have the impossible task of trying to anticipate the needs of another person who may not be able to verbalize those needs.  Then the Caregiver must put those needs ahead of his/her needs no matter how small or great they may be.  Caregivers also suffer from the whatever the disease their Loved One has.

I guess the only solution is to learn how to live in the tension between those two realities.  Forgetting just how difficult life is for someone with Parkinson’s or any chronic debilitating disease generates bitterness and frustration.  Denying the overwelming and draining task of being the arms and legs of another person as their Caregivers diminishes the ability to cope and find any joy in life.

It helped me to be reminded tonight of what Mary Ann is going through.  Better understanding of her plight makes it easier to treat our daily challenges as obstacles that need to be overcome, rather than relationship issues between us.  We are in this together.  We need all our intellectual, emotional, psychological and Spiritual resources to meet and defeat the real enemy, the Parkinson’s and its consequences.

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.

 

September 1, 2009

Missed the Parkinson’s Symposium

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

I got up at 5:30am on Saturday, showered, dressed and was ready by five minutes to 6:00am to start the process of getting ready to go to Kansas City for the Parkinson’s Symposium.  We would have to be on the road by 7:30am to make it on time.  I had already complained to the Dr. about the early start time for the target audience who have mobility and sleep problems.  He said the issue was finishing before lunch.  Registration was at 8am and the program started at 9am.  Living an hour and a quarter away added to the time issue.

Since I thought maybe Mary Ann could get ready in an hour (normally including morning chores, the minimum prep time is two hours), I let her sleep another half hour.   At about 6:30am, as I helped her to the commode, she said, let’s stay home.   I knew it would not work to try to force her to go. 

I had initiated plans for a luncheon with friends in Kansas City to celebrate two birthdays members of the group were having.  I told her that at least we ought to go to KC in time for that meal.  After all, I had started the process of arranging the meal out.  She agreed.  We both went back to bed for a couple more hours. 

It was good to visit with friends of thirty-five years.  Even though we are only an hour or so from that crew, we end up getting together only four or five times a year, if that. 

For a variety of reasons, the weekend seemed to provide a number of reality checks that reinforced the level of limits on our lives and the concomitant sense of isolation. 

Sunday morning a Volunteer came.  Edie always brings whatever is needed to leave behind a full meal, very tasty, with lots of variety.  During the Volunteer time I headed up to the Lake for a while and then to the marsh below the dam.   It was a helpful time.  Feeling out of sorts and searching for some sense of renewal, the combination of devotional reading and sensory refreshment was especially meaningful. 

The book (about spiritual formation) is speaking to my need, providing the sort of intellectual framework that fertilizes my roots and generates hope for growth.

What flooded my senses provided the grounding in the natural world that helps me reframe my situation.  As I stood at the edge of the lake, the gulls spread over the water were screaming.  I have no idea why, but they were screaming.  I guess that is just the way gulls vocalize.  Nearby, one gull flew over another that was sitting on the water.  The flying gull made what sounded like some belligerent remarks, and the one on the water started screaming at the one flying.  In other places on the lake, occasionally one gull would crash land into another and a skirmish would ensue.  I don’t think this is mating season.  I will have to ask a birder what was going on. 

There were Cormorants diving for food.  A raucous Great Blue Heron flew by joining the conversation as he flew.   I watched a butterfly go by and come very close to becoming a snack for a Barn Swallow that just grazed it.   

The highlight was what I had seen last week and thought to be a juvenile American Bald Eagle.  My birding expert, whom I call Bob, after I reported the sighting, suggested that due to a flying pattern I descibed it might have been an Osprey.  This week the bird came close enough to confirm that is was an Osprey.  It had the telltale black mask on its face.  In fact it dove into the water right in front of me to get a fish — an unsuccesful fishing trip.  As I continued to watch, another bird appeared in the distance.  It also flew toward me, and I was able to determine that it was a second Osprey. 

I spent some time walking by the marsh, providing a little exercise, much needed.  The lifting and moving and turning of Mary Ann provides some strength training, but my life is pretty much void of any cardiovascular conditioning.  A combination of creativity and discipline seems to be the path toward better physical and spiritual health.  I am better at the creativity than the discipline.  I am way better at talking and thinking than I am at doing. 

We are in another restless night.  It has been no more than fifteen minutes between needs for the last two or three hours.  It is hard to muster the energy for moving from thinking to doing when very tired and tethered to another person whose needs are constant. 

Yesterday there was what felt like the start of the flu during the evening after church and into the night.  Chills came for a time.  Instead of writing a post on this blog, I went to bed in hopes of getting whatever it was to let go.  Since I simply can’t be sick due to Mary Ann’s circumstances, I got better today.  We will see what comes. 

This is a very thoughtful time for me, with lots of feelings converging.  My hope is that there will be enough time for processing, and that a healthier pattern of living will emerge.  At the moment, I am shutting down.  It is time to get to bed!

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

 

« Previous Page — Next Page »