October 15, 2009

Can I Keep her Awake Another Day? Should I?

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , |
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I think not!  We made it through today, but it took much coaxing and insisting and endless activity. She did not sleep very well again last night.  There were about as many trips to the commode, changes in position, drinks of water as have been so for the last few nights.  She was up at 7am, laid back down while I showered and got up for the day immediately thereafter.

I got her hair washed, got her dressed and delivered her to the circle meeting well before it was time to begin.  On the way home after the meeting, I suggested getting a movie or two for the late afternoon or evening to keep her awake.  When we got home she wanted to nap.  Since it was lunch time, I was able to keep her up for that.  Then she wanted me to leave her home while I took the car in for an oil change.  I thought about doing so, but since she was still up we just got in the car and headed to the Honda place.

When we got home after that, the television kept her attention for a while.  We ate supper,  watched one of the movies, and now she has just gone to bed.  My goal has been to keep her up during the day until finally she will sleep soundly through the night (with just a few commode trips) and we can return to a more manageable sleep pattern leaving both of us better rested and reducing the hallucinations.

Colleen commented on last night’s post: “Your comment about sleep reminded me of children.  The more tired they are, the more hyper they get, and the less likely they are to sleep.”  Before I read that comment, I had decided that tomorrow, if she wants to nap, I will not try to keep her up and busy, but just let her sleep.  Colleen’s observation may very well explain what is happening.  Keeping her up may actually be making it harder for her to sleep through the night. It is far too soon to determine if this will be a sleepless night or a sleep-filled night.

By the way, supper tonight was a treat for both of us, even though I did the cooking.  It was a meal simple enough even for me to prepare. When Edie came to stay with Mary Ann on Sunday (providing a meal, as she always does), she mentioned that they had just picked many green tomatoes.  We sent with her Mary Ann’s Mom’s recipe for green tomato relish.  I mentioned that it made the best glaze for a ham known to humankind.

Guess what was delivered to our house last evening while I was at the local Audubon Society presentation?  There were a couple of jars of freshly made green tomato relish and a huge slice of ham about an inch thick, ready to be cooked.  I wrapped a couple of sweet potatoes in foil and baked them until they were soft and moist, ready for the butter and brown sugar, spread the relish on the ham and broiled it (per instructions on the wrapper), opened and heated a can of peas, and the feast began!  The only moment of concern came when the relish under the broiler began to smoke.  I had visions of alarms sounding and fire trucks gathering.  Gratefully, the newly cleaned smoke detector was no longer too sensitive [see earlier post].

The movie we rented was The Soloist.  It was is engaging account of someone who managed against seemingly insurmountable odds to make music.  While our situation is far less dramatic and hardly compares to what the character in this true story encountered and, apparently, still does, the movie encourages the idea of living meaningfully, no matter what.  That is precisely the goal toward which we are drawn.

On that note, the Alien presence from planet Pedometer Prime had its way with me again.  I walked once outside at Cedarcrest and once in the mall while Mary Ann was at her Circle meeting.  Then came a powerful attack by the Alien.  Before it was over, I committed to a five week exercise and weight reduction program at Rebound Physical Therapy.  This lack of sleep must be getting to me also.  My resistance is down.  There is confusion from synapses that have not had time to connect as they do during that deep sleep that is so important to us.  Have I finally simply gone completely mad!!

One last note:  She has already been up for a couple of drinks of water, saltine crackers and a snack-sized container of applesauce.  Is it possible that she can have still another restless night?  The answer to that question will come soon enough.

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 14, 2009

It Was Great While it Lasted!

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , |
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The Domino Effect is just beginning to lean away from the good days we have been having.  Last night Mary Ann did not sleep as well as she has the last ten days or so.  Yesterday morning the signs were there when she got up very early.  She had had a little trouble getting to sleep that night.

Our lunch out with a friend and the trip to check out the birds at a lake in a nearby town kept Mary Ann awake through the entire afternoon.  She had not napped in the morning.  I have mentioned before that while common sense would suggest that being up all day would result in sleeping better at night, with this version of Dementia with Lewy Bodies (Parkinson’s Disease Dementia) common sense is pretty much irrelevant.

Last night she also had some trouble getting to sleep.  There were more trips to the commode, and restless times, especially in the very early morning hours.  This morning she got up at about 6:45am and stayed up.

The hallucinations have had a pretty steady presence today.  While I haven’t really asked the rest of the group, I suspect that she either doesn’t have them or doesn’t reveal she is having them when she is at her Tuesday morning group.  The time I have been with her today, the hallucinations have been present and she has seemed out of touch, having lost the mental sharpness of the last week or so.

I was determined to keep her up today in hopes that sleep would be better tonight — hoping that the common sense approach might actually work this time.  I think it was our Daughter, Lisa, who said she thought we might enjoy the children’s movie “Up.”  Mary Ann had mentioned that as one she would like to see.  So, off we went to see to the $2 theater to see “Up.”

It was not what Mary Ann expected.  I am not sure what she had understood it to be like, but I don’t think she realized that it was an animated feature.  Oddly, we were not the only adults there without children or grandchildren.  It seemed to me to be a movie that might scare or be too sad in places for little children.  The movie was well done — Pixar alwsys seems to do creative animation.

She went to bed about an hour ago and does not seem yet to be completely settled.  I hope by being up all day today, we have kept the cycle of daytime sleeping and night time waking from getting a strong foothold.

She will be up early tomorrow so that I can get her ready for a Circle meeting at church.  Our bath aid has an in-service meeting and can’t come in the morning, and there is no Volunteer able to come.

I opted out of the Spiritual Formation group that meets every Wednesday morning here so that I would have time to help her with the morning prep.  My hope is that in the future, I will be able to manage both the group and getting her to the Circle meeting.  The Spiritual Formation group has come to be an important element in process of maintaining equilibrium.  This shift in the direction of the Domino Effect is a reminder that no amount of will power or commitment or planning will change the harsh reality that we are on a roller coaster with no controls to which we have access.  We can only react and make the best of whatever comes.

On that note, I did manage to get in a walk early this morning while Mary Ann sat watching television. I got in a second one while she was at her group.  This evening, there was a Volunteer wtih Mary Ann.  For the first time ever, I attended a local Audubon Society presentation.  An hour long video of birds and their songs was a wonderful treat.  The videographer was there to comment and answer questions.

Well, tomorrow is garbage day, so I had better get the garbage out, and I need to be up early to get MA ready for her meeting.  Here is hoping there will be some sleeping tonight!

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: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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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.

 

October 11, 2009

Daytime Nap. Will She Sleep Tonight?

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The Alien from Pedometer Prime chooses bribery to seek a permanent home!  Will he succeed?

[If you have not read yesterday’s post, what I just wrote will make no sense.]

This was a very cold and gray morning.  A blustery breeze from the north made it feel even colder when out walking.  Since there was a Volunteer this morning, I was able to go out to the lake where I usually sit in the car, read, listen to music and watch for birds and any other wildlife that may appear.

My regular routine includes moving to the Delaware Marsh below the dam to take a short walk with binoculars handy.  Today, the Alien overpowered my resolve to expend as little energy as possible and set me off at a brisk pace for a long walk around the marsh.

It is an insidious plot.  I started walking feeling as gray as the day, shuddering at every gust of the cold wind and rattle of the leaves on the Cottonwood trees.  The cold kept me walking as fast as I could on the rough ground.  Occasionally I heard or saw evidence of a few birds, but most of them had the sense to stay sheltered from the cold.

As I walked the Alien began to tempt me to let him stay in his new home.  I began to warm as the Alien slowly turned up the thermostat on my body’s furnace.  I walked past the spot my short walks had taken me in the past.  I discovered markers for a path that took me into new areas of trees and fields, marshland and ponds.  The cold air changed from an irritation to be endured to a fresh and inviting Siren.

Even the gray sky ceased to be a depressing presence and became a calming backdrop for trees and weeds and wildflowers.  The Alien was enticing me to embrace his presence rather than send him back to Pedometer Prime.  I made full circle around the Marsh, having had no idea prior to this morning that there was a path all the way around it.  I came around the last turn to an information sign posted on a stand that said I had just walked two miles! That evil and subversive Alien!!!

At the lake I had watched many thousands of gulls resting on the water and flying through the air.  On the drive back across the dam I passed one hawk sitting on a post almost within reach as I went by.   I spotted another hawk and stopped the car on the dam to watch it as it remained absolutely stationary in mid-air, only occasionally moving it wings to reposition itself against the breeze.  I watched that seemingly impossible aerial display for many minutes.  As I left the dam area and traveled a road among the trees to get back to the highway, a couple of deer with very dark coats of hair were standing on either side of the road.

When I arrived back home, there was a hot meal waiting.  As often happens on a Sunday morning (we attend the evening worship service), a Volunteer had come to stay with Mary Ann.  As always, Edie brought with her the fixings for a full, nourishing and tasty meal; she prepared it and set it out on the table for us. There is enough to allow at least one more meal.  No cooking tomorrow!

Now to the title of this post.  I just could not keep Mary Ann awake any longer.  It was tough to keep her up yesterday, but we just kept going, a trip to Sam’s Club at midday, a noon meal (thanks, Lisa, for the pizza muffins), a trip to the regular grocery store, and supper (steak and twice baked potatoes from Omaha Steaks — I hate cleaning the George Foreman grill).

Now with both of us sated after a hot meal, with football on the television, I simply could not convince her to stay out in the living room in her chair.  She is more of a professional football fan than am I.   The Kansas City Chiefs were playing (they just lost in overtime — no surprise they lost, just that they managed to take it to overtime).  The only team that would capture her interest more would be Da Bears.  I cajoled and encouraged, but she was clearly wiped out.  She is still in recuperation mode from the long trip from which we returned a couple of days ago.

The question remains: Will she sleep tonight?  After ten good nights in a row, none following a daytime nap, tonight seems likely to break the string.  There has not been a clear pattern correlating naps and restless nights, but common sense suggests there must be some correlation.  Here is hoping that in this case common sense does not prevail.

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 11, 2009

Walking Caregiver!

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Warning!! The return of the body snatchers has begun!  Aliens from a newly discovered hidden planet just outside the orbit of Pluto, a planet named Pedometer Prime, have snatched both Mary Ann and me and replaced us each with one of their own, beginning the invasion.

Actually, the invasion has already begun. You can see them everywhere.  They are walking the sidewalks with a telltale look of superiority on their faces that seems to say, “I am walking and you are not!”  They threaten to take over by the sheer weight of their numbers as they outlive the rest of us.

My only hope is that a rainy day will come, breaking the power of the alien with which I am possessed.  However, I have heard that some of the aliens just move indoors to malls and gyms when it rains.  Frightening!!!

Actually, I am virtually immune to a long term stay of my resident alien, since the power of my laziness and lack of discipline is likely to drive him out soon, probably within hours.

Yes, it is true.  Yesterday when we were returning from the library and the requisite trip to G’s for Turtle Sundaes, I asked Mary Ann if she would be okay sitting in the car at Cedarcrest (a park that surrounds and includes the Governor’s Mansion) while I walked for bit.  There are many paths including one that is fairly level, in an open area including some picturesque ponds, a path about a mile in length.

The day was spectacular.  It was cool and crisp and clear.  The sky was the crystal blue of the approaching winter.  There was much pleasure just soaking in the beauty of the fall colors and the scents of Autumn.  I suspect there may have been a trickle of endorphens assisting since that comparatively short walk got this little exercise averse body pumping blood to every extremity including my brain.

If that is not enough — and this is what assured me of the alien presence — I got up this morning, earlier than usual, put the Lifeline around Mary Ann’s neck so that it would be within reach as she remained in bed, layered a shirt and jacket for the thirty degree morning and walked a little over a mile in the neighborhood.  I hope this is not a sign of some cataclysmic event bringing all life as we know it to an end.  Let’s hope not.

And now, here I sit at the computer writing this post and it is still morning!!!  Having spent a week in another time zone, our body clocks shifted just enough to make it possible to get up and hour earlier without so much effort.  Another odd but pleasing quirk is that Mary Ann has been sleeping well at night.  Understand for us a good night’s sleep still includes a couple of trips during the night to the commode and a couple more very early in the morning.  Mary Ann slept well every night during our trip and has slept well the last two nights.  That could, of course, change tonight.  If it does, it does.  If the good nights continue, we will just enjoy them.

Added hours in the morning create both a challenge and an opportunity to get out of the house a little more.  I have inferred from Mary Ann’s sleeping so well on the trip that staying awake all day does help the nights go better.  That, of course, seems obvious, but in the past staying up all day has not necessarily correlated to sleeping well at night.

Well, we had better get out of the house before we return to our usual vegetative state.

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 28, 2009

Solutions Seem So Obvious!

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Then why don’t we act on the obvious solution and solve the problem!

She napped for over five and a half hours today.  She napped for over three and a half hours during the day yesterday.  I can’t remember how long she napped the day before that.  Isn’t it obvious?  Just keep her up during the day and she will sleep through the night.

I just read an article in the online newsletter from ScienceNews.  Apparently a recent study using rats associates sleep deprivation with an increased risk of experiencing Alzheimer’s Dementia.  The assumption was that the sleep problems were a result of the disease.  It now seems possible that they are part of the disease process itself. (Yes, I, too, wonder how a technician can determine if a rat has Alzheimer’s Dementia —  actually, I do know the answer to that, but I am not saying here — suffice it to say, once the information is obtained, the rat no longer needs his/her pension.)

Back to the solution.  Why not just keep her up all day?  I am sure that solution seems obvious.  If it is hard to keep a two-year-old awake when those eyes fall shut and that little body goes limp, if it is hard two get a two year old up early from a nap without a major meltdown, imagine trying to get a strong-willed, independent adult who has a right to make her own choices up from a nap when she wants and needs very much to continue sleeping.

I can remember a day some weeks ago when I managed to keep her up all day with trips here and there.  She was restless that night anyway, up and down for most of it.  On the other side of it, while things may change at any time, after having that more than five and a half hour nap today, she was tired and went to bed early this evening.  She has been sleeping soundly for the three and a half hours since then.

Obvious solutions don’t always work.  With that said, I admit that it would make sense to try to get her to sleep less during the day to increase the likelihood of sleeping soundly at night.  One of the struggles with being very assertive in waking her up is that when she is napping, I have time to myself.  I am able to concentrate on tasks and accomplish things that can’t be done when Mary Ann is awake, up and about.

Today was a spectacularly beautiful day, warm and breezy.  With the video monitor on the table next to me, I was able to sit on the deck and read, while enjoying weather, the waterfall, the birds (hummingbirds buzzing over me regularly).  I finished the book on weight control (The Volumetrics Eating Plan) with time left over for a snack of potato chips (just kidding).  I did try to get Mary Ann up a number of times after the first three of the five and a half hours, but she just couldn’t do it.  She had said she felt pretty bad when she laid down this morning — no wonder after two nights of almost no sleep.I knew she needed the rest.

I guess, if I appreciate the time the daytime napping gives me, I shouldn’t whine about the restless nights.  I concede the point.  The glitch is that I am not getting much sleep either.  I could try to nap whenever she naps.  That also makes sense.  Were I to do that, my every waking moment would be centered around her needs.  To survive and remain useful to Mary Ann, I need some time to myself when I am awake.

Sometimes obvious solutions don’t really work as well as logic would suggest they should.  I suspect that those looking in from the outside lose patience when obvious solutions are not used to solve the problem about which the Caregiver is complaining

As I was preparing to write this post, I thought about the legions of Caregivers out there.  First of all, every parent has experienced the challenges of caregiving, unless they have abandoned their responsibility to their child[ren].  Single parents, especially those with more than one child have challenges I can’t even begin to comprehend.  There are many who have responsibilities to their children (they never end, no matter how old the children become) and at the same time responsibilities in caring for their aging parents.  There are those who have severely troubled children, physically and/or mentally.  They struggle to care for them, some have to make tough choices demanding allowing others to do the care at a facility outfitted for that care, having around the clock staff to give that care.

I have the luxury of having only one person who needs my full time attention.  Gratefully, our children do not need our care.  In fact they are members of the sandwich generation, raising their children and concerned for our needs as well.

All in all, I guess I should stop whining.  I won’t, but I should.  I think those who are full time Caregivers need some whining time.  Blogging is great, since it creates the illusion that there are people listening.

Whether anyone is listening or not, it helps to talk about it.

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

 

September 27, 2009

Two Nights in a Row!

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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.

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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 21, 2009

We Have Food!!!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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Maybe that is a little dramatic — three exclamation points — but we do now have a number of new items of food in the freezer.  While our Daughter, Lisa, stayed with Mary Ann for the three days I retreated to Oklahoma, she made lots of things that are within my cooking comfort zone and put them in the freezer.  She wrote the preparation directions on pieces of paper and put them with each item.  Gratefully, they are mostly the kind of directions that say, thaw, cook in oven for an hour at 350 degrees.  I can handle that!

Pete and Carla stopped by with a meal this noon.  They are very thoughtful folks.  I was sorry to miss seeing them since I was at the lake while Volunteer Jan spent time with Mary Ann. Jan and Mary Ann seem to enjoy each other’s company.  This afternoon Elaine came by, picked up Mary Ann and took her to the Quilt Show.  Mary Ann loved making quilts for a number of years.  She especially liked piecing the tops together.  She spent two years hand stitching the quilting on her first quilt, a queen sized sampler quilt.  After that, she took them to be machine quilted once she got the tops pieced. It has been hard for Mary Ann to accept the loss of the ability to make quilts.  After such a busy day, Mary Ann crashed late this afternoon, so the evening service at church was not an option for us.

This morning’s time at the lake provided a couple of interesting treats in observing wildlife.  The first is a repeat of an encounter I had a few weeks ago.  Again today there were two Ospreys sailing overhead.  One came right over the car, so I got a very good look at him through the binoculars.

I made my usual visit to the Delaware Marsh, which now has very little visible water in it.  The area that I walk has one large puddle left.  As I approached it from a distance, walking a on tall ridge alongside the marsh, the water in the puddle seemed to be almost boiling with activity.  When I focused the binoculars on the mud sided puddle, it was boiling, not from heat but from the movement of snakes, maybe a dozen of them. They were twisting and turning rapidly, in constant motion.

After watching a while, it became apparent what was going on.  The water had dried up in most of the area, leaving that large puddle as the last, very confined, place where the frogs and fish were trapped.  While I am not absolutely sure about the fish, I could see the frogs jumping out of the water, flying into the air, with snakes in speedy pursuit.

Some of the snakes were pretty large, at least two or three feet long — some probably longer.  The snakes began slithering off in the mud and marsh grass as I approached.  One large snake and one medium sized snake remained in the mud at the edge of the water even though I was not far away.  As far as I can tell, looking online, they were white bellied or yellow bellied water snakes.  They did not have the telltale triangular head of a venomous snake.  While I am not particularly fearful of snakes, I kept my distance.  The binoculars provided as good a look as I would get even if I tried moving closer.  I am sure they would have moved away quickly if I had climbed down the ridge into the marsh.  My visit to that puddle probably provided a stay of execution for some frogs and fish.  I doubt that the stay will be for long.

Uh-oh.  There seem to be signs of restlessness being revealed by the video monitor.  I hope Mary Ann sleeps well tonight since tomorrow includes two different Sonograms, heart and carotid artery.  We always hope for no change in the condition of both.  Blocked heart arteries, some weakened heart muscle and a dented and rough surface on a large lesion on one side of her carotid artery keep us aware of the harsh realities of her condition.

Each day is a gift!

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 20, 2009

Caregiver’s Life Preserver, Vol. 4 – Followup

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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Remind me how much I loved weeds and bugs as a child.  I seem to remember writing something about that in an earlier post.  I just about had my fill of weeds and bugs on this trip to St. Francis of the Woods.

I have always loved the outdoors, but I have also always loved being comfortable.  Trudging through waste high, sometimes head high, weeds for a couple of hours, bugs surrounding me, checking me out at close range, stretched my idyllic view of the outdoors to the limit.

I remember walking the woods at my parents’ place in Northern Illinois, loving everything but the deer flies.  They kept me from idealizing the outdoors beyond reality.  Then there was the Poison Ivy.  The world of nature can be a hostile place.

This trip to St. Francis of the Woods was different from the last few times I have gone.  When possible, I usually go after the first frost and before the bugs have come out in the spring.  Cool and crisp air, dried weeds and clear skies have welcomed me the last few years.  This time it was warm, muggy and cloudy.

With that introduction, you might suspect that this trip was not a good experience.  It was.  First of all, while I am concerned for the environment and the well-being of all creatures, insects included, it seems to me that the person who invented the insect repellent Deet should be awarded the Medal of Honor.  I was not bitten by one mosquito, nor did I find one tick on my body, and while the bugs were everywhere, when they landed on me, they didn’t stay for long.

One benefit of coming at this time of the year was that there were flowers everywhere.  The sights were beautiful.  The flowers drew butterflies.  There were all sorts of butterflies of different sizes and colors.  Every once in a while one or two would land on me as I walked through the weeds.  There was one particular species that caught my eye.  It was probably a Fritillary, but I am way outside of my comfort zone in naming a butterfly other than a very few.  It was fairly large, and the brightest, almost, iridescent orange.  There might be as many as three flying around one another in a cluster.

There are now a couple of bee hives at the corner of one of the fields that I walk through.  I gave them a fairly wide berth.  Through the binoculars, I could see hundreds of bees flying in and out and all around the hives.  I am not particularly fearful of bees, but I didn’t want to have any unnecessary encounters by moving into their home territory.  I noticed as I walked through a nearby field, that the flowers were covered with bees.  St. Francis should have a great harvest of honey when the time comes.

The first evening’s trip through the woods provided no bird sightings at all.  The next day, there was more activity.  I was snorted at by some deer hiding in the woods as I walked by.  At one point a couple of does ran through the weeds in front of me from the woods on one side to the woods on the other.  There were a couple of groups of White Pelicans flying overhead, appearing to be headed the wrong direction for a fall migration.

It was hard to find a spot to put my three legged stool so that I could read a bit.  I didn’t want to be completely buried among the weeds.  I managed to find a spot with short enough weeds that I could sit, eat an apple and then read a very few pages.  The muggy, warm air and flying bugs around my sweaty brow made it uncomfortable enough to discourage me from staying long. I did catch sight of a flock of Common Nighthawks going by.  They are not often seen in the daytime except when passing through in the spring and fall.  Nighthawks are in a family of birds called Goatsuckers.  I just get a kick out of knowing that and saying the word “Goatsuckers.”  I need to check online some time to find out how that name was chosen for them.  I wonder if it had anything at all to do with goats?

I walked down to a newly discovered pond very close to the cottage I was staying in.  The pond was sort of ugly and messy looking, very small.  I saw a large turtle sunning itself when I came closer to the pond.  It slid into the water since I was too close for comfort.  I looked at the water through the binoculars to see if I could locate more turtles under the water.  Then I saw him.  I can’ t really know for sure how big he was, since he was just under the water at the edge of the pond nearest me.  The light refracting through the water can make something look bigger than it is.  It was a Snapping Turtle that appeared to be close to two feet long and a foot and a half wide.  He looked far too big to be living in such a small pond.  I watched him for a long time, and when he moved, I was glad he turned away and moved down farther into the pond.  I would not have been interested in him coming my way.

The most meaningful and valuable time on this retreat was the four and a half hours of catching up with a friend from the Oklahoma City area that I hadn’t seen in over thirteen years.  I have to say that John is as close a friend as I have ever had in my six and a half decades.  During the nine years in Oklahoma City, John and I spent many hours early in the morning at Ingrid’s German Deli talking about our faith and journey we were on living it out, John caring for Sherrie, dying of Cancer, and me dealing with the impact of Mary Ann’s Parkinson’s on our household.

When I went on ahead of the family to start serving the congregation in Bethany, Oklahoma, I lived for five months with John and Sherrie, and their children, Hope and Joel.  I cannot imagine more gracious hosts.  Their spirituality was a marvel to behold.  I have been around lots of folks who are committed to their faith, and sharing it with others.  John and Sherrie did it with such genuineness and humility that those around them never were made to feel inferior.

I had the privilege of ministering to and being ministered to by Sherrie as the Cancer entered her life and became the means through which she touched the lives of so many on her way to her death — and life with the Lord on the other side of death.  I had the additional privilege of conducting her funeral, attended by so many that the Sanctuary couldn’t hold them.

If that was not enough, I had the joy of performing the marriage of John and Peggy, as each was led to the other at precisely the right time to begin building a new life together.  It was refreshing to hear how their spirituality has grown and how their life together has unfolded in the years between then and now.

Not only did the retreat provide the refreshment that comes from engaging the natural world at close range, being fed by a meaningful friendship, but I probably accumulated almost twenty-four hours of uninterrupted sleep in those two nights.  This morning there was a gentle rain with soft rumbles of thunder on occasion in the background, providing the perfect setting for lying in bed, sort of semi-conscious, just savoring the moment.

All went well with Mary Ann while I was gone.  Daughter Lisa had some good quality time with her Mom, and Son Micah, Becky and Chloe were able to come over so that we could eat Pizza together tonight.

The time away provided the opportunity to think through how things are going for Mary Ann and me.  As always, there has come a renewed resolve to be more effective as a Caregiver.  Whether that resolve will result in any changes in what I do and how I do it remains to be seen.

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

 

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