September 30, 2009

Be Careful What You Ask For — or Not!

Posted by PeterT under Daily Challenges, Family, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , |
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We asked for sleep, got sleep.  Then got no sleep.  Almost as soon as I hit the publish button after writing last night’s post, Mary Ann woke up and a restless night ensued.  She had been up all day, she was up most of the night last night, up all day today.  I was worried that my decision to increase the Seroquel had initiated a cycle of too much sleep???  No more worries on that front.

I did work at keeping her up today.  She had Small Group Bible Study in the morning, followed by a trip to the library.  This afternoon when she started to doze in her chair, I made the sacrifice of taking her for ice cream — just to keep her awake you understand.  She went to bed a bit early, slept for an hour, and woke up.  She has now taken her night time meds.  She seems to be moving a bit, but at least at the moment, not getting up out of bed.  We will see how the night goes.

Ev commented on last night’s post, reminding me to enjoy the gift of a good night whenever it comes, since folks with LBD or PDD often have bad nights.  It just comes with the territory.  Well said! Our task is to accept that we can’t control or manage this disease.  Very little of what happens can be predicted or impacted by what we do or don’t do.  We need to learn to take what comes, make the best of it, sometimes whine a little about it, and then move on to deal with whatever comes next!

Tomorrow afternoon we will head off for Kentucky to visit our Daughter, Lisa, Denis and the girls, Abigail and Ashlyn.  The girls have a few days off school.  We are taking two days to drive there.  For us, at best it takes about ten hours when done in one day.  Hopefully, this will make the trip a bit easier.

Since this summer’s decline, even though there has been some improvement, we are not going to try to stay in the downstairs room, requiring a trip up the stairs each morning and down again at night.  We will stay in a motel.  That will impact dramatically the cost of the trip, but will be much easier on both Mary Ann and me.  It will be a treat to see the girls especially.

I should have access to a computer while we are in Kentucky, so there may be a post or two while we are on the trip.  Here is hoping the trip goes well for Mary Ann especially.  We have another trip to the Bed and Breakfast ini Hot Springs, Arkansas scheduled for the last week of the month.  It is a lot to tackle, but we have to do what we can while we can.

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!

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

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

 

August 27, 2009

Raccoons: Running out of Names

Posted by PeterT under Daily Challenges, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , |
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Apparently I have miscounted!  It is not only Gus, Belle and the Twins who have been feeding at the wildlife sanctuary that serves also as our back deck.  They eat the food I put out for the birds.  When the fourth one was in the trap two nights ago, I saw another one coming over to commiserate.  Apparently, the twins have an older sibling, uncle, aunt or cousin. 

Yesterday morning, number five was rummaging around in the trap.   I noticed that he had a darker coat of fur than the others.  He seemed a little bigger and somewhat more active.  Tim reported that it appeared to be a very aggressive male.  He had managed to pull the sheet metal holding the handle down into the trap.  He growled at Tim all the while he was handling the trape.  The others had not done so.  We are guessing that it might very well have been Gus. 

I put the trap back out last night, in case there are more.  No one showed.  It is out there again tonight.  My hope is that the entire family is now reunited in the lush corn field to which they have been relocated.   This adventure has been a bit of a distraction for this Caregiver.   I have used the nighttime trips to the commode as Raccoon check time.  Somehow it helps make the usually frustrating nights a little more bearable. 

Just an update on the sleepless nights:  Last night Mary Ann slept like a rock.  She was sound asleep until I talked with her a few minutes before the Bath Aide arrived around 8:45am.  She does seem a bit restless yet tonight, but I am hoping sleep will come soon.  I was up early to prepare for the Spiritual Formation Group that meets at our home at 7:30am.  Tomorrow morning would allow an extra hour or so of sleep.  My hope is that tonight will allow some catching up.  At the moment it is only a hope. 

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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