October 7, 2009

Days Added to Trip.

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After the litany of travel challenges in my last post, we have decided to add two days to this trip!  Are we crazy?  Maybe.  The challenges have continued. Tonight, as I was doing some pre-loading of the car to save time in the morning, I changed shirts to take the one I was wearing to the car.  The moment the door of the room closed behind me, I realized what I had done.  The keycards were still in the room since I had taken them out of the pocket of that shirt.

I was locked out!  Under normal circumstances, the solution would be simple.  Knock on the door and ask Mary Ann to open it and let me back in.  She was lying on the bed no more than five or six feet from the door.  I knocked on the door loudly, calling her.  Finally, I heard her voice.  She told me to wait a minute.  After a short time, I called out to her again.  That went on for a few minutes until finally she said, I can’t get out of bed.

I ended up downstairs at the desk.  The young man behind the counter had to give me a master keycard.  Mary Ann was on the bed on her back simply uable to coordinate getting up to turn the handle so that I could get in.

In the morning, Daughter Lisa will arrive with Granddaughter Ashlyn fairly early in the morning by our standards.  Lisa will give Mary Ann a shower, take her shopping and then to lunch.  I will take Ashlyn on her class trip to the pumpkin patch.  Those activities are the reason for adding one day to the trip.

Since we are only two hours away from my oldest Brother, Dick and his wife, Dee, we decided to travel there, get a motel and visit with them for the evening. That is the second day we are adding.  Neither Mary Ann nor Dee were up to traveling to the family gathering in Northern Illinois this summer.  This is a chance to make up for missing that time together.

The next two days will reveal whether or not it was wise to extend the trip.  So far we have dealt with the problems encountered as they have arisen.  My hope is that whatever is yet to come will be manageable.  We will take it one day at a time.  Gratefully, that is exactly the rate at which it comes, whatever it may be.

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 5, 2009

Is Traveling Worth the Trouble?

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First hugs from the Grandchildren answer that question.  It just isn’t easy!  Of the many things that are more difficult when traveling as a Caregiver, one of the most frustrating is the sole responsibility for packing. 

I remember hearing from single parents and those who have lost their spouse in death one of the most difficult challenges is making all the decisions without access to consultation.  There is no one to ask, should I let the kids do this or not — should I do that repair on the house? 

When packing for a trip, each has a certain amount of responsibility for remembering what to bring along.  There are endless decisions to be made.  What clothes should we bring so that we can be fitting for weather and formality of events.  If we bring one color/style of shirt or top, there need to be shoes and socks and slacks to match. 

Decisions are tough to make at best when one has the beginning stages of dementia and the other isn’t exactly on his best game.  I asked Mary Ann what she wanted to take along.  She wanted what I call her fancy pants and top.  The most hated black shoes with short heels are a part of that outfit.  I hate them (not too strong a word) because they are treacherous for her to walk in and they refuse to stay on her feet — I am chasing them constantly.  Their favorite trick is to pop off midstream in getting on or off an elevator, going in or out of a door.  Maybe it was due to a subconscious aversion to them that resulted in my forgetting to put in the knee high nylons that she wears with them. 

I work very hard at creating and sustaining certain rituals associated with medication so that there are no missteps in having what is needed, and administering it on time each day.  There are, of course, multiple prescriptions, many including more than one dose a day.  There are four compartments in each day’s plastic pill holder.  The morning one has six pills, the next one has six pills spread through the day, the next compartment has three pills spread through the day, and the night time compartment holds four pills.  There is also a powder to mix with water or juice four of the seven mornings each week.

All of it was in order for the trip, along with all the meds needed to refill the compartments for the last half of the trip.  At least that is what I thought to be true.  Saturday, after returning for the night to the extended stay motel, I began filling the compartments.  To my horror, there was no pill jar of Midodrine there.  That is the powerful med that raises Mary Ann’s blood pressure to keep her from fainting.  To stop cold turkey the next morning would be dangerous.  When I have adjusted that med in the past, the doctor has insisted that the dosage be raised or lowered a small amount at a time over many days. 

What had happened?  I had broken ritual.  The caps of the medicine bottles are numbered (Mary Ann’s idea many years ago).  Refills not yet in use have no numbers on the top.  I transfer the old cap to the new bottle when the old one is empty.  I had not put a numbered cap on the new refill of Midodrine already in use.  I grabbed only the numbered cap bottles.   

As I sat there Saturday night, looking at the pills, my panic shifted quickly to planning.  I am grateful for the national database maintained by Walgreen’s Pharmacy.  I phoned the nearest 24 hour Walgreen’s here in Louisville, KY.  They accessed our account in Kansas.  While we normally use mail order meds, the recent change in dosage had required a short term prescription at Walgreen’s.  There was a current prescription that could be filled here to rescue us from our distress. 

After I phoned and was told the refill would be ready in 45 minutes (about 11pm), I resumed filling the bottles.  To my chagrin, the Thyroid med bottle only had two pills left in it.  I suspect you can imagine just how horrified I was at my own incompetence.  This morning I suggested to Mary Ann that she might want to trade me in on a more competent Caregiver. 

This med will demand a new prescription from the doctor, since we have only the mail order prescription open.  The request is now in the hands of the Pharmacist who has assured us that by tomorrow afternoon it should all be worked out.  Gratefully, the two pills will cover Mary Ann until then.

The other travel trouble is less appropriate for publication.  It is in the area of the Caregiver’s role in waste management [see earlier post].  There has been a difficulty in that area demanding my hands on involvement for three days now, with two or three sessions each day.  Those problems seem much more troubling when dealt with away from home.

Since there is a need for a handicapped friendly environment in which to stay, the costs of traveling have increased dramatically.  Staying with folks in their home, no matter how gracious and welcoming they are, is often simply not an option.  Lodging costs add up at a frightening pace.  A trip that we have in the past made in one day, now demands an overnight stay, adding still more to the costs. 

It is a little embarrassing just how long it takes us in the morning to get ready to leave the room so that we can start the day’s activities.  The usual multiple times up at night make early rising a less than satisfying option.  The result is that there is not so much time for doing things together each day, the object of the travel. 

While this is a litany of struggles that come with traveling, the hugs more than compensate –  the smiling, enthusiastic little faces drain away the frustration and replace it with joy and satisfaction. 

Is traveling worth the trouble?  Yup!

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 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 29, 2009

Be Careful What You Ask For — Titrating Meds

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First there was little sleeping, then there was a lot of sleeping.  Not only did she nap for over five and a half hours during the day yesterday, she went to bed earlier than usual, slept through the night, and was slow in getting up this morning.

The question in my mind this morning was, have we increased the Seroquel too much.  Will she now be sleepy all the time and move to a lower quality of life on account of it.  Is my decision to add another 25mg of Seroquel hurting Mary Ann?  When we saw the Neurologist last, he increased the dosage by 25mg and said that if the increase was not enough to deal with the hallucinationa and restlessness at night, I could raise the dosage another 25mg.  That is what I have done.

While I don’t yet know the answer to my question about whether or not the increase is too much, today she has stayed awake.  Tonight when I asked about it, she said she was tired all day.  Her tiredness could be the result of the Seroquel.

It is so very difficult to adjust the medicine to just the right amount, what the doctors call titrating the dosage.  The variables are many and complex.  Sometimes it takes a while for a change in dosage to have effect.  Different people don’t always react the same way.  Seroquel is a potent drug.  There are risks, serious risks.  Probably the most serious problem that can emerge is Neuroleptic Malignant Syndrome [NMS].  If I understand correctly, that problem very quickly can cause death.  It is an uncommon side effect of the drug, but nonetheless a risk.  Again, if I understand correctly (disclaimer: I am not a doctor), stopping Seroquel suddenly can also trigger serious problems.

Starting new meds, stopping meds, changing the dosage is like running through a grove of thornapple trees.  Someone might get hurt.  Mary Ann is always involved in the decision-making on the meds, but generally, she trusts my judgment on what she should take and when.  She is pill averse, so she takes as few as possible.  She will on occasion simply refuse to add more.  Most of the time she accepts what the Neurologist prescibes, and what I recommend.  That is not a responsibility that I relish, but, like it or not, it comes with the territory.

Caregivers often have a great deal of responsibility for how their Loved One does.  We are the ones who have a daily awareness of how things are going. Good doctors listen to us and take into consideration what we think is needed.  Again, that is a lot of responsibility to have.

I asked for help with Mary Ann’s (and my) sleepless nights and the disturbing hallucinations.  I asked.  The answer was to increase the Seroquel. I may have gotten more than I asked for.  This morning I was very concerned, actually, I was scared.  At the moment, since she was awake all day, I my concern has been mitigated a bit.  We will see how tonight goes.  The information on Seroquel suggests that the drowsiness that comes when it is first taken often diminishes.

What we both long for is for Mary Ann to be awake during the day, and asleep at night.  Is that too much to ask?  Probably, but we can 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.

 

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!

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.

 

September 26, 2009

Caregiver’s Self-Care

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She is cute as ever!  We were dressed to the 9’s (whatever that means) for the church’s new directory pictures.  My contribution was to wash Mary Ann’s hair: the rest is in her genes. That combined with her ability to stop eating when she is full, has kept her slender and very nice looking.  As is apparent in the picture, I married up. 

I, however, have combined genes (Dad) and a seemingly uncontrollable appetite (Mom) to produce enough stored energy to last many weeks were I to end up on a desert island with no food.  It has, of course, gathered in the worst place for increasing the likelihood of numbers of diseases of the aging.  What is in my favor is a family history that for the most part does not include Cancer, Heart Disease or other life threatening diseases.  Most everyone in my immediate family has died of old age, or is still living.

That family history does not impress my Cardiologist.  Nor does it help me tie my shoes, or avoid the endless shrinking of clothing in my closet.  My shoes still fit!

On the spur of the moment, I went to a local Physical Therapy Center for a free consultation introducing a weight control program including both dietary counseling and an exercise program.  I liked everything about it (except the diet and exercise parts).  There was even the possibility of something that might benefit Mary Ann while I was doing the exercise program at the facility.  Then came the “other shoe” as they say.  The numbers took my breath away.

I need to stay healthy since I am not the only one who depends on my health and well being.  My health is more important than having a bunch of money in the bank.  One problem is that the bunch we have is of a size that a great deal of care needs to be taken when spending it.

There is a simile that I find very useful and use often.  Some things are like putting out a match with a fire hose.  I am not sure the amount I need to lose is worth that much money.  I would be right in the middle of normal on the weight chart if I were only six inches taller.

The truth is, the chart I am looking at puts me just past the line between overweight and obese — just barely, but obese.  Charts vary, and in some I am not categorized quite so harshly.  Nonetheless, clearly there is need for better habits and a lowered risk of problems emerging.

One of Mary Ann’s Volunteers has access to lots of health information, and has found a book that offers one approach to developing healthier habits.  She brought the book over early this evening.  The Cardiologist’s nurse had given me a copy of my blood work with the instruction to double the cholesterol lowering medication I am taking, Today, I received another copy in the mail, this time from our GP who got the same blood work report.  Today’s copy included a handwritten note, “LDL is too hight, needs to be around 100; work with exercise and diet.”  Of course in the last couple of weeks more studies have been published suggesting that belly fat increases the likelihood of getting Cancer, Heart Disease, Dementia, and Type II Diabetes.

A contributing factor to all of the above diseases is serving as a Caregiver.  The statistics are not good for those of us in a Caregiving role.  There are some things that cannot be changed.  I suppose common sense suggests working on changing those things that can affected by the choices made.

All of this comes after receiving the cooler from Omaha Steaks yesterday (a great sale), and enjoying the buy one, get one free Blizzard at Dairy Queen this afternoon (it was the annual anniversary gift for signing up online to join the Blizzard Club).

Rest assured, if there is any change in diet resulting from all this, or any exercise added into my daily activities, there will be whining in posts yet to be written.  Consider this fair warning! 

By the way, it feels good to have our Christmas shopping done for our children.  They will receive fresh new pictures of their parents to replace the old ones in the shrine.  We are so thoughtful.

It appears that tonight will be another tough one.  The raccoons are back in the bedroom.  Mary Ann wants me to call Animal Control.  I hope she can settle soon.  We will see what the night brings.

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 24, 2009

Embarrassed!!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , , |
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Could our timing have been worse??  I think not.  We rolled up the sidewalk just in time for the pastor to open the doors for the pallbearers, readying themselves to carry the casket to the coach. The family was lining up behind the casket.

We just scooted in the open door, past the pall bearers and the family to the other side of the lobby as the funeral home staff ushered out of the Nave of the church those who had come to attend the funeral.  It was the epitome of bad manners.  Sometimes it is not better late than never!

Actually, I pretty much expected that we would embarrass ourselves when we left the house.  The funeral was at 10am.  We left the house at 10:20am with about a ten minute drive to church, depending on the stoplights.  Mary Ann had to take some medicine before we headed toward the door.

The decision was either to embarrass ourselves by arriving at the end of the funeral, or not going.  Mary Ann’s bath aide has a schedule of clients to see each day she works.  It is not a simple matter to just ask that she come earlier, throwing all her other clients off their schedules.

When there is a chronic illness like Parkinson’s that has entered the family, there are consequences.  Among them is the loss of the ability to make and keep plans, to accommodate to external demands.  The disease often rules the schedule.

Having served as Pastor of the congregation for over twelve years, I had known the deceased and family for a long time.  There had been some very challenging times in the family’s story during those years.  I was involved in that story.  This was a chance to see some of the family who had come from very far away.  I could have written a note explaining why we couldn’t make the funeral.  That just did not seem okay to me.  Charlotte had served as a Volunteer with Mary Ann, I had confirmed some of the grandchildren.  I had done a couple of weddings for the family.  The connection seemed too strong to accept that we couldn’t get to the funeral.

I decided that in spite of behaving badly by coming in at the end of the funeral, and the embarrassment that would come with it (embarrassment is a most hated enemy to me), I would not give up the chance to have a few minutes with members of the family.

We had had some practice with this sort of embarrassment when we decided some time ago to go to a morning worship service instead of the evening service. That Sunday morning we arrive in plenty of time to attend the 11:30am service.  The service, of course, is and always has been at 11am.  We had to roll past a group of folks standing on the sidewalk by the door to church.  They had gone to an earlier service and were just socializing as they were heading to the parking lot.  Again, I knew we would be late, but I wanted to hear a newly commissioned Deacon preach (he was great!).  We had a commitment that evening that would not allow us to attend the evening service.

Chronic illness has consequences in day to day life.  Sometimes embarrassment is one of them.  As I have mentioned before, eating in a restaurant often provides opportunity for embarrassment as food often ends up where it is not intended to go.  Using public bathrooms always provides opportunity for embarrassment as I have to find someone to watch the door of the women’s restroom while I help Mary Ann, fearing all the while that someone will come charging in, horrified to see a man in the women’s restroom.

One of my personal challenges is to refuse to give my hatred of being embarrassed the power to control our choices.  We need to be out with people.  One thing our circumstances have taught me is to be less judgmental of others.  Who knows what they are going through, when they do things that seem to be in bad taste or thoughtless or inappropriate? Who knows what they are going through?

Embarrassed?  Yes!  But we’ll live.

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 23, 2009

Carotid Artery/Heart tests — No results yet.

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , |
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Warm gel is a good thing when having an echo-cardiogram and a carotid sonogram.  Yesterday was Mary Ann’s every six month check of the lesion in one of her carotid arteries (the ones in the neck that supply the brain with blood), and her every six month check of her heart, the valves and general condition.

The tests happen so regularly since at some time, should the lesion in her carotid artery grow past a certain point, the question of surgery will come up.  She has already had one stroke, probably caused by bits of plaque sloughed off from that lesion.  The most we can hope for is very little change in how much of that artery is blocked.  I will admit that neither Mary Ann nor I am much interested in a major surgery.  We would certainly discuss the option.  I would not presume to know for sure what Mary Ann might want to do if surgery is suggested.  Her Mom had it when she was in her 80’s, and she did very well.

What the echocardiogram shows could have some impact on medications.  It was interesting to watch the med tech do the test.  She had a student with her.  She described what she was looking at to the student as she pulled up each view of Mary Ann’s heart.  I had a great view of the screen during the entire test.  It was helpful to me to hear her point out and name the parts of the heart on the screen.  Having watched the screen for the last few echo-cardiograms, I am getting fairly familiar with the images on the screen.  It helped this time to have a running commentary on what I was seeing.

What was especially interesting was a little mini-drama, as the med tech was describing what she was seeing to the student.  At one point there is color added to the screen.  The red indicates blood coming toward the probe, the blue indicates blood moving away from the probe.  When the med tech was checking the valves using the color mode, her voice lowered as she spoke to the student.  I inferred that the movement of the colors was indicating leaking valves and she did not want to break protocol by revealing that within Mary Ann’s and my hearing.  I had been quiet (unusual for me) until then.  I decided to relieve her distress by mentioning Mary Ann’s problem with leaking heart valves. The med tech’s response indicated my assessment of her reaction had been correct.  Up to this point, the leaking is not severe enough to warrant raising the surgery option.

Both Mary Ann and I had blood tests a week ago.  Her orders came from our GP (thyroid and cholesterol check), mine came from our Cardiologist (cholesterol).  Mary Ann is the one with problems, right?  Her numbers were great!  Mine produced a message from the Cardiologist to double the dosage on my cholesterol lowering med.  Mary Ann’s annoying ability to stop eating when she is full, as well as her distaste for leftovers and much of what I cook, seems to be serving her well in the blood chemistry department.  My inability to stop eating until everything is gone on my plate and all the containers on the table, does not serve me so well in the blood chemistry department.  I suspect a program of improved diet, exercise and weight reduction is in my future — perhaps I should have a snack and lie down until that thought passes.

We got a copy of the written results of our blood work yesterday after the tests were done.  Mary Ann’s results revealed the continuing reduction in her kidney function.  The surface of her kidneys has hardened due to decades of high blood pressure.  If you have read earlier posts about her struggle with Orthostatic Hypotension (low blood pressure when standing, producing fainting spells) you will catch the irony.  She is now taking medicine to raise her base blood pressure to reduce the problem of her BP lowering too much when she is standing and walking.  If I am reading the lab report correctly, she has just moved into stage three of five in her Chronic Kidney Disease. The good news is that we all have so much kidney capacity that it could lower to 30% of full functioning without becoming dangerous. When I include that sort of information, remember that I am not a doctor.  Don’t take my word for it. A few years ago a very candid Nephrologist told us that Mary Ann would likely die with Chronic Kidney Disease, not of it.  At that time we all agreed not to treat the kidney disease since the treatment would make the fainting worse by lowering her blood pressure.

As the tests were going on, I thought about how scary all the test results can be.  When we first were told about each of the problems, there was that feeling in the pit of the stomach that the end might be nearing.  After years of monitoring the results of the tests, it is just more information confirming what we already know.  Even if there is something new, Mary Ann has faced down so many medical problems for so many years, we just take it in stride.  Mary Ann could die in ten minutes, ten months, ten years, or more.  So could I.  Death lives just on the other side of life.  Coming to terms with that provides a sense of peace, and affirms the sweetness of the life we have at any given moment.  Our spiritual foundation steals from death its ultimate power to destroy.  Neither of us longs for it.  We both recognize the pain that is left to those we leave behind.  At the same time, we recognize our mortality and have learned to live with 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 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: , , , , , , , , , , , , , , , , , |
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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.

 

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