April 21, 2010

New Twist – Hopefully Nothing Significant

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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Mary Ann lay down after lunch for a nap.  The moment she is settled in bed, I start doing tasks inside or outside, confident that she is very likely to sleep for a couple of hours without stirring.  Not so this afternoon.

When I came back in, her eyes were open.  She said that her esophagus hurt and she needed a Tums.  It seemed to be hurting more than usual.  She used the bathroom and had a fainting spell immediately after I put the Tums in her mouth.

The pattern we use is that Tums comes first.  If it does not help, a Nitro pill comes next.  If that hasn’t eliminated the pain in five to ten minutes, another Nitro pill is taken.  She has to be lying down for that since Nitro pills lower blood pressure dramatically.  Since she had just fainted, it was apparent that her BP was already fairly low.

Hospice Nurse Emily came to the door for her weekly visit as we were waiting for the Tums to work.  Mary Ann said that it seemed to be helping.  The new twist was that when Emily checked her oxygen saturation level (98%, very good) and heart rate with the finger monitor, Mary Ann’s heart rate was 111, almost double her normal, which is about 59 or 60.  Nurse Emily took her blood pressure, which was in a reasonable range for Mary Ann, 150/96.  It is always a puzzle that it can be that high just minutes after she has fainted from a drop in blood pressure.  She had stood up and sat down when the fainting happened, but she was lying down when Emily took her BP. Blood pressure usually measures higher when lying down than when sitting or standing for anyone..

Nurse Emily measured her heart rate a second time, and it had come down to 85.  After Emily left, Mary Ann said it was hurting again.  I gave her a nitro pill.  Her heart rate was over a hundred.  After a little less than ten minutes, her chest/esophagus was still hurting.  I gave her a second Nitro pill.  About ten minutes later I checked again.  By that time she said the pain had subsided.  I took her blood pressure at that time and it was 110/50.  As expected, the nitroglycerin had lowered her BP.

The concern, of course, is an unexplained increase in her resting heart rate.  I just pulled out the three pages of information on Cipro.  One of the bullet points under “Other serious side effects of Cipro include” is “Serious heart rhythm changes”.   The next sentence is, “Tell your healthcare provider right away if you have a change in your heart beat (a fast or irregular heartbeat), or if you faint.”  Okay, Nurse Emily was here when the heartrate was almost double her normal.  It did not seem to strike her as significant.  As is so with anyone who has been a Caregiver for a while, I never give away responsibilty for Mary Ann’s medical care.  I will check with Mary Ann periodically tomorrow.  If there is any discomfort I will check her pulse.  If it is racing, I will call Hospice to check with their doctor about how to proceed.  Since Mary Ann’s and our intention is that she not be resuscitated (those words are hard to see appear on this page as I write), we have to be thoughtful in how we proceed.  (Mary Ann has not yet had a chance to sign the DNR form in front of a non-family witness yet — not sure whether procrastination or denial on my part.)

She has been fine the rest of the day and is now in bed, hopefully, for the night.  She went to Bible study this morning and, according to her report, stayed awake.  She had lamented when she first got up this morning that she sleeps so much during the group time, that it seemed fruitless to attend.  She then admitted that getting out with people was good, and that was the only regular time with others she had.

I had an especially good time during the Bible Study,  I had a chance to talk for a time with a cluster of the staff with whom I worked at the church from which I retired.  I realize just how much I miss having those folks to talk with.  When there was some experience or encounter, one of little consequence in the grand scheme of things, it was nice to have some place to report whatever it was.

I headed over to the coffee shop (of course, PT’s) and ran into one of the owners I have known for many years.  As usual, he had just returned from another part of the world where coffee is grown, this time somewhere on the continent of Africa.  He is always entertaining.  I followed that with a visit to the Wild Bird House.  There I could review the experience with the Mallards yesterday and hear some stories about rahabbing ducks.  I didn’t realize that bullfrogs ate ducklings — not a pleasant thought, but interesting to know. Melody rehabs the birds, and Todd is a sort of Renaissance man, who plays in a group and teaches guitar, creates websites from scratch, and builds decks, as well as running the store with Melody. He and I talked deck issues — my bowing crosspiece.

We headed for the store, loaded the car with gas and the back seat with half gallons of ice cream, as well as Mary Ann’s Sesame Chicken dinner.  That is the lunch following which the problems began.  She had the same for supper without any discomfort, at least yet.

This afternoon, while Mary Ann was having problems and then napped, I took on the task of taking up the Snap-Lock mesh flooring in the bathroom to spread out on the driveway, spray with a fungicide, clean with a broom and bathroom cleaner wih bleach in it.  It is  a dreaded job.  The ceramic tile in the bathroom beneath the mesh gets the same treatment.  Tomorrow, Kristie will come and do her monthly cleaning.  This time she will also clean the ceramic tile now that it is uncovered. (The mesh is on the floor to avoid Mary Ann being hurt badly when she falls.)

This evening, Volunteer Jolene came to stay with Mary Ann.  I used the time to do a few things here at the house and then headed to Dairy Queen to take advantage of this week’s special — buy any size Blizzard at full price and get the same or smaller sized second Blizzard for 25 cents.  They are celebrating the 25th birthday of the Blizzard.  We are happy to help them celebrate.  After eating the Blizzards, I headed out again to check on getting a roll shade for the east end of the deck.

It was a full day for both of us. The central concern is Mary Ann’s heart rate.  Since she had a number of silent heart attacks that we missed seven or eight years ago, I do not take this lightly.  Those heart attacks were masked by what we thought was esophagus pain.  It certainly never gets dull around here.

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

 

April 20, 2010

Infection Diagnosed

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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I have to wonder how long this has been going on.  I wondered about it right after coming home from the hospital last November.  There were none of the usual symptoms that were different from the symptoms of the problems already diagnosed and being treated.  It seems unlikely to me that such an infection could have been going on since November, although there is a chronic version of this diagnosis.

Hospice Nurse Emily phoned shortly after lunch time today to report that Mary Ann’s urine had tested positive for a Urinary Tract Infection [UTI].  In fact it is apparently a fairly serious one.  She reported that the doctor had insisted that Mary Ann manage to get in both the morning and evening doses yet today.  We have now done so and Mary Ann is in bed.

The medication is an anti-biotic called Cipro.  It is a strong anti-biotic whose sheets of warnings and side-effects (three pages of small print) read like a Stephen King novel.  The good news is that the Hospice doctor has a current list of all Mary Ann’s meds and a chart that includes all her medical problems.  The Hospice Staff have regular Team meetings on each patient.  It is a fairly small Hospice organization, serving only about thirty patients.  We regularly get a copy of the Team meetings.  Each report includes hand-written notes by each member of the team, including the doctor.

It certainly is a challenge to discern the signs of a UTI when every one of them matches something that is normal for someone with Parkinson’s Disease, Heart Disease, Parkinson’s Disease Dementia (a Dementia with Lewy Bodies), Hypertension, Orthostatic Hypotension, Chronic Kidney Disease, Hypothyroidsim, Urinary and Bowel Incontinence, a stroke victim who has also had a life-threatening bout with Pneumonia.

Here is an interesting item on the list of those symptoms that are often indicators of a Urinary Tract Infection:  “Mental changes or confusion (in the elderly, these symptoms often are the only signs of a UTI).”  Imagine trying to catch that symptom in someone with a Lewy Body Dementia that has as its central symptom, mental confusion that comes and goes.

On the Medline Plus web site from which I got the information in this post there is a list circumstances that increase the likelihood of getting a UTI.

The following also increase your chances of developing a UTI:

  • Diabetes
  • Advanced age (especially people in nursing homes)
  • Problems emptying your bladder (urinary retention) because of brain or nerve disorders
  • A tube called a urinary catheter inserted into your urinary tract
  • Bowel Incontinence
  • Enlarged Prostate, narrow urethra, or anything that blocks the flow of urine
  • Kidney stones
  • Staying still (immobile) for a long period of time (for example, while you are recovering from a hip fracture)
  • Pregnancy

Mary Ann is not pregnant, does not have a prostate gland or kidney stones, nor is she diabetic, but all the rest fit to one degree or another.

I will admit that this diagnosis seems like good news in the sense that it provides a glimmer of hope for some positive change.  Mary Ann declined pretty dramatically after her hospital stay (during which a catheter was used).  It would be wonderful to be surprised by improvements coming with progress in treating the UTI.

Mary Ann (and I) got a pretty good night’s sleep last night.  She seemed to be doing somewhat better today but still had some confusion periodically.  There was a little more of the fainting and bowel activity.  She had a nap of a couple of hours during the mid-day.

We had a special treat today.  This afternoon Pastor Mike and Judy came to visit for a few hours.  They are warm and caring, as well as strong and intelligent people who have made their mark for great good in a central city area in Kansas City, Kansas that has had all the struggles that often come with older city neighborhoods.  I have tremendous respect for them as they have stayed engaged with and present in that community for decades.  Without fanfare or tangible rewards they have continued to serve in creative ways people sometimes gasping for air just to keep from drowning in a sea of failed attempts at trying to get by on their own.

We have known Mike and Judy since the early 1970’s.  I was a few years ahead of Mike at the Seminary we both attended in St. Louis.  Mary Ann and I have  listed Mike as the requested preacher at our funerals.  He and Judy have known Mary Ann since before the Parkinson’s.  As well as the personal fondness we have for them, they share with us an understanding of church that is deeply rooted in some core faith issues.  We have great conversations.  Judy especially made a point of talking with Mary Ann one on one, so that Mary Ann’s thoughts and words were not lost in the energetic talking of three others.

After spending time at the dining room table talking with Mike and Judy, we moved on to the deck.  It was a glorious day here, about 70 degrees and abundant sunshine.  As we sat on the deck, the pair of Mallard Ducks wandered back and forth, in and out of the waterfall, munching at the ground level platform feeder a few times.  They just sort of hung out with us, maybe twenty feet away.  The birds were singing their spring songs probably meant to impress some potential or current mate.  At one point a black Grackle (with that shiny deep blue head), Blue Jay, Cardinal and bright yellow Goldfinch were in view at the same time in the branches or on the ground in the immediate area.  A couple of Robins were nearby also, as well as the Mallards.  It always strikes me that colors no designer in his/her right mind would put together in the same space, work very well when in proximity in a natural setting. It would seem there might be some other artist at work weaving colors together.

Yesterday, our system here seemed on the verge of becoming impossible to sustain.  A good night’s sleep, some time during Mary Ann’s nap to get a few sort of recreational chores done (filling bird feeders, more weeding in the waterfall area), relaxed time visiting with good friends, has pulled us from the verge of impossible back to possible.  Since we live in a fairly small space between possible and impossible, I will not venture a guess as to where we will be tomorrow.  We will deal with that when tomorrow becomes today. Speaking of which — it is time to go to bed.

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

 

April 14, 2010

Tons of Birthday Greetings

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , |
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This Face book business adds a whole new dimension to life.  I don’t think I have ever been wished a happy birthday by so many.

The morning began bright and early with cards from the Spiritual Formation Group members and a cherry and apple kuchen.  Before the group meeting was over, my Sister Gayle called and sang happy birthday to me.  There were more cards in the mail, in addition to a few yesterday.  We had no special plans, except, of course, some ice cream from Baskin and Robbins late this afternoon — but then every day is an ice cream day.

The last three days have been pretty active ones.  On Monday, after Bath Aide Zandra came, Mary Ann’s friend Jeanne came, brought lunch and then spent the afternoon.  Mary Ann had some time out outside in the beautiful weather.  During that time, I ran errands, including a trip to see Dr. Tim about manipulating my back to help with the consequences of Saturday night’s challenges with Mary Ann’s fainting.  Volunteer Patrice came to spend the evening with Mary Ann. I combined a few errands with some time sitting in what had been a favorite spot for quiet time.  The area has changed and it seemed to have become everyone’s favorite place to drive through.

On Tuesday, Mary Ann did well in Bible Study.  We picked up pizza slices for Mary Ann to eat for lunch, then went to see Doug and Marikay for haircuts.   It had been so long that he needed to use hedge trimmers to cut my hair!  We always enjoy the conversation with those two.  We share a love of the outdoors and wildlife.   Following the haircuts we went right to the grocery store.  I marvel at how much we buy just to feed the two of us.

Volunteer Shari came for the evening.  After a couple of little errands, I spent time again parked in the beautiful spot nearby.  For some reason there was very little traffic that evening.  It was a beautiful night and a wonderful experience.  A CD of choral music titled “Shakespeare in Song” by the Phoenix Bach Choir provided stimulating and exciting choral music, lifting my spirit.

This morning toward the end of our group time, Bath Aide Zandra came.  Mary Ann was still in bed and asleep when Zandra arrived.  Later in the morning, Hospice Nurse Emily came for her weekly visit.  Then Volunteer Cynthia came for two and a half hours, followed by Volunteer Rebecca who stayed another two and a half hours.

During Cynthia’s time with Mary Ann, she did the ironing!!! God is good!  So is Cynthia!  Also during that time Sheila, who does landscaping for folks in the area came by to do her every two week clean up.  She did some clean up on the waterfall to tide us over until Brad comes by for the official spring refreshing of the plantings.

During Rebecca’s time with Mary Ann, I got a major errand run, all the useful remnants of the clean up taken to Good Will.  Then came supper, followed by ice cream, followed by Mary Ann going to bed.   Doug and Marikay stopped by to deliver some salmon they had smoked for us and to see the new sun room.

Both of our Kids, Lisa and Micah made their Happy Birthday calls.  All in all, it has been a pretty good three days for both of us.  Last night when I sat down to write a post, I fell asleep at the computer.  I decided I needed to get to bed.

Now that I mention it, my head has been bobbing as I have been sitting here writing this. Thanks to all who sent cards or Face Book greetings.  It made the day a very special one.

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

 

March 31, 2010

Will They Return?

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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The birdfeeders are back up.  Will they return?  Other than the last time we had a snowfall (birds are fowl weather friends — sorry, bad pun), there have been few birds.  There has been too much activity with the construction.  Now that it is done and the bird feeders are back up, will the birds find their way back?

They will need time.  Birds can be very fickle.  If there is not food available when they want it, they will just find their way somewhere else that is better stocked.

Since the weather is so warm and the deck is finished, we are going to try having the Wednesday morning Spiritual Formation group outside.  We begin at 7:30am.  It is likely to be pretty chilly then, but it should warm up quickly.  There will, of course, be lots of hot coffee to warm our insides.

The workers completed most of the last tasks in the remodel job.  The cork floor is now laid in the sun room.  The screens are in, so we could keep the door open for most of the evening tonight.  The sound of the waterfall is loud and clear when the new sliding glass door is open. Everything looks better than I had even imagined. I spend as much time standing on the deck this evening as I could while still keeping an eye on Mary ann.

Mary Ann had a difficult first half of the night last night and slept in until about 11:30am.  During that time, CPA Twila came by with very good news on our taxes.  Retiring and not being able to work part time has the beneficial side effect of pretty much eliminating any tax liability.

Mary Ann ate breakfast at lunchtime.  She decided that she wanted scrambled eggs, bacon and toast.  I managed to get that accomplished, even adding some shredded cheese to melt on top of the eggs.  Volunteer Tamara had brought us a dozen farm eggs last evening, the ones with the deep yellow yolks.  They are wonderful.

After a hearty lunch, Hospice Nurse Emily stopped by.  Mary Ann’s blood pressure was high as usual, 172/108.  There was a little fainting.  in the morning. The daily task I thought had come to a conclusion continued today.  Mary Ann has been eating pretty well lately, and the intestinal activity reflects that.

Mary Ann wanted Chinese (Sesame Chicken) from the Chinese food counter at the grocery store.  After eating a healthy portion of the rice and the chicken (and Crab Rangoon), she ate about 60% of the two scoop treat from Baskin & Robbins that she had declined when I brought it home last night (too close to bed time).

She folded shortly after supper and headed to bed.  I need to get to bed also, since preparation for the morning group begins early.

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

 

March 29, 2010

The Power of Touch

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , |
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Don’t worry, this post is barely rated PG.  A prior post was rated PG-45.  That was to make clear to our children that it might contain too much information about their parents love life.  Since I am a Pastor, we, of course, had our children by virgin birth.

Before talking about how touch has impacted Mary Ann and me in recent history, today was in some ways a continuation of yesterday.  Her blood pressure was 180/100 first thing this morning.  There is no way I would consider giving her medicine to raise her blood pressure given that reading.  Even with BP that high, there was a little fainting in the morning.

Volunteer Edie spent the morning with Mary Ann.  There were no problems with fainting.  After lunch the challenging intestinal activity resumed for a while, except for the fainting.  That task is more manageable when there is no fainting.  I am longing for the resumption of more normal regularity, demanding less assistance.

One of the unexpected benefits of Mary Ann’s illness is that it demands more touching.  I grew up in a non-touching family.   I was well into my thirties before I greeted Mom with a hug when visiting.  Before that it was hi to Mom and a handshake for Dad.  Gratefully, through a variety of circumstances that changed, especially with our children.

When a marriage has caregiving added to the relationship of husband and wife, there is an intimacy that grows of necessity.  I am holding Mary Ann many times a day.  My arms are around her to move her, lift her, shift her, dress her.  Prior to the addition of the caregiving, we were not very demonstrative and openly affectionate.  Now, I often linger with a hug when doing one of the tasks that requires putting my arms around her.

I have little doubt that there is an intimacy in our relationship now that we might never have experienced without the needs brought by the Parkinson’s and the complications that have come along with it.  Of course, neither of us would have chosen this way to add intimacy to our relationship.  It is sort of like finding a pearl in a pile of poop. (Am I not poetic!)

Last night and this morning were helpful times for me Spiritually.  With the complexities of Mary Ann’s personal needs, her napping, the vagaries of the blood pressure and dementia, we have not gotten to church very often.  Private devotional time does not substitute for corporate worship which provides community and an encounter with the core message coming from every direction.  Time alone with tools that help focus one’s heart and mind on the presence of God is an important mechanism for Spiritual growth.

Last night, the computer provided access to music that became a means through which the message of God’s unconditional love washed over me.  There was some Taizé music.  The there was a group named Anuna (sang in Riverdance).  Much of their music is ancient church liturgical music.  I played again the CD that includes “The Deer’s Cry,” which is an arrangement of the St. Patrick’s Breastplate prayer with which he began each day.  During the time I was listenting to the CD, I turned the lights in the house off, except for a votive candle on the mantle in front of a small iron Celtic Cross, casting a shadow on the wall.  Those are helpful times that allow my spirit to settle.  It was a help after the difficult day yesterday.

This morning at the lake, I listened to more of Anuna and some more Taizé music.  There was a passage from Jeremiah (29:11-14) and a couple of Psalms (100 and 101) that provided some grounding for the morning’s music and nature watching.  There were only a few birds, but the sounds of frogs and little critters of one sort or another filled the air as I walked along a marsh area (reminiscent of my childhood days playing at the swamp).

This afternoon, I had a little time during one of Mary Ann’s naps to sit out on the deck for the first time since the remodeling began a few weeks ago.  The signs of spring are slowly coming into view.  We do not have a secluded cabin in the woods, but as the leaves come out and the greenery flourishes, the little space at the back of our home will provide some of the nurturing environment I need to stay whole in a very fragmented and disjointed world in which I have very little say about what goes on.

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

 

March 28, 2010

Exhausting Day of Fainting

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , , , , , , , , |
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It has been a very long time since there was so much fainting in one day.   Anyone who is not okay with explicit talk about BM’s should probably pass on this post.  I was grateful for a three or four hour nap in the middle of the day and more grateful when the ordeal was over this evening and bedtime arrived.

I am a seasoned veteran in what I call waste management.  It is just part of helping someone who no longer can handle those duties on her own.  I am used to the fainting spells.  They no longer scare me.  It is when the two intertwine for all the hours she is awake that it calls into question my physical capacity to do this task.

I am not grossed out by it.  I am not pushed to a high level of frustration by it.  I am just tired and sore, grateful for a break from it now that she is in bed.  Yesterday, I mentioned that Mary Ann’s blood pressure was a very low normal when the Hospice Nurse took it.  I observed that resting blood pressure that low did not bode well for what might be so when she stands up for a while.

I meant to take her BP this morning, but did not remember to do so.  As a result, I am not sure yet about whether or not to start the Midodrine, which raises her BP and reduces the fainting but keeps her BP dangerously high.

Mary Ann got up fairly late today.  It was apparent from the morning trip to the bathroom that the fainting was a problem.  We managed to get her breakfast done.  Then the bathroom trips began.  She felt that she needed to go, but there was little production.  Each time she got on the stool, she fainted.  Each time she stood up from it she fainted.  My role, as I have mentioned before, is to hold her upper body back so that she does not fall forward off the stool.

She was fainting so much that she couldn’t even sit up in her chair when I got her back out into the living room.  I just took her into the bedroom and got her into bed.  She slept for three or four hours.

After she got up, I fed her lunch and the bathroom trips began in earnest.  There was more production during the afternoon.  Once down there would be a some activity.  Then I would pull her up, hold her up and do clean up, almost always including (sorry) getting out some that would not come on its own.  Then as that was going on, she would faint again.  Trying to get her into the sitting position when she is only partially conscious and holding herself stiff, takes all the strength I can muster.  The torso has some pretty powerful muscles.

Each time we went in, there would two or three repeats of that same pattern with occasionally a few minutes of just sitting there holding herself up. During those times, I stayed close to her so that I could get there immediately when she popped up.

Most of the next couple of hours contained those trips, each about the same in terms of my role.  When Mary Ann was not in the bathroom, she was in pop up mode.  She has absolutely no awareness of the risks of getting up no matter how often she faints or how much I remind her not to get up without my helping.  At one point, I had to click the seat belt on her transfer chair to slow her popping up so that I could finish folding the clothes from the dryer.

What I have described above is a very normal activity for Caregivers of those with Lewy Body Dementia.  I can hardly complain.  Others have a far more difficult time than do I.  I write in such detail first of all for selfish reasons.  It helps me to put into words and sort of “get off my chest” just how difficult a day can be.  I hope that the detail also provides a point of contact for those who are experiencing the very same thing but have no one to talk with about it.

I also hope that those of you who have friends or family or acquaintances who are caring for someone, will realize what they are going through and cut them a little slack.  If they are whining, they are doing so for good reason.  You don’t have to try to fix their situation, just listen patiently without immediately changing the subject to something that is going on in your life or tell them about all the other people who have it worse than they do.

Tonight, I am wondering if there is a direct correlation between the low blood pressure fainting issue and Mary Ann’s ability to keep on track mentally.  Shortly before going to bed, she stood up and called me over.  I asked what she was doing.  She seemed distressed and said she was leaning against a wall.  Her eyes were open, not slammed shut as happens sometimes.  She was in the middle of the living room, in front of the television.  When I said there was no wall, she responded, “Did they take it down?” (Probably a memory of the removal of walls in during the sun room construction.)

Moments later in the bedroom, she asked what day it was.  I answered, “Saturday.”  Then she asked me if I was preaching tomorrow.  I asked her when the last time I preached was.  She said, “Last Sunday.”  I asked her if she remembered that I had retired almost two years ago and had not preached since.  She just looked puzzled.

While she does get confused and have delusions and hallucinations and dreams that she cannot tell from reality, those interactions tonight, seemed a little extra odd.  That raised in my mind the question of the impact of so many times today that her blood pressure was too low to keep an adequate supply of blood flowing to her brain.  I am wondering what sort of cumulative effect that has.  If that is the case, it complicates the current decision not to give Mary Ann the Midodrine that raises her BP to harmful level.  There is nothing easy about dealing with this combination of diseases and debilities.

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

 

March 27, 2010

Reduplicative Paramnesia

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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Last night Mary Ann told me that they were trying to trick her.  They were trying to convince her that she was not in her bedroom.  That is a Delusional Misidentification Syndrome called Reduplicative Paramnesia.  It is the belief that a familiar object is actually a substitute for the real one.

Those whom Mary Ann calls the Thursday people were back.  I think it was they who were trying to convince her it was not her bedroom even though it looked just like it.  At least one other time during the night, she asked if the people had settled down yet. As I have mentioned before, I do not want to reinforce the delusions and hallucinations, but I don’t want to dismiss them since they are real to her.  I try to explain that they are not real in a way that I can see them or do anything about them.  Gratefully, she is not terrified by them.  Hospice Nurse Emily confirmed that today when she asked Mary Ann about the hallucinations.

The problems related to what information her visual cortex sends to her awareness are one of the signature symptoms of Lewy Body Dementia and the Dementia that comes to some Parkinson’s Patients.  It is the problem with delusions and hallucinations that often force the issue of using residential care.  As challenging as they can be, with the help of Hospice, I am determined to avoid any residential care other than perhaps a respite day some time. So far the hallucinations are not so strong and so constant as to be impossible to handle.

Today, again, there were multiple events of syncope (fainting) associated with trips to the bathroom.  I suspect that I held her up on the stool upwards of a half hour adding together ten or fifteen minute segments.  When Hospice Nurse Emily took Mary Ann’s blood pressure this afternoon it was 118/68.  That would be good for a twenty year old.  When it starts out that low, it can, of course, go much lower when she stands up.  I have been trying to manage the fainting without resorting to the Midodrine that raises it.  The high BP is so harmful to her heart and kidneys especially.  If it remains that low, I may need to reconsider restarting the Midodrine.  The Cardiologist has given me the freedom to decide whether to give her the Midodrine based on our quality of life.  The preference is to avoid using it.  Those sorts of decisions place a lot of responsibility on my shoulders.  Yes, I am the one with the best vantage point for making the decision, but I feel the weight of that responsibility.

Gratefully the fainting spells were over just before Hospice Aide Sonya arrived at 11am to wash her hair, give her a shower and get her dressed.  Sonya said that Mary Ann did fine. After the shower, we headed out to do errands and to pick up lunch for Mary Ann.  It was a favorite of hers, steak soup and lemon meringue pie from the Copper Oven.

Again after Nurse Emily left in the mid-afternoon, we headed out for errands.  During that run, I picked up some flowers for Mary Ann.  Daughter-in-Law Becky had won a commitment from me to get Mary Ann flowers regularly in trade for adding our cell phone to their account. Do you see why we think so much of our children and the ones with whom they have chosen to spend their lives?

Of course that trip had to include a stop at Baskin & Robbin’s.  Those of you who have been paying attention will probably want to remind me that late afternoon ice cream treats ruin supper and make for tough nights including lots of snacks.  I know!  But the ice cream tastes so good.  She went to bed not too long after 6pm, and yes she has already gotten up to eat a sandwich and some applesauce.  That was around 9pm.  I hope that is enough to get her through the night.

Even with all the ice cream, I reported to Nurse Emily that Mary Ann weighed in at 113 pounds yesterday.  That is down from the last time, 114.5, but up from the time before that, 112.5.  That is about 10% less than she weighed not too many months ago.  At least she seems to be holding her own at the moment.

There is one way in which her weight is an advantage.  Most of those who post in the online Caregiver Spouses of those with Lewy Body Dementia are women caring for their husbands.  A number of them in the last couple of days have talked about the predicament of having their almost 200 pound husbands fall, leaving them unable to get their husbands back up.  Most of them have had to call 911 to get their husbands back up.

I am grateful that Mary Ann is light enough for me to handle most of the time.  Reading those posts, I appreciate how easy I have it by comparison.  I feel a little wimpy when I have trouble getting her off the floor.  It all has to do with where she is located when it happens, whether I can get her in a position that allows me to pull her up and whether or not she is alert enough to help in the process.  When she is partially asleep or feeling very weak, picking her up from the floor with no assistance from her is almost impossible for me to do without risking damage to myself, thereby rendering our system unworkable.  We do have a Hoyer Lift to use if she is located in a position that allows me to get the sling under her.

It is getting late, and since i have had to get up fairly early each day to prepare for the workers on the remodel project, I am anxious to sleep in a little while tomorrow morning.  That will be up to Mary Ann.

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


 

March 20, 2010

Face Death — Find Life

Posted by PeterT under Daily Challenges, Hospice, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , |
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Now that Mary Ann is enrolled in a Hospice program, there is certainly a vivid awareness of death.  What exactly does that mean about what it is to be alive?  Is Mary Ann as alive as she was before she was enrolled in Hospice?  I will soon be 67 years old.  Statistically, I am closer to death than when I was 27.  Am I less alive now than I was then?

Marilyn, a Lead Staff member at the church I served as Senior Pastor for a dozen or so years has asked me to consider doing a presentation some time on funeral preparation and things that are associated with the process of dealing with a death in the days after it happens.

After forty years in the ministry, I have been through death with numbers of people.  In my job, I simply could not avoid thinking about and talking about death.  I remember when working on my doctorate, for a class on ministering to the older population (of which I am now a proud member), interviewing my Mother, who was in her seventies at the time (sounds young to me now).  I asked what she thought about death.  She said it is just a part of life.  It had been for her, having lost her first two children, one as an infant and the next as at the age of five.  People lay in state at home in the early years (she was born in 1907).

On occasion, when I had a cluster of funerals very close to one another (happened surprisingly often), I would wonder if I ought to find something to do that did not involve being immersed regularly in peoples’ lives at a time of such loss. I am convinced that the truth of the matter is unless and until we come to terms with death, with ours and others’ mortality, we can’t really live life to the full.

Fear of death seems to me to steal the joy from life.  Fear of dying is another thing entirely.  That fear is pretty rational.  None of us longs to have a long protracted process of dying.  Death is just the period at the end of the sentence that is the story of a person’s life.  Every day we are writing that story.  Accepting the reality of death frees us to give our full attention to the story we are writing each day, from the time we wake up to the time we go to sleep.

Making plans for the time when we die is just a normal task each of us needs to do, assuming we care at all about those who will be left behind. There is a peace and freedom that comes when all that is in order.  Today, Hospice Nurse Emily mentioned that her very healthy 87 year old Grandpa asked the Grandkids to go around his place and put their names on things for the time when he was gone.  At first the kids were reluctant, but he insisted.  For him it was comforting to know where his things would go.

The process of funeral preparation can be very life affirming.  While I do not recommend writing your own obituary with the expectation that it is the one that will be published, the exercise itself can be life changing.  Who do you want to have been when the period at the end of the sentence comes?  How do you want the story of your life to read?  Once you have gone through that exercise, it is time to actually do something to make that story a reality.

Mary Ann and I are no more or less alive than we were a month ago, a year ago, a decade ago, a half century ago.  Hospice or not, we are both alive.  There are limits on what we can do now as we continue to write the story of our lives, but there are limits of one sort or another on everyone.  The limits are not so confining as they are simply the setting for the story.  We write the story of our lives using the resources we have, not resources we used to have or wish we had, but the resources we have, thereby avoiding wasting time lamenting that we don’t have.

Mary Ann had a reasonably good day today.  It started with some fainting, but we got through that.  There was more conversation about dreams that seemed real to her.  Later in the morning Hospice Aide Sonya came to do Mary Ann’s shower, etc.  After a pretty full lunch, Nurse Emily came.  Again, it is good to have someone to report to and lean on when trying to determine how Mary Ann is doing medically.   I am happy to report that Mary Ann has gained back a couple of pounds, now at 114.5.

Former parishioners came by for a visit.  Randy and his Mom Leota came by for a while.  She is also suffering from some form of dementia, so her memory is not good.  Her husband was an avid fisherman, whose catch she would sometimes cook for us and call us to come and pick it up.  I did the funerals for one of their adult children, and her husband, as well as a couple of his fishing buddies.

Mary Ann ate a decent amount for supper and is now trying to settle down for the night.  The snow is falling at a rapid rate.  The first day of Spring tomorrow may include as  much as a foot of snow.

Since I seem unable to keep my eyes open, I think I will bring this to a close and head to be.  Here is hoping for a sleep-filled night.

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

 

March 18, 2010

Let There Be Light!

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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“…and there was light.”  This afternoon twelve feet of light flooded into our little townhome.  It seems as if not only have we added a six foot by nine foot area to our living space, but a deck, waterfall, and back yard filled with trees.  By contrast to the closed in feel of the interior living space in our little townhome, it now feels expansive and open. 

Sometimes it surprises me just how powerful the living, growing outdoors filled with birds and little beasts and thriving greenery can be for me.  I do not share the theology of Avatar, but I share the awe and wonder and respect for the healing influence of the creation. 

On this project, we are using the Design/Build approach.  I think that means something like flying by the seat of our pants as each question/option/decision comes up.  Gratefully, the contractor and carpenters have had very many years of experience doing this sort of project. 

“Would you like the ceiliing raised?  How about a ceiling fan?  If so, what size, color, style of lights?  Is the wall paper staying or going?  How many and where should the outlets go?  Do you want a railing on the short section by the stairs on the south side, a railing on the east side, a railing on the west side, anything on the north side?  How high should the posts be on the east side and what sort of blind will you get for it?  How wide should the steps be?  How wide and thick should the interior support post be?  Where should the switches for the ceiling fan, its light, and the outdoor spots go?  What should be used to transition from cork floor to carpet?  Do you want the sliding glass door to open in the middle or on the side, what side?  What about blinds for all that glass? Verticle? What style? Color? Fabric? Vinyl?

So far it looks even better than I had hoped.  Mary Ann has been skeptical about the project, but when the walls came down today, she seemed to like it very much. 

The noise has been deafening.  We had hung out in the kitchen at the little ice cream table most of the time.  When Mary Ann has been napping in the bedroom, she has seemed completely oblivious to the machine-gun rattle of the drills and pneumatic tools.  At some level, the sounds of construction are music to my ears as the project takes shape.

The last two days have gone pretty well for Mary Ann.  She attended he Tuesday morning group and was fairly alert there.  We ate out at Perkins so that she could have pancakes.  She let me feed them to her.  She consumed about 80% of three buttermilk pancakes and all of two pieces of bacon.  She had eaten a good breakfast and had a couple of cookies at her Bible study.   She ate a small but adequate supper, with a couple of scoops of ice cream to finish it off. 

The Hospice Nurse came by for a while to check in and ask her routine questions about how MA is doing.  She is, of course, interested especially in any changes.  Mary Ann’s blood pressure was high again, 208/100.  It is reassuring just to have someone who listens and writes down what is going on.  It takes a little of the pressure off that sense that I have to be on top of everything and catch problems on my own.  It has seemed a little overwhelming sometimes to feel as if I need to be able to figure out what is going on with Mary Ann and when what is going on warrants an intervention of some sort. 

Stacey came by to show us some more options for verticle blinds to provide privacy with all that glass opening into our living space.  She also brought some more paint samples since Mary Ann had mentioned some ideas for colors to use in repainting the main upstairs interior walls.  I was pretty excited that we came up with what we want to use, and Mary Ann had significant input. 

Last evening Volunteer Patrice spent time with Mary Ann, while I served as an interview Guinea Pig for a Doctoral Student, Gretchen, Daughter of Don and Edie, whom I have mentioned in earlier posts.  That interview was done at PT’s, so I got some time away from the house, and Mary Ann got a break from me.  It is always good to have something different and disengage from the role at home for a while. 

Last night she slept well.  I was grateful, since the time change conbined with late nights writing posts caught up with me, and I headed to bed without writing last night. 

Today has gone very well.  Mary Ann sat in view of the monitor this morning without getting up, so that I could remain with the Spiritual Formation Group downstairs most of the time.

Bath Aide Zandra has struggled with fainting issues interfering with a safe shower experience.  Last Monday, Mary Ann had not yet taken her meds by the time Zandra arrived.  She had no problems with her and enjoyed that she was able to converse with Mary Ann.  For the last couple of weeks, Mary Ann has been very tired and unresponsive as well as fainting often while showering and dressing. 

This morning, I purposely waited and did not give her the morning meds before Zandra came.  Again, she did very well.  Mary Ann did not faint and was conversant with Zandra.  I have been convinced that most often the fainting has come when the morning meds started kicking in.  Many of the meds have the side effect of lowering blood pressure.  This week’s experience seems to confirm that the meds are a triggering element.  I am going to try to remember to hold off on meds until after her shower on those days.  She still has Orthostatic Hypotension, but maybe we can at least minimize the risk of it acting up during her shower. 

Friend and Volunteer Coordinator Mary came by this afternoon to spend time with Mary Ann while I ran some errands related to the remodel project.  She broght some flowers, always very much appreciated by both Mary Ann and me.  Flowers brighten our sometimes stale environment. 

Mary Ann ate a fairly light supper, and then a bit ago she got up from bed to eat a half sandwich.  I hope a full stomach will help her sleep well.  There are, of coruse no guarantees about that.  We have some company from Kansas City tomorrow, a visit we are both very much looking forward to.  We have been friends with the crew that is coming for more than 35 years.

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

 

March 16, 2010

Missing Skill Sets

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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She liked it!  She actually liked it.  Those of you who have been reading this blog for a while know that I struggle to provide tasty meals for Mary Ann.  I will eat almost anything (except Okra, Oklahoma friends may remember).  Mary Ann, however has a discriminating palate.  That is a classy way of saying she is an annoyingly picky eater! She has been a phenomenal cook when she still used the kitchen.

I can hardly claim the high road here.  I am a hopelessly unskilled and lazy cook.  Give me a four gallon pot and a refrigerator of odds and ends, a few cans of beans and tomatoes and I can make a pot of soup that is nourishing and filling, if not tasty.  I am pretty much the only person who will eat the soup that I make.

People keep telling me that all I need to do is follow a recipe.  They forget to mention that there need to be ingredients purchased, seasonings on hand and enough experience to understand what the heck the recipes mean.  They tend to leave out instructions for things “everybody” knows how to do.  Then there is the issue of getting things for the meal all done at the same time, so there aren’t cold mashed potatoes with a hot roast.

Anyway, she liked it.  She had wanted a pork roast.  She usually doesn’t suggest meals, especially now that words are very few.  She picked out the roast. at the store.  Of course the choices did nto include a pork roast like the ones we used to have, the ones with the bone, lots of fat, and the tenderloin still attached.

I browned the roast in a pan with some olive oil.  Then put it in a large rectangular glass baking dish.  I surrounded it with large hunks of cut onions, red potatoes cut in half, and a half cabbage cut into quarters.  I put salt on all of it since so many veggies would need it.  I sprinkled a little garlic powder on all of it.  I covered the roast with dried thyme.  I deglazed the browning pan with some beef broth.  (Are you impressed yet – “deglazed” — am I cool or what?)  Then I poured that over everyihing, added a little more olive oil on top of the veggies and cooked the heck out of in the oven for a couple of hours.

It was good!!!  She liked it. I liked it.

We also had a windfall.  Don and Edie brought over a meal from the Baptism dinner.  Today, Shari who stayed with Mary Ann this evening brought over tonight’s supper.

Gratefully, our Daughter, Lisa, has made a number of items for the freezer that I only have to thaw and heat.  What a blessing.  She did that while she was here with Mary Ann when I headed to Oklahoma for the three day retreat.

There are lots of people who find themselves in the position of lacking certain skill sets to fulfill all the needs that emerge because of the circumstances that they are in.  When a household has a couple of adults and some children in it, the tasks get either divided or shared, depending on the skills each adult has.  Even in households with two or more adults, there still may not be some skills needed to sustain the household.  In that case, the people in the household earn money to pay someone who does have the skill set that is missing.  Plumbers and electricians come to mind as those who might be paid (now or later, if an unskilled household member tries to fix whatever it is).

People whose life circumstances change may find themselves lacking needed skill sets.  It happens when there has been a divorce.  It happens when a spouse dies.  It happens when  a key member of the household becoms disabled.  It comes with the territory for anyone who happens to be the only one living in the household.

There is inside maintenance, outside maintenance, accounting and money management, automobile maintenance (what and when and whom do you trust).  I am sure you could add lots to that list.  For Caregivers, the task is often complicated by the sheer wieght of dealing with all the personal needs of someone else as well as his/her own.

I have to admt that in my case, many of the missing skill sets are not ones that couldn’t be gained with a little effort.  Therein lies the rub.  Effort is in short supply.  Yes, a lot of it is just laziness.  I have not always been adventurous in learning how to do new things.  I am a procrastinator, and as a reault, I often just don’t get the learning process started on a new skill in time to do what needs to be done.

The skills that are necessary to full time caregiving include food preparation (unfortunately — especially for Mary Ann), managing a household, managing finances, good decison-making (lots to be made on your own), medical diagnosis, communicating effectively with medical professionals (both listening and talking), basic CNA skills in assisting in toileting, showering, dressing, feeding, washing hair, basic household duties such as washing clothes, making beds, cleaing the bedside commode, cleaning up after meals.  Those of you who are Caregivers can, I am sure, add at least as many more tasks that come with the territory.

So, as do each of us who have total responsibility for keeping a household functioning, I do what I can do, find others to do the things that I am currently not equipped to do well, and ignore the rest.  Just don’t look to carefully if you come to visit.

Actually, I have decided only to have very low maintenance pets in the house to keep us company.  At the moment, we have only Dust Bunnies as pets.

Today went reasonably well for Mary Ann, but there was a lot of sleeping, in spite of very loud sawing and banging on the outside walls soon to be removed.  I hope she sleeps 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.

 

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