April 23, 2010

Refreshingly Normal Day

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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It seems odd that a simple day of getting up, doing stuff and going to bed could be so great.  We both had an appropriate number of hours of sleep.  We got up and a reasonable hour.  Mary Ann seemed to be connected to the realities of the day.

Not too long after breakfast, Hospice Aide Sonya came to do Mary Ann’s shower and hair.  It was almost comical to hear Sonya describe it.  Mary Ann had a couple of monumental deposits to make during Sonya’s time with her.  Sonya described in great detail the nature of the deposits.  Her description reminded me of the latest round of Subway commercials.  I will leave the rest to your imagination.  I was grateful on a couple of counts.  One, Sonya got to share the joy of waste management duty, sparing me the task.  Two, it was a much needed basic bodily function that will help Mary Ann function better and feel better.

After that, we watched television together for a while.  I made trips to the computer to read emails.  I also got started on a couple of loads of wash.  Mary Ann ate a pretty substantial lunch, then we headed out in the car.  The local Asparagus is coming on, so we headed to Meier’s market to pick up a few pounds.  I practically live on it when the locally grown crop is available.

After that we headed to Flowers by Bill.  Daughter-in-law Becky made a deal with me, trading the benefit of my cell phone on their account for me getting Mary Ann fresh flowers periodically.  This is the second time I have done it, and both times I have been surprised at the spectacular bouquets I have received.  I have gone in each time and told them what I am doing.  I have asked for whatever they can give me for ten dollars.  Each time they have come out with an arm load of beautiful flowers.  This time there are daisy mums of many different colors (20 open blossoms), carnations (9 open blossoms), alstermaria or peruvian lilies (3 stems each with multiple blossoms on each stem), and a huge yellow rose.  The bouquet has filled the living room with color.

We made an obligatory stop at Dairy Queen, since it is still buy one Blizzard and get the second one for 25 cents week.  I guess today could be designated Flower Day.  Shortly after we got back home, Volunteer Maureen drove up.  She delivered birthday presents for Mary Ann and me.  One is a vining geranium in a hanging basket, providing color just outside our kitchen window (where I now spend an inordinate amount of time each day).  The other is a Gerber Daisy sporting lots of large yellow blossoms.  Maureen remembered that yellow flowers are a favorite of Mary Ann.  That now sits on the deck just outside a glass panel in full view of Mary Ann from her chair.

At supper time I actually made a sort of normal meal – a rarity.  I browned cut up ring sausage in olive oil with lots of onions.  Then a ton of the fresh Asparagus went into a pan to be steamed.  At the market there were some small white potatoes that the owner had kept back for the family last fall.  They had some left and offered them for sale.  I steamed them with salt, dried onions and parsley, drained the water off and covered them with butter (margarine).  I was surprised at how much of the garden flavor they had retained.  Mary Ann apparently approved since she cleaned her plate of every speck of food I put there.  That almost never happens.

After finishing the couple of loads of wash and cleaning the pots and pans from supper, I decided that if there is some sort of certification as a domestic engineer to be had, I am now qualified.

I plan to spend a little time tonight with a newly obtained book on St. Patrick’s Breastplate.  Each chapter is a reflection on one of the phrases in the prayer.  YouTube will provide sung versions of the prayer to give it fuller expression.

I will accept today as the gift of a kind of normal day that most would find boring, to be taken for granted.  To me it is a refreshing encounter with something to be cherished, never to be taken for granted but instead savored.

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 22, 2010

Slept for Many Hours

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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Mary Ann went to bed at about 9pm last night.  Once she settled, she did not get up until 12:15pm today.  That is fifteen hours straight.  When I went to the bedside commode to clean it today, it had not been used at all.  She was not up even once.

I said in last night’s post that I hoped to get to bed earlier than usual.  I was in bed by 10:30pm (usual time is 12-1am.  I slept in until 8:30am and got my shower done quickly in case Mary Ann needed me.  After getting showered and dressed, since she was still sleeping and there was a quiet rain with soft rumblings of thunder in the distance, I lay back down on the bed.  I also did not get up again until 12:15pm. And people ask what it is like to be retired!!

The rest was very much needed for both of us.  Mary Ann was not so confused today, nor was she in that intense popping up mode that is so difficult for me to deal with.  The symptoms that suggested to me that I might be coming down with something seem to have subsided also.

Mary Ann ate well, only two meals due to getting up so late in the day, but substantial meals — with a large bowl of Ambrosia Salad as a snack in between the meals.  There was some much needed intestinal activity, demanding my participation.  There was some fainting that made that job more difficult, as usual.  She was able to sit up in her chair most of the time when she was in the living room.

Volunteer Deb came over to spend the evening with Mary Ann while I attended a choir rehearsal at the church from which I retired.  I was asked to sing one of the parts in a trio that is part of a larger piece to be sung by a combination of area choirs at a concert concluding a number of months of music activities.  This is the first commitment I have made in a year and a half, other than doctor appointments and that sort of thing.  Mary Ann’s needs at the last minute resulted in my being unable to honor a somewhat similar commitment a year and a half ago. At that time, I concluded that I simply could not commit to anything outside of Mary Ann’s care.

This time I have put in place coverage for Mary Ann that should assure my ability to honor the commitment.  Since my little part in the piece impacts the rest of the choir I can’t in good conscience just bail out at the last minute.  There is a paid Companion Care Aide from a Home Health Care Agency (Home Instead) who is scheduled to be with Mary Ann during the time of the concert itself.  Aide Debbie knows Mary Ann very well from having come each Sunday Morning to be with her for a year or two before I retired.

It was good to be singing again.  I struggled with my own ability to read music tonight as I sat with the choir, trying to sing along.  Singing in choirs and ensembles was the center of my school years.  I got to serve as student conductor of five choirs spread over high school and college years.   After that I sang in two Seminary choirs during those four years of graduate level schooling.  I sang in Schola Cantorum, a semi-professional choir sponsored by the American Guild of Organists for a number of years in Kansas City.  It is hard to accept struggling to read what would have come quickly in earlier years.  When I complained about that to the barista at the coffee shop on my way home tonight, I noted that the last time I had sung regularly was in 1987, when we left Kansas City.  The barista is of college age.  She immediately put into perspective the reason I might be a little rusty.  She was born in 1986.  How on earth did I get so old so fast!

As I was anticipating retirement and full time care of Mary Ann, I had visions of all sorts of things that I might do without 60 hours of commitments to my job as Senior Pastor of a large church filling my week.  I knew from the days and parts of days I was by myself with Mary Ann that it would be very hard to do other things.  The fall after I retired, reality set in.  Because of the vacillations that come with Parkinson’s, along with the addition of the Parkinson’s Disease Dementia, making those vacillations even more dramatic, it soon became clear that I could not commit to anything other than her care.

There are a number of folks in the online group of those in situations similar to mine, who are able to keep a few other activities in their lives on a regular basis.  I made a choice to just do the one thing.  I did it realizing that for me, the stress created by trying to manage regular commitments in addition to Mary Ann’s care was more than I could handle.  I still have no idea how, even with all the Volunteers, I survived the last seven or eight years before I retired.  I doubt that without our Daughter and her family’s move here to help out the last couple of those years I would have made it.  I continue to be grateful for the Staff with which I worked, who seemed to be willing to do anything to help, and a congregation with very understanding leadership, willing to do the same.  It is beyond comprehension that so many in the congregation were willing to give so much of their time and energy to help us in our day to day survival, some still doing so.

As I have said many times before in these posts and elsewhere, while I would not wish this horrible disease on Mary Ann or anyone else, I am in awe of what compassion in action has surrounded us on account of it.  I can only hope that those expressing that compassion have found some meaning and fulfillment in doing so.  We cannot repay what has been given so freely.  We can say thank you.  It is all I know to do.

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 21, 2010

Tired, Frustrated and Very Grateful

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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It started again last night.  This morning she was up at about 6am and hopelessly confused.  It was 4pm pill time (there never has been such a thing); she needed to make hamburger BBQ; those were the most lucid of the first words this morning.

I got her back in bed so that I could take a shower and get dressed to prepare for the 7:30am Spiritual Formation group that meets at our house.  As soon as I got in the shower, she started yelling for me.  I got out to see what had happened, and she just wanted to know where I was.  The shower is in the bathroom right next to her bed.

Moments later, she needed to go to the bathroom.  She had been to the bathroom just before I went in to take a shower.  It was tough just to get the preparations in for the Wednesday morning group, since she was in her streaming delusion/dream/hallucination mode.

I have been especially tired the last few days.  Today, I have not felt good at all.  Here is where the grateful dimension kicks in.  Volunteer Maureen arrived at 7:25am to spend a couple of hours with Mary Ann.  as always, she had a meal for the freezer, a couple dozen homemade cookies, Blueberry muffins and three very tasty Macaroons.

Maureen gave Mary Ann her yogurt and a muffin and kept her occupied while I spent a couple of very spiritually therapeutic couple of hours in the Spiritual Formation group on the back deck.

Bath Aide Zandra came and took Mary Ann through her morning prep for the day.  Parish Nurse Margaret arrived just as Maureen was due to leave.  Margaret spent the next two hours with Mary Ann while I did some morning chores.  During that time I gave Mary Ann her pills.  Margaret checked Mary Ann’s blood pressure (122/80) and her pulse (60).  I was reassured by the normal pulse after yesterday’s unusually rapid heart beat.   The BP would be great for anyone else, but low for her.  She had already done some fainting this morning.

Mary Ann settled into putting her head down on the table in front of her as she sat in her spot in front of the television.  During this same time, Kristie, who does the monthly cleaning, came and started her work.  Part of my chores on this day is to do the pre-Kristie cleaning up so that she can get to all the places that need cleaning.

I headed off for a short time to squeeze in a couple of errands.  At 11:30am Volunteer Doris arrived.  I got Mary Ann’s lunch.  She could hardly keep her head up.  Her nose was almost touching the plate.  She finally let me help get the food to her mouth.  She did not want to go in and lie down, so I moved her to her spot where she resumed resting with her head down.  I remained at the house, since Doris needs help moving Mary Ann.  After a while I was able to get Mary Ann to lie down in bed for a nap.  I set up the monitor so that Doris could let me know if help was needed.  That allowed me to read emails for a while, do a couple of household tasks and sit for a few moments on the deck.

Then Tom from our pest control service arrived to do his quarterly task.  While he was  here Volunteer Scheduler Mary came to spend two and a half hours with Mary Ann.  She brought Lasagna and bread for supper, along with shortcake, strawberries and ice cream.  There was also a large container of Mary Ann’s favorite, Ambrosia Salad.  During the time Mary was here, we spent some time talking about her ministry as a trained (two years) Lay Assistant at the congregation from which I retired.  I spent some time on the deck and then headed out to sit at Cedarcrest and try to nap while sitting in the van.

After I returned and Mary left, Mary Ann was still sleeping.  Neighbor, good friend and former Parishioner Ann stopped by to see the new sun room and waterfall as well as visit for a bit. After Ann left, I decided to try to nap a bit myself.  That lasted only a few minutes before Mary Ann finally stirred.

It was another very busy Wednesday.  I am profoundly grateful for so many Volunteers spending time with Mary Ann today.  Any times I interacted with her, she was still in the streaming hallucination/delusion/dream mode.  It helped to have others here.  Since she slept so much, it would have been doable, but it was a comfort not to be alone in the task.  I had a chance to enjoy talking with those who came, making my day better.  I need and love times of solitude, but I need human interaction just as much.  The Mallards came by for a while today also, filling my need for entertaining wildlife.

We had the wonderful lasagna meal and dessert.  I spent time just sitting with Mary Ann as she watched an hour or two of television.  Then she decided to go to bed.  After a day of sleeping, I am not sure it will be a very restful night, but I certainly need one.  I absolutely cannot allow whatever it is that is making me feel bad physically develop into anything that interferes with the functioning of our system.  The only power I have is to try to get some rest.  Otherwise, I am fully aware that I have very little to say about what does or does not develop.

I am trying to finish this earlier than usual tonight, so that I can allow more time for rest.  How much rest I actually get will depend on how Mary Ann’s 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.

 

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 19, 2010

Wasted and Worn Out.

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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One night and day like this are about all I am up to.  Last night the hallucinations fired up.  When I say that we got less than half a night’s sleep, I mean that if the night were to be sliced down the middle, lengthwise, there was sleep that totaled less than half the available time.  In other words, there was about twenty minutes out of every hour that may have included some sleep, at least for me.  As I write that, I suspect that I am exaggerating some.  I doubt there there was twenty minutes in any hour that was not spent trying to explain away hallucinations and convince her to lie down and go to sleep.

Once after I had pointed to her quilt on the wall and the family pictures on two other walls in the bedroom.  She stared me in the face and said in a very belligerent tone: “All right, now just take me home!”   At one point she was crying uncontrollably during a dream.  Almost immediately after I hit the publish button on last night’s post, she got up and then fell down in the corner of the bedroom. When I got there she was talking utter gibberish in a loud voice like the sounds she makes sometimes when she is starting to faint.  They are awful sounds.  They may have been some sort of wailing that was part of a dream that was going on when she fell.  I was afraid she had had a stroke, but when I got her up, she seemed to have awakened from whatever form of dream she was having.  She was still not at all lucid.

After having clear and healthy looking urine all day, up until the time she went to bed, she started showing some blood in her urine. I phoned Hospice, grateful to have someone to call.  The Hospice Nurse said she would bring over a kit to gather urine so that she could be tested for a urinary tract infection [UTI].  We agreed that it would be okay to wait until morning to bring it over.

After an entire night of getting up and down again and again, trying to get her to settle, she got up very early.  I had set the alarm early so that I could get a shower in before the nurse came.  Mary Ann was up before the alarm went off.  She was in hallucination streaming mode.  I simply cannot endure that for very long.  She hops up immediately after sitting down, needing to go somewhere, not always sure where.  She was in fainting mode, so each time she insisted on getting up and walking somewhere, she ended up on the floor.  I was with her each time, so I had to let her down to the floor, sometimes dead weight, so that she would not hurt herself.  Then I got the transfer chair beside her, pulled her up on to her feet and back into the chair.  As soon as I moved her back to her spot, she would pop up and the procedure would start again.  I could not begin to count how many times that happened.

I did manage to get her fed, no small task since she was hallucinating and paying attention or talking to whatever or whomever she was seeing.  I am utterly helpless to do anything about problems created by people or objects that have no corporeal presence.  They just don’t exist outside of Mary Ann’s plaque laden brain cells.  Whether or not they are real, they are so to Mary Ann.  They elicit the full range of feeling and frustration and fear that they would if they actually were real.

I had to sit two or three feet away from her every minute, or she would get up and move someplace where she could be hurt.  I could not so much as get in a fifteen minute shower.  The Hospice Nurse had to be late, since a client had died and she had been up with them all night.  I followed Mary Ann around, picking her up again and again for two or three hours, until just minutes before Nurse Emily arrived when Mary Ann simply crashed and had to go back to bed.

Nurse Emily dropped off the urine gathering kit for me to use later, but she was also willing to stay for fifteen minutes extra so that I could take a shower.  During that time Volunteer Edie came to stay with Mary Ann.  As always Edie brought lunch. This time it was a favorite of both Mary Ann and me, a Greek style meatball and veggie soup.  Mary Ann slept about three hours, beginning before Nurse Emily and Volunteer Edie arrived and ending just after Edie left.

We ate lunch, and afterward, Mary Ann started the same pattern as the one that had almost driven me crazy (short drive) before her nap.  A number of times when she popped up in the afternoon, she was irritated that I didn’t get her into the car to go to the Evening Service at Church.  The service is at 6pm (ten minutes away from our house) and she started popping up around 2:30pm.

The afternoon pop-ups included four or five of them beginning a trek to the bathroom, where the fainting and intestinal production ending up in the wrong place happened a number of times.

We did manage to get to the Evening Service, but I was wasted and worn out, and Mary Ann was not able to participate much in the service. There is enough structure to the service, that we could at least make it through the service.  Church and supper did not change the pattern.  We ate supper, Mary Ann sticking her spoon in the Pepsi and her napkin in the soup, often seeming to try to eat the napkin with the spoon.  Sleepless nights wreak havoc on her dementia.

I won’t deny that I had been hoping all afternoon and evening that she would go to sleep again.  She did not.  Now finally she is in bed.  She has been continuing to pop up and down, sometimes thinking it is morning.  I have had to talk her out of getting up and dressed.  I don’t know that I have another night like the last one in me.  I guess I don’t have a choice.

What I have written may make no sense, I am so wasted that my eyes keep shutting.  I need to get to bed. (Too tired to edit. It goes out errors and all.)  [I am adding this sentence to indicate that I have now edited this post, and Mary Ann and I did get some sleep last 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.

 

April 17, 2010

Good Days Come to an End.

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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The short string of good days ended, beginning last night.  The remote control sitting two feet from her was a candy bar.  That and some other comments hinted at what was coming.  Last night she was up at least once an hour throughout the night.  She got up early this morning.

As I sat next to her in the living room she spoke with a very rational and clear voice asking about some things.  She asked if the blond young man who had come by was Daughter Lisa’s boy friend.  There was no blond young man, and Lisa, husband Denis and the girls in Kentucky are absolutely secure.  No amount of talking by me or Lisa has managed to remove that from her repertoire of hallucination/dreams/delusions.

She wanted to be sure to get the Tom Mix Western back to the library.  We haven’t been to the library and certainly have never taken out a Tom Mix book.  He was a western hero in the movies from before Mary Ann and I were born.

She wanted to make a list of things to send to the kids, all she could think of was a blue tennis shoe for a baby she concluded they had left here.  She looked outside that decided that there had been an avalanch.  I asked if she was referring to the waterfall.  She said it was under the waterfall.  She was struck by the orange-green tree in bloom in the back yard.  We do have a Tulip Poplar that has orange and green blossoms early in the summer.  There were barely any leaves on the tree yet.  Where she was looking when she said that was not where that tree is located.

She decided that the eyelets on my hiking boots (which I wear every day now that I am retired) were jingle bells.  She tried to make them jingle but they would not work.  She told me in that matter of fact voice that her oldest Brother’s widow had changed her last name, having married someone whose name was new to me.  I am confirming that such a thing has not happened.

We talked for a while about the fact that I knew the things she had said not to be true outside of her thinking and dreaming.  She said there was no reason that I would lie to her about it, espeicially about our Daughter.  She said she just felt that people were keeping things from her.  I explained that all the folks I read about online shared that their spouses suffering from the disease that she had talked the same way about things.

I recognize that telling her it is the disease is not going to convince her that the dreams/hallucinations/delusions are not real.  I just want to be consistently telling her the truth as I understand it since sometimes she is lucid and seems to understand that they are not real.

She was not up for long this morning before wanting to lie down.  She slept for over five hours.  I knew that I should insist on her getting up periodically to go to the bathroom, but she seemed unable, certainly unwilling to get up at the two hour intervals at which I gave her a pill.  There was bedding to be washed and pj bottoms to be washed.

She finally got up to eat a late lunch around 4pm.  We were invited to head to Neighbors Carol and Eddie’s house for ice cream and goodies.  I thought we could try.  Mary Ann wanted to do it.  She was having trouble with hallucinations as well as trouble sitting up without fainting.  I asked her again, and she insisted that she was all right. I called to say we would be coming over in about an hour.

Immediately after doing so, she moved to her spot in front of the television and her head went down on the little table with the pillow.  After a bit the deadly combination of fainting and intestinal activity began.  I was able to get to the phone to cancel just before it began in earnest.  Gratefully, it did not last as long as it had that last and most difficult Saturday evening.  As always, it was very demanding physically.  It has to be hard on her, but she remembers very little of it.

She is in bed, but seems to be in the sort of mode that is likely to result in lots of night time activity.  That remains to be seen.

I spent the time she was napping in deck therapy and more sunflower seedling removal.  I reread the article from Weavings that I read yesterday.  I also got the latest newsletter from a nearby Spiritual Formation retreat center called Shantivanam.  The newsletter has a short series of segments for meditation.  The birds were fairly active again.  By the way, the crazy Robin returned this morning to challenge his reflection in the lower window on the deck.  They had quite a battle.  I am not sure who won, but he finally left after a half hour or so.

A few minutes ago, Mary Ann needed a commode trip and asked if the people were settled down and in bed.  I just couldn’t bring myself to follow the general wisdom and just say yes.  I told her that while I could go along with the hallucinations, I wanted her to know that I would always tell her the truth whether she wanted to hear it or not.  I told her that there are no other people here.  It is just the two of us, and we are in this together.  Whether it is the best way to respond or not, it is the one I have chosen.

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 16, 2010

Male Caregivers

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , , |
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Recently in the online Lewy Body Dementia Spouse Caregivers group, a short discussion began about differences in the way husband Caregivers and wife Caregivers deal with their role.  I have copied an article from the AARP website on the matter.  While all of us have common challenges irrelevant of gender, there are some different cultural patterns that seem to come into play for males and females.  The task is equally difficult.  I have to say that I identify with much of what is written below.  At the end I will include an update on a fairly uneventful day at our place.

The New Face of Caregiving: Male Caregivers

By: Cathie Gandel | Source: AARP Bulletin Today | – January 23, 2009// <![CDATA[
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Photo by Blasius Erlinger/Getty ImagesPhoto by Blasius Erlinger/Getty Images

When his wife, Chris, was diagnosed with breast cancer on their 19th wedding anniversary, Dave Balch suddenly found himself with two full-time jobs: running his home-based software business and taking care of her. “I don’t know how I managed everything,” says the 60-year-old from Twin Peaks, Calif., whose wife continues to fight recurrences of the disease six years later. “But you do what you have to do.”

Each year, more Americans are finding themselves in a similar situation—and challenging preconceived ideas about men and caregiving.

“People think that male caregiving means that the guy calls home from the job and asks his wife how his mom is doing,” says Donna Wagner, professor of gerontology at Towson University in Towson, Md. “That’s not true at all.”

A 1997 survey conducted by AARP and the National Alliance for Caregiving, a research and advocacy coalition, found that 27 percent of caregivers were men. By the 2004 update, that figure was almost 40 percent, with more male caregivers (60 percent) working full time than women caregivers (41 percent). Among the reasons for the increase: smaller families, longer life spans, more women working outside the home and greater geographic separation of family members.

While male caretakers face many of the same challenges as their female counterparts—including depression, stress, exhaustion and reduced personal time—they approach their caretaking role differently, say some experts.

“Men approach caregiving as a form of work, a series of tasks that needs to be accomplished,” says Edward H. Thompson, coeditor of Men as Caregivers and director of gerontology studies at Holy Cross College in Worcester, Mass. “I don’t mean that to sound harsh. It’s just the way they look at things.”

Because they are used to delegating, they are more comfortable seeking outside help when they need it, says Richard Russell, associate professor of social work at the State University of New York’s College at Brockport.

Donald Vaughan, a 51-year-old freelance writer in Raleigh, N.C., has an aide come in three times a week to bathe and shave his father. “It’s worth every penny I pay,” he says.

But despite feeling isolated, men tend not to seek help for themselves, at least not from traditional support groups. Instead, some forge their own connections. In Rochester, N.Y., some fellow caregivers meet once a week for breakfast. “The men talk about sports, politics and grandchildren,” Russell says. “They don’t mention caregiving. It’s as if they have made a pact that this is their time to be just regular guys.”

Men also try not to bring their caregiving situation into the workplace. They not only have been socialized to keep things close to the vest, they also perceive a stigma associated with taking time off for caregiving responsibilities—and sometimes a lack of understanding from employers.

John Young experienced that feeling firsthand. The 55-year-old nursed his late wife through Lewy body dementia, a disease that combines the mental deterioration of Alzheimer’s disease with the physical disability of Parkinson’s disease. When his wife became ill, Young was teaching in a police academy in a Houston suburb. At first she was able to stay on her own while he worked, but one day she called with an emergency and he had to rush home. “When I returned, my boss called me in and asked, ‘How much longer does she have?’ ” Young says. “I knew it was time to go.”

Even those who work at home have trouble juggling responsibilities. “Taking care of my dad has had such a dramatic impact on my life,” Vaughan says. “One part of my brain is always on my father. And my time is nickel-and-dimed throughout the day. It’s hard to get a long period when I can do my work.” He interrupts his writing intermittently to make sure his father drinks enough fluids and walks up and down the hallway for exercise.

“The worst part is the exhaustion,” says Gary Noble, 64, who cares for his wife, who has multiple sclerosis. He also works as a bus driver in Livermore, Calif., and often has split shifts. He may come home at 8:30 p.m. Before he goes to bed at 9:30, he has to cook, clean up and tend to his wife’s needs. He needs to be up again at 3 a.m. “I’d appreciate just a few hours off sometimes,” he says.

John Carlson, 57, of Woodbury, Minn., takes care of his 88-year-old father, who is in the early stages of Parkinson’s. “The most difficult part is having time away from home,” he says. “Dad covets my time, as most of his days are spent alone.”

While any relationship may suffer in the caregiving equation, the issues are particularly difficult for those caring for a spouse, says Donna Wagner. Richard Anderson, president of the Well Spouse Association, a nonprofit organization that provides peer support to those caring for a partner with chronic illness or disability, agrees. He took care of his late wife, who had an autoimmune disease, for 29 of their 31 years of marriage.

“Spousal caregivers are different because of the intimacy of the relationship,” he says. “It’s hard to have sexual feelings toward your partner if you have to deal with incontinence and other personal issues.”

Despite the difficulties these men face, there is some good news. “My wife and I spend a lot more time together,” says Ray Heron, 57, of Charlottesville, Va., who has been caring for his wife, who has MS, for 10 years.

The caregiving relationship has brought Chris and Dave Balch closer, too. “This can really put your love for each other to the test,” Chris says. “In our case, it made it stronger.”

Tips for Male Caregivers
“There is no manual on this,” says Vaughan, the freelance writer in Raleigh, N.C., who cares for his father. “You learn day by day.” But here are seven tips passed on by men on the front lines of caregiving.
1. If someone asks what they can do to help, have a list in the back of your mind and tell that person.
2. Have something to look forward to—whether it’s a big trip or just a rental movie to watch at home. Remind yourself that you will get through this.
3. Acknowledge your emotions. You’re human, not a robot.
4. Set up a group e-mail to keep family and friends in the loop.
5. If you’re a spousal caregiver, don’t put off shared pleasures. If you and your wife always dreamed of going to the Caribbean and the trip is still feasible, do it now.
6. Remember that most of the little issues don’t count. Discuss them and find what works for both you and your patient.

7. Learn as much as you can about your patient’s disease, even though it might be scary.

As I mentioned earlier, today was a fairly uneventful day.  The night went reasonably well.  We both slept later than usual.  Hospice Aide Sonya came to get Mary Ann showered and dressed.  We ate here at the house, then headed out for a short ride in mid-afternoon.  Mary Ann napped when we got back.
I used the nap time for deck therapy.  Today I received the new issue of Weavings, a Spirituality Journal that I find very helpful.  That and the setting combined to provide a refreshing respite.  The respite time included some forays into the forest of sunflower seedlings in and around the waterfall – a consequence of spreading seed over the snow to keep the winter birds healthy and well fed. I pulled up mounds of them.
As I sat on the deck, the annual visit by a pair of Mallard ducks brought them through for a quick bath and a drink in the waterfall.    They and the rest of the birds seemed to be pretty relaxed about my presence on the deck.
Mary Ann had a reasonable quantity of food for supper (a hamburger, sweet potato fries plus a big bowl of strawberries and ice cream).  Mary Ann has gone to bed and so far seems settled.  We will see how 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.

 

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.

 

April 13, 2010

Privileged or Overwhelmed?

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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Yes!!!  There has been an especially thought provoking thread of conversation in the last couple of days in our online group of Caregiving Spouses of those who have a form of Lewy Body Dementia.  What is shared there is just for the membership.  I will only comment in a general way what issues have been raised.

The group is a place where members can vent freely without fear of judgment.  We can whine, scream, cry; we can reveal what is going through our minds even if it is not very nice; we can complain; we can talk candidly about things that would gross others out; we can be matter of fact about matters that would frighten those who have not been in our shoes.

We all have a common enemy — the disease that is stealing from us our Loved Ones and at the same time the life we might have had were the disease to have passed by without stopping at our place.  The recent thread has ruffled feathers as members have disagreed on how to talk about what we do, the lives we have now that Lewy is part of the family.

Some talk about the unfairness of it and the pain and the waste of the life they wish they had and the ultimate defeat that comes at the hands of the disease.  Some write when they are depressed by their powerlessness, when they are grieving the loss of the person they love while that person’s body still needs care, while that person’s physical presence may be threatening, or simply vacant of recognition. Some feel like victims of things beyond their control.  Some cannot tolerate the thought of seeing the situation we are in as a privilege.

Some talk about the privilege of caring for their Loved Ones.  Some see the care being given as a choice made by the Caregiver.  They could have run out on their Loved Ones, but they have chosen to stay.  Some find satisfaction in what they are doing.  Some see their caregiving as their current job, providing them with meaning and purpose.  Some refuse to allow themselves to be victims.  Some make the best of the situation seeing positives that come out of it.

There is a continuum of feelings and perceptions that has the above attitudes at opposing ends.  For lots of complex reasons that have to do with people’s family of origin and life’s experience and world view, most of us gravitate to a certain place on that continuum as our home base.  With that said, at one time or another any of us can be at either end or anywhere between.

What is helpful is to have a place to go where there is permission to admit to being anywhere along that continuum — no apology needed, no justification, just understanding and acceptance.

I will admit that my home base lies in the place where there is acceptance of our lot being no better or worse than any other lot, just different.  I don’t feel victimized.  It feels very right to be enjoying a healthy relationship, fulfilling promises made.  I feel very privileged to be able to actually make a difference in the quality of life of someone else with actions, not just words and occasional gestures.  While I would not choose this disease for Mary Ann, I am grateful for the growth in our relationship, the strength of character it has brought to the surface in our Children and Grandchildren, the wonderful friendships of so many good people surrounding us with help and support, what it has taught me about real love, not the stuff in the movies, the depth of faith that has grown from knowledge to experience of the Presence of God and God’s unconditional love and acceptance moment by moment every day.  I wouldn’t trade my life for anyone else’s.

At the same time, I can scream in frustration and feel overwhelmed at any point on any day of the week.  When my Lewy Body Dementia Caregiving brothers and sisters vent I am with them.  When they suffer, I am with them.  When they celebrate victories, even little ones, I celebrate with them.  They reveal courage as courage really looks when lived in the throes of real life, not as portrayed in the movies.  It is courage that can be messy and ugly and smelly and scary and enduring and bold and beautiful.

Privileged or overwhelmed?  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.

 

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