July 4, 2010

It was a Friday in April of 1972

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , |
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Mary Ann, Lisa and I spent two summers at Camp Beaumont outside of Ashtabula, Ohio.  We packed up enough of our belongings in a U Haul trailor to live in a one bedroom log cabin for each of two summers.  Milt was one of three of us on the faculty who hung out together.  Milt was the art teacher.  He went on to become the head of the Art Department of a college in Nebraska.  Milt was also active in Scouts.  He convinced me to take a summer job as the Catholic, Protestant and Jewish chaplain of a large Scout Camp of some 1200 acres, with 36 sites for troops.

There was a little ring of six or eight cabins for the staff of the camp.  Mary Ann and Lisa hung out with the other families while I ate with the troops, explaining the Religious Awards.  Almost every meal was hot dogs and beans, except for the Jewish troops, who served Kosher hot dogs and beans.

The second summer I bought a bicycle for $3 at a garage sale and road it all summer long.  I had calves of steel that summer.  Poor Lisa got poison Ivy once from the socks I wore with the Scout shorts.  The cabins were simple and very rustic.  It really was a very pleasant setting.  Since we were so close, we made it to Niagara Falls for a visit.  There was a classmate there who took us out to a nice Seafood restaurant to have a leisurely paced meal at a very nice restaurant.  We visited a mushroom farm which was really fascinating.  We ate or put in the freezer package after package of white button mushrooms.

When we were visiting our families in Aurora the Christmas of 1971, driving to my parents house, some smoke came from under the dash.  We never found out what it was, but it was a little unsettling.  After we got to my parents’ house where we had been staying, Mary Ann started feeling badly.  In fact, she began to become rigid as in a mild seizure.

I took her to the Emergency Room in a small nearby hospital.  The doctor had a thick German accent and was about as arrogant and rude a person as we had ever encountered.  He simply decided that we had been arguing and she had gotten so upset that she reacted physically.  It was not so, but he did not believe us and looked for no other explanation.  The next day we went to the doctor we had both grown up with in Aurora.  He put Mary Ann on an anti-seizure medicine as a precaution.  We later discovered that at that time Mary Ann was in the first weeks of being pregnant with our Son.  I guessed that somehow that triggered it, but I have often wondered if that event could have triggered the Parkinson’s.  The literature on Parkinson’s would allow a brain trauma of some sort as a triggering event.

With a second child on the way, we realized that the little house we were  renting would not be big enough for four of us.  We started looking for a house to buy.  We decided to consider a duplex in hopes that the rent from the second unit would help pay for it.

On a Tuesday in April we put $500 down as earnest money on a duplex.  It was the Friday of that week, Mary Ann four months pregnant, a contract out on our first house that Principal Gunther (Gint) asked for an appointment.

Here is how he said it.  We need a new head of the Religion Department and you are not yet ready for that.  We will not be renewing your contract next year.  You need to start seeking a Call (job offer) someplace else.

It was as if the floor had just dropped away, and there was nothing there on which to stand.  (Why do I resonate to that description again now?)  I had to go home and tell Mary Ann that once more, she was pregnant and I had no job.  I called the realtor, who, gratefully, was able to get the $500 check back.

I can only guess that Mary Ann was probably wondering again what she had gotten herself into when she married me.  She had the decency not to say it out loud to me.

When I had left the Principal’s office I went to talk with the other of the three of us who hung out together, Jack.  Jack taught English, but his passion was Drama.  He went on to the English/Drama department at a College in St. Paul, Minnesota.

I have no memory of that weekend and the beginning of that next week.  I do, however, have vivid memories of what started that next Wednesday.

Enough of that for today.

I am now writing from Louisville, Kentucky.  I have been here since Friday evening.  It is good be with Lisa and the Girls and Denis.  It was painful to leave the house Friday morning.  I usually love getting on the road and driving somewhere.  There has been an exhilaration, a freedom I have always felt out on the open road.  I had no such feelings.  It seemed as if I was leaving her behind.  Someone who had lost a spouse recently said that she doesn’t like being away from the house and gets anxious to be home, and then she doesn’t want to be at home when she gets there.  I understand.

It felt very different to be traveling without the constant apprehension about needing to find a bathroom and dealing with taking her into the women’s rest room.  Ironically, the rest area I stopped at in southern Indiana, had a Unisex bathroom.  Now I don’t need it.

It has been good here to be with the Kids and Grandkids.  It is easier not to be dealing with the challenges of stairs and bathrooms and wheelchairs, but I would do it in a minute if I had the chance to have her back.

Yesterday I stopped at Walgreen’s to get a birthday card for Lisa, whose birthday is today, the Fourth of July.  Do you have any idea how many “to Daughter” cards there are that say “from Mother?”  It caught my insides as I tried to pick out a card — something we would have done together.  I picked one that was from both of us.

Yesterday evening was a party that Lisa and Denis had arranged with many of their friends.  Some of them had already met Mary Ann and me in the past.  Lisa and Denis have a wonderful group of friends that function sort of as a local family.  I enjoyed the evening since conversation is a helpful   to me.  There were Kids playing everywhere.  It was entertaining to watch.

Today, Sunday, it was clear from the moment that I woke up, that it would be an uncomfortable day.  I didn’t realize how much I would struggle to keep it together later.  I find the worship services at Lisa and Denis’s church to be very meaningful.  They do a full liturgy, but in a relaxed and welcoming way, rather than a formal way .

Todd who does the music is a real gem.  His work at the keyboard is reverent and accessible.  There may be jazz, classical, or any number of different styles, always perfectly done.  Pastor Paul preaches using lots of visuals, mostly images of great art pieces.  The service is on a large video screen at the front of the church.

Today the service and message were on healing.  The wording of almost everything was not only very compatible with my current need, it spoke almost directly to it.  In many traditions anointing with oil is a liturgical practice intended to bring an awareness of God’s healing into a person’s consciousness.  Today, just before the end of the service the option of going to the rear of the Nave to receive a bit of oil on one’s forehead and a prayer by one or both of those at the station.  It is not done in a magical way but in a way that draws to together the pain and the healing presence of the Lord’s love.

I decided to take advantage of that opportunity.  By the time I returned to my seat, tears were streaming down my cheeks.  I worked hard at trying to keep it from being too obvious and distracting to others.  Lisa was crying quietly when she returned too.  The girls were watching us as attentively.

I was able to talk with folks again after the service.  There were some good conversations with some very interesting people.  During the rest of the day, we did some shopping, had coffee, ate out, sang happy birthday and came home to rest.

Denis and I went shopping at Best Buy and I ended up buying a laptop computer so that when I am traveling I can continue writing.    By the way, I am continuing to work on the thank you notes.  They have all been written, but they now need to be addressed, sealed and stamped.

I stayed back from the trip to see fireworks tonight so that I could get a head start on writing.  Now, I need to get some rest. (Too tired to edit the post, it is gong out as is.)

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.

 

June 27, 2010

“One Foot in Front of the Other”

Posted by PeterT under Daily Challenges, Help from Others, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , |
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Tough day.  Sunday afternoons — I knew it, I remembered from when I was at college missing Mary Ann on Sunday afternoons.  I found out today, that apparently what I am going through has some similarity to turning 13.  I went to a musical titled “13” this afternoon.  It was written by kids and performed by kids.  It was a wonderful distraction until I realized that what the kids were saying at the end fit not only the crazy change that comes at 13, but a change that has come with the end of one life as I have known it, and the beginning of a future about which I have no clue.  Here are some excerpts from the lyrics of a couple of songs that came at the climax:

If that’s what it is
Then that’s what it is
You’re probably right to just forget it
Lets face it you’ve worked so hard and now you’re scarred
And free of any hope
I guess you should mope
Forget what you’ve planned
Hey, I understand

If that’s what it is
Then that’s what it is
Though that’s not the way I choose to see it
I have my own view that works with all these jerks and unenlightened fools
I make my own rules, I do what I can
If I hit the wall then maybe its all a part of the plan
Tomorrow will come, today will be gone
And so I put one foot in front of the other
One foot in front of the other
And just keep walking on [from “If That’s What It Is”]

Day turns, today turns, today turns, today turns, today turns, today
And I’m a little bit older
A little bit faster
A little bit closer
A little bit
Day turns, today turns, today turns, today turns, today
And the sky goes blue
And the sky goes black
And no matter what you do
You can’t go back
You go day into day into day [from “A Little More Homework”]

The message hit home since I am exceedingly vulnerable a the moment.  The main character is a Jewish boy preparing for his Bar Mitzvah.  God plays a role in his thinking.  The message is not unlike the core of the message of the Christian Gospel.

The pain reached a new level of intensity for a while this afternoon.  The harsh reality that what is, is, and I can’t change it keeps trumping all my attempts at doing all the proper things to get through these days.  No matter what I do to make it better, it doesn’t get better.  That is exactly what I have to come to terms with.  I have to do this to make my way through it to the freedom to live with joy again.  And yes, that will mean just putting one foot in front of the other.

The morning went well.  I did make it to the 8am worship service.  I did spend time talking with folks I have known for many years and come to love.  I hung around as long as I could, but finally, I had to head home again.  Then I did the usual chores, fed the birds, watered lots of plantings around the house, did a couple of thank yous, read and responded to a couple of emails.

I was grateful to have the option of the musical available.  Being alone would not have been a good thing.  I sat behind the parents of one of the actors, all who are members of the church I served for so many years.  I enjoyed talking with them and watching Caitlyn sing and dance.

The kids did a great job in every respect.  As the climax came and brought resolution and discovery, what I heard seeped into what I am experiencing.  I was able to keep from revealing in any way what I was feeling, but it took every ounce of my resolve to accomplish that.

After leaving there, I did not want to go home to that damnable empty house — even with it’s waterfall (for which I continue to be very grateful).  I drove over to the local university Art Gallery, to discover that it had closed ten minutes earlier.  I just got gasoline, a coffee refill and headed home.

There was a phone message from a former parishioner and friend who has been through what I have just gone through.  After supper, I phoned him and had a very helpful conversation.  He is coming over in a couple of days for me to do some venting with someone who understands without my needing to try to explain the intensity of what is going on.

At various times through email or phone calls, three lunches and an afternoon coffee are now on the calendar in the next three days.  I am grateful for all the help that is being offered and am not too proud to accept it.  It is hard to have been a Caregiver in both the Ministry at churches for forty years and with Mary Ann for most of the the twenty-three years of her illness, and now be in the role of accepting help from others.  I have felt it a privilege in the past to have people let me into their lives to minister to them.  Now I get to give others that same privilege.

A theme in the song “A Little More Homework” is:

If you stand here behind me
And you call me a man
And you’re counting on me to come through
You should know that I’ll give you the best that I can
But we all have a little more homework to do

I certainly have a lot to learn.  I have a lot of homework to do, like it or not — and I don’t!!  I would like to claim that I am going through this so intensely because I have chosen to learn from it.  That would be a lie.  I am going through it so intensely because I have no choice.  It is what it is.  I hope to find new levels of understanding through this experience.  In some odd way, the pain is a gift from God, to break open my heart so that He and those I care about will have greater access.  Now, I am just longing for healing.

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.

 

June 25, 2010

She Was Already Engaged!

Posted by PeterT under Meaningful Caregiving, Relationship Issues | Tags: , , , , , , |
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I didn’t know — honest!  I wondered why her Mother was crying in the portico at church one Sunday. She wasn’t wearing the ring.  When finally we talked about it, she said she wasn’t wearing the ring because she had decided to send it back to Allen, who, if I understood correctly, was in the military in another part of the country.

She also told me that before Allen, there had been Louie.  She was also engaged to him, for how long I don’t know.  If I got it straight, both of them were at least a couple of years older than she.  Joy, Terry and Cherri have the straight scoop on that.

I remember the first time we kissed.  We were riding (not parked) in the back seat of the car as four of us were headed somewhere, who cares where.  I don’t know how many times we had dated when that happened.  I just know it happened.  The earth didn’t shake, there was no thunder and lightning, no bells ringing, but darn near it.

I remember sitting upstairs in the old parsonage, where the Vicar (pastor in training on his internship at our parish) and a few of the guys were talking.  The subject of my having had a few dates with Mary Ann came up.  They assured me that I was not up to the task of taming that feisty lady.  They were right.  I just married her, I did not tame her.  By the way, I have no doubt the other guys in the group were hopelessly jealous of me.

I remember one time at Mary Ann’s house when a bunch of us were there, she said, “Where’s my Man?”  She was talking about me.  My heart jumped right up into my throat.  At that time in my life, the stature, big ears and pointed nose remained the same, but I had worked out regularly that first year of college.  I was 135 pounds of toned muscle, having done a record 17 back handed pullups during the physical fitness test we took.  I could bench press my weight.  I curled 90 pound weights regularly.  By the way, now that I have been lifting Mary Ann for so many years as her Caregiver, I am again 135 pounds of toned muscle, just wrapped in 30 pounds of fat.

As the letters I wrote to her confirm, I fell head over heals in love with her in short order.  I wrote her every night for the next three years, other than summers, when we were together.  During that time, Sunday afternoons were the worst, I missed her so.  The second and third years of dating were during my years at a pre-Seminary school in Ft. Wayne, Indiana.

In addition to the letters there were weekly phone calls.  In those years, long distance calls were very expensive, a luxury.  The phone calls were less than satisfying.  The letters were better.  Often when we called the conversations found us in different moods.  Mary Ann never liked talking on the phone.  She was not overly sentimental and I was hopelessly lonely and in love.

Weekends together came after much anticipation.  The pattern was, a couple of days to get re-acquainted and in tune with each other, and then it was time to say a painful goodbye.  One day, she surprised me by leaving for church in Aurora in the morning and arriving in Ft. Wayne four hours later for lunch.  I won’t forget that day.  Her parents were very displeased even though she was 22 or 23 years old at the time. She had not told them what she was doing.

Summers were great.  By that time my parents had moved to a house they built at what we called the farm, my Dad’s dream place in the country.  He used every penny he and Mom had saved to build a three bedroom house in the woods, with a creek running by.  Mary Ann lived in town.  We were twenty miles apart.  After a while I could practically drive that blacktop in my sleep.  In fact, many times, I would become alert again after I had made a treacherous S curve with no memory of doing so.  That 1958 Chevy Impala with a powerful V8 engine could fly.  It was my Dad’s car.  I still didn’t have a car of my own.

Yes, I stayed out very late and got in trouble with my Dad more than once.  We were just talking!  Again, let me be clear.  We played by the rules and waited until we were married.  She made sure of that.  I was a typical young guy with hormones raging (cover your ears, Lisa and Micah).  By the way, is this in the area of too much information? That is all I will say about that.

Mary Ann and I were never afraid to argue with one another.  Mary Ann was strong willed, and as much as I loved her, I was willing to express myself also when something seemed unacceptable to me.  Sometimes we wondered if we should stay together, but making up was such fun.  (Again, too much information.)  I wonder if our ability to argue during those years helped us learn how to survive together and love each other with a lasting love.  We didn’t put each other down.  We just got mad at each other and said so when we were.  We could do passive-aggressive pretty well too.

At the end of my Senior year in college at Ft. Wayne, I finally got a car.  It was a 1950 Chevy in mint condition with 43,000 miles on it.  I got it early in 1965.  I drove it over to St. Louis at the end of that school year, ostensibly to check out the Seminary campus.  When I was there I went to a little office on one of the upper stories in an old building in downtown St. Louis to a wholesale jeweler to who catered to Lutheran Seminary students.  I got a diamond that is of exceedingly high quality, almost a half caret (pretty special for a college kid trying to make it on his own) and beautiful.

I surprised her with it one evening at the beginning of that summer when we were together at my folks place.  As is now obvious, she said yes!

Enough for now.  Like it or not, the story will continue in the next post.

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.

 

May 25, 2010

Down, But Not Out

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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I felt pretty low this morning. She was up some during the night, but not as bad as some nights.   Mary Ann’s dementia was pretty strong.  Her words were still pretty much unintelligible. She insisted on getting up very early.  I was not sure if she would ever calm down.  She was hallucinating and grumpy.  I felt pretty much trapped, barely able to manage a shower and responding to my own call of nature with Mary Ann up and moving. I felt unusually tired, not just physically.

She finally did become more subdued, putting her head on the table as she sat.  She ended up in bed and was only up for a small breakfast and a very small lunch.  At lunch I had to hold her head up to get any food in her mouth.  Later in the day, she was up for a short time when Volunteer Coordinator Mary phoned and brought us Baskin & Robbins ice cream.  Mary Ann ate only a very few spoons of ice cream with me standing up beside her holding her head and upper body up, feeding her while Mary held the cup.  She then pretty much fainted and I took her back to bed.

She has had no supper either.  Once in the afternoon she did get up for a very short time.  She stood up to go in the kitchen to get something to eat and when she got near the bedroom door, she changed her mind and went back to bed.  She has at various times been doing a lot of vocalizing and jerking when lying in bed ostensibly asleep.

I have no clear expectation concerning how she will react to removing the additional dose of Seroquel she had been taking for eight days. This is the second day with only the evening dose. I am pretty apprehensive about the impact of the change.

It is easy to feel very helpless in the face of things over which we have no control.  Losing the care of the doctor on whom we have depended for so long, who has performed veritable miracles with medications over the years, was just another evidence of our vulnerability.

What has happened throughout the day today has provided a glimmer of possibility — only a glimmer, but at least something.  Talking with the folks at hospice, phoning a couple Psychologists in the city whom I know and respect, began to produce some results.  Both Psychologists called back with helpful information, the Hospice Nurse made her weekly visit and had done some checking, the Hospice Social Worker phoned and came over with some helpful information. Then Volunteer Coordinator Mary brought us the ice cream treats.  I am still bone tired.  I don’t know what that means exactly, but it sounds as I feel.

As tired as I feel, there is also the feeling that we are beginning to regain a little control in a situation that is hopelessly out of control.  It may only be an illusion, but if it is, it is a helpful illusion.

At the suggestion of one of the Psychologists, I have contacted a Senior Diagnostics program at a local hospital.  Apparently the Psychiatrist in charge is especially capable of dealing with complex clusters of symptoms and diseases — that certainly is Mary Ann.  The person with whom I spoke on the phone knew about Lewy Body Dementia and seemed to understand that it had to be treated differently from Alzheimer’s Dementia. While a few days in the hospital would be among the last things either of us would choose, at least it is an option.

The other Psychologist gave me the name and number of a Neuro-Psychologist whom he knows well and respects very much.  While a Psychologist is not the one who prescribes the medications, he/she always has a close relationship with a Psychiatrist who can do so.

The Hospice Nurse had talked with their Medical Director, a Physician in Kansas City, about our situation.  She indicated that if we don’t get someone soon, he can make sure we have the medicines we need.

The Hospice Social Worker reviewed the residential options and will do more checking on those.  She provided an idea of costs, indicating the layers from least expensive of having help here at home (of course our preference) to the next layer of small care centers that are in homes with very personal care to the larger nursing homes that accommodate those with dementia.  She mentioned one not far that a Social Worker friend had declared to be wonderful.  A clearer picture of options helps fuel the feeling of having some little bit of power in this situation, some choices.

I also sent the fax to the Neurologist who declined to continue to treat the hallucinations.  I asked if we should still plan on keeping out next appointment in a few months since Mary Ann still has the Parkinson’s, which he has treated for so long.  Then I asked if he would still respond to requests for refills of the medications he has currently prescribed for Mary Ann.

There was one especially interesting sidelight to the day.  Many months ago a request came through the online group of Caregiving Spouses of those with some form of Lewy Body Dementia.  It was from someone in the Chicago area who writes articles targeting Seniors for a Health Insurance provider’s magazine.  The magazine just goes to enrollees in Northern Illinois (if I understand correctly).  When the request came, she was looking for Seniors who did Blogging and had an Illinois connection.  Both Mary Ann and I grew up in Northern Illinois (Aurora).  I responded, but heard no more.

Yesterday she emailed and today interviewed me on the phone.  She had great questions about our situation, how and why I started blogging and what purpose it serves in our situation.  It was just nice to have someone from completely outside our circle spend forty-five minutes paying attention to our situation.  Now that I am not in a circumstances that provide much feedback, it felt good to hear someone who is actually a writer assessing my blog posts in such a positive way.  I have no way to judge the quality of the writing.  I just need to write to get this stuff out of my gut.

When she asked one question, what popped into my mind and out of my mouth was very revealing to both of us.  All through the day I am thinking about what is happening in terms of how and what I might write about it.  I realized that I actually feel as if I am not alone when things happen, especially things that push me past my limits.  Whether or not it is true, I feel as if you who read this are part of what is going on; you notice us; and, judging from the occasional comment, you are concerned about us.  I realize that sounds very self-serving and ego-centric.  It is.  I admit it — but it sure helps.

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.

 

January 22, 2010

Local Resources and Support Systems Help

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , |
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“What day of the week is it?  What month is it?  What year is it?  Remember these three words, pen, car and watch.  Do you ever feel hopeless?  If so, is it all of the time, most of the time, some of the time, a little of the time?”  Tim asked those and very many other questions.  He asked Mary Ann if I was being nice to her.  I made a point of leaving the room for some of the questions, so that my presence would not skew her answers.  He got a current list of medications.  He checked for any changes in the information from last year.  Tim is a Case Manager from our local Area Agency on Aging. By the way, Mary Ann did not do quite as well as usual.  She aced the day of the week and the month, but could not come up with the year.  In the past she has usually remembered at least two of the three words.  He always asked three or four times during the interview what the three words were.  This year she was not able to manage remembering the words at all.  On the positive side, the number of falls has been reduced dramatically.

If I understand correctly, there is such a place accessible to most everyone.  Our Area Agency covers three counties.  Tim comes a couple of times a year.  Once is the major information gathering time.  The book the Agency puts put out each year has hundreds of resources listed on its many pages.

It is through Tim and JAAA that we connected with the local County Health Department.  In fact, coincidentally, Public Health Nurse Linda from the County Health Agency will be coming tomorrow for her assessment.  She comes every couple of months.  It is through her that we have had Bathe Aide Zandra for the last few years every Monday and Wednesday mornings.  We pay for that service (around twenty dollars a visit).  Those who do not meet certain income guidelines have reduced fees for the service.

Nurse Linda brought us our flu shots this fall.  She visits to see if the Bath Aide situation is working well.  She checks to see if we have any other needs, although there are many limits on what she has time or money to do for any given situation.  She and Tim are always interested in Mary Ann’s falls, any physical problems that might have to do with her safety and the quality of her care.

Even though we are pretty well self-sufficient, it feels good to know that there are folks out there paying attention to our needs, whom we can call if major problems emerge.  We can get help finding and evaluating resources.

By virtue of being active in a church, we have additional resources available to us.  Our congregation has a Parish Nurse.  Margaret is available a couple of hours a week at church to check blood pressures.  She comes to visit regularly to bring flowers and food and help out in any way she can.

In our case, the cadre of Volunteers from church is a major support.  As I often mention in these posts, they come and spend time with Mary Ann, enriching her days, giving her social contact and a break from my constant hovering. The visits also give me a chance to run errands, or meet with friends over lunch/coffee or head out for a breath of fresh air, or have some time for reading and meditation. Sometimes, as happened earlier this week, they bring food.

One of the major support systems for me is the online group of Caregiver Spouses of those with some form of Lewy Body Dementia [LBD].  That group has so much in common that we can be completely open in sharing our frustrations and fears in language that would scare those who have not been through what we are going through.  We can share ideas that actually have been tested in the lab of daily living with LBD or PDD [Parkinson’s Disease Dementia].  It is surprising how much it helps just to discover that what your Loved One is experiencing matches what many others are experiencing.  We are able to talk in a matter of fact way about things that would be terrifying otherwise.

In the course of writing these posts I have often mentioned Mary Ann’s Tuesday morning group.  That is part of her support system.  The Spiritual Formation Group that meets at our house on Wednesday mornings is a part of my support system.  Those groups, corporate worship experiences and personal devotional experiences combine to nurture our Spiritual health.  Sustaining friendships to the degree possible also helps us maintain a level of equilibrium in our out of control corner of the world. The local Parkinson’s Support Group provides the chance to have some face to face time with others dealing with the same challenges.

Whether or not you are aware of it, those of you who read this blog are important to my ability to continue in the role of Caregiver without losing my bearings.  During each day, I think about what is going on in our lives with an eye toward what I will say in the post I will be writing next.  As I write about it, what has gone on in that day or two begins to come into focus, allowing me to gain some sort of perspective on it.  That perspective steals from it the power to disable and destroy.  The struggles are difficult enough to deal with, without my giving them more power than they already have.

While just writing about the day and processing the events is helpful by itself, it is the awareness that there are people reading those words that brings with it some external validation.  I have only numbers on a metrics page and a few comments to verify that there are people out there listening, but it makes a difference knowing that you are there.

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.

 

January 13, 2010

Eye Problems Emerge

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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It was an odd night.  Mary Ann struggled with the hallucinations and restlessness again last night.  I was up late working on last night’s blog post. After settling, she slept reasonably well.  I got up this morning to get her ready for Bible Study.  Her need to sleep trumped her will to get to Bible Study.  It was clear that she would not be able to get up.

I had showered and cleaned up in preparation for getting her ready to go.  When it was clear that she would not be going, I laid back down on the bed, since I had accumulated a need for sleep also.  It was not until almost noon that I woke up.  She got up about forty-five minutes later.  As I was getting dressed she asked if we could use the Visine again this morning.  She had not yet opened her eyes, which is not unusual for her — one of the collection of problems that come with the Parkinson’s and the medications used to treat it.

When she lay down for me to put the Visine on her eyes I saw it.  There was a swelling about the size of a small marble, more accurately, the size of a garbanzo bean (how is that for descriptive) in the corner of her right eye next to her nose.  It looked as if a tear duct might be clogged.

Mary Ann has had problems for a long time with her eyes.  She has had the struggle to open them frequently.  They have on occasion started watering profusely.  It has not been unusual for her to ask for the Visine.  In recent weeks sometimes there has been a large quantity of matter at the edge of her eyelids, usually her right eye.

Today’s swelling precipitated the call to the Ophthalmologist (an Eye Doctor with an MD).  At first the call was a little uncomfortable.  The receptionist seemed almost annoyed that I was calling about an appointment.  She tried to get us to go to our Primary Care Physician or Optometrist first.  I made the point that we would just end up back with the Ophthalmologist.  I had explained what was going on with Mary Ann, and finally she said she would try to talk with the Dr.’s nurse.  Gratefully, when she returned, there were a couple of options for tomorrow.  We will see the Doctor at 2pm.  I was puzzled that from the moment the call began the tone of the receptionist seemed to suggest that I had no business calling to get an appointment. I have met the doctor before, years ago when I had a cyst on an eyelid removed.  She seemed very pleasant and very competent.

This afternoon we had another appointment with Stacey about the remodel.  She brought some great options for window coverings for the new sunroom, and a book of samples of cork flooring for that new space.  The look of the cork, its durability, the warm feel of it, its ease of installation and its ability to cushion a fall have all combined to convince me that the cork is the way to go.  One thing drawing me to it also is that it is not one thing pretending to be another.  Ceramic tile would hurt Mary Ann if she fell.  The laminates look great, but still try to look like something they are not.  There is more deciding to do, but we seem to be progressing.

In reflecting in last night’s post on my retirement and the grief work that needs to be done as I let go of a life-long career and identity, I concluded the post this way:  “I now serve here at my house.  The need here is clear.”   The grief work that is going on at this point in my journey involves letting go of what has been.  It also includes making the transition to what my life is about now.  I suspect that transition is not yet complete.  One of the reasons writing these posts is so helpful is that doing so provides me the opportunity to gain a better understanding of what is going on in my own heart and mind as we tackle the Parkinson’s and its consequences in our lives.  Sometimes my mind is in one place and my gut in another in acceptance, feelings of fulfillment, and finding meaning in what we are doing her together.

The journey goes on, the processing of each experience is another step in that journey.  Just as is so at this time of the year in the thawing streets of this city in Kansas, there are a lot of potholes to be negotiated.

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.

 

December 4, 2009

Eating Out Remains Difficult

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , |
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The meal was good.  The eating was not.  Mary Ann got some food eaten, but not very much.  She would let me cut the meat and break the dessert’s crust into bite-sized pieces, but, again, she would not let me help her by feeding the food to her

This public place was tonight’s Parkinson’s Support Group Holiday meal.  Since everyone there is either a Caregiver or the one with Parkinson’s, I hoped Mary Ann might be more willing to allow me to help.  Not so.  The meal was catered by folks who do a nice job on the food.  They also had extra servers, more than would normally be needed when using a serving line.  The extra servers helped those of us who were trying to carry plates for two and those whose dexterity is limited.

We sat across from former parishioners that we have known for many years.  He has had Parkinson’s much longer than Mary Ann.  We enjoyed the various conversations. I guess to be more accurate, i enjoyed them.  Having retired from a profession filled with hours of converations and interactions with others, retirement has put a crimp in my opportunities to talk with folks.  As a result, when any opportunity arises, it is hard for me to shut up!

While I always tested very well in the quanitative portion of the standardized tests, the verbal scores were not quite as high.  That seems pretty odd to me since my life has always been about words.  I always loved words.  I used them to get out of fights with bullies (it helped that when I was in elementary school I was among the tallest and strongest of the kids  — I am still the same height I was in the Sixth or Seventh Grade).  I loved learning to use big words, always making sure I used them correctly.  Some people express their sadness with tears, their anger with violent actions, their frustrations by acting out, their happiness by shouting for joy, I talk.  I think and analyze and process and then frame the feelings with large quantities of words that help dissipate the pent up nervous energy created by the feelings.

At the same time, I love solitude.  I can spend hours just soaking in everything about the moment and the space I am in and the thoughts that fill my mind, often bumping up against one another.  I love the periodic retreats that provide almost three full days of utter solitude, walking, watching the wildlife, gazing at the clouds, smelling the scents, reading, thinking, journaling.

I guess what precipitated the above diversion from Mary Ann’s challenges  to my love for words is the fact that I need the time out with others more than Mary Ann does.  It is part of my therapy.  I am usually pretty ambivalent when outings are approaching, wanting to stay home to avoid the hassles associated with going out.  But when I get to the gathering, I thoroughly enjoy the interactions and conversations.

Back to Mary Ann’s struggles with eating.  When I asked Mary Ann about lunch today, she said she wanted BoBo’s for lunch. The Food Network’s Diners, Drive-ins and Dives did a special on BoBo’s.  We didn’t really have time to go into the diner to eat (it is the size of a postage stamp), so we got take-out from a drive-in stall.  I have to admit that it was a bit of a relief that we did not have time to go in.  One reason is that I wanted to eat the food we already have in the fridge (my frugal streak).  The second reason is that I have a hard time watching Mary Ann eat when the soft fish sandwich with tartar sauce is squishing through her fingers, dropping on the table, her clothes and the floor.  There, I said it!  I am ashamed to admit it.  Here she is struggling to deal with all she has been through, just trying to enjoy food that brings her pleasure, and I am so petty as to let a little messiness disturb me.

If we had had time, we would have gone into the diner to eat.  At least I usually don’t let my aversion to the messiness keep me from taking her out to whatever restaurant she chooses.  I am trying here to salvage a little positive self-image after admitting to such pettiness!

Mary Ann slept well last night — good for both of us.  She went to bed a little late tonight.  Let’s hope for a night filled with sleep!

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.

 

November 11, 2009

Wake up! Go to Sleep! Please!

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It was a night from Hell.  We have plenty of them.  I went to be early in hopes that my presence would help her sleep.  Not so.  She wanted to go home more than once.  Often she would get up and when I asked, admit that she didn’t know why she had gotten up.  Once she woke up and said she had swallowed a snake.  I have no idea from where that thought came.

It went on through the night.  Once there were only seven minutes between times of getting up with some need.  The next one was twelve minutes.  Then came a couple about twenty minutes apart.  I am just tired enough that I went back to sleep during each of those short times, only to be wakened again.  I am not sure what words to say to communicate the level of frustration with that behavior.

One of the times she got up, she agreed to go to the table and eat some applesauce.  We started toward the dining room, and soon it was apparent that she just couldn’t walk well enough to make it there.  I asked her not to move, while I ran a few feet to get the transfer chair.  Of course she fell.  My level of frustration was enough that while I was complaining about her not staying still, instead of patiently working out how to get her off the floor in a way that was safe for me and her, I just picked her up off the floor and seated her in the chair.  Yes, she is only a little over 120 pounds.  No, a small 66 year old man with a family history of back issues should not try to pick up someone from the floor, someone who is not able to help in the process, essentially dead weight.

While it hurts, at the moment (six or seven hours later), it is not excruciating.  I am hoping only minor damage was done and that Advil, ice and a call to Chiropractor Tim will eventually take care of it.

Last night, all I wanted was for her to go to sleep!  She got up early again.  I just insisted that she stay in bed so that I could get another hour of sleep.  Gratefully, she did stay in bed for a while.

When she got up, things were pretty difficult.  I, of course, was not in a very pleasant frame of mind having been up and down every few minutes during most of the night.  She was able to get some of her food eaten by herself.  After breakfast she sat by the television in her PJ’s.  She was in popping up mode.  While at the moment, she is not fainting, her weakness and balance are making her vulnerable to falls.  I got a phone call.  Just as I got into the conversation, she hopped up and headed across the room.  I was frustrated by the timing of it, but after determining it was a bathroom need that precipitated it, I got off the phone and got her into the bathroom and seated.

I have not mentioned this much in the last three days, but there has been intestinal activity verging on diarrhea.  Sunday morning when I was gone, she had some major activity.  That activity required a later cleanup that involved removing the toilet seat, taking it to the large basin I had installed in the basement storage area for things like this, soaking the toilet seat in water with lots of Clorox Bleach, scrubbing the hinges with a toothbrush, rinsing, drying, disinfecting the stool itself and replacing the toilet seat.  This is all taught in Caregiver school.

The good news is that the activity does not come often.  It is just takes some extra effort to keep her and whatever else clean.  We have dealt with much worse in this area.  This morning’s trip to the bathroom was not an easy one.

When she returned to the living room, the popping up continued.  She was almost always getting up to look around at the floor.  I don’t know exactly what she was seeing, but it was some sort of mess that needed cleaning up.  Just going into the kitchen to get a bowl of cereal had to be done in short segments of time, often less than a minute in length so that I could check on her and get her seated again.

I had not yet gotten my morning shower.  I could not trust her to stay seated for the ten to fifteen minutes it takes for me to get ready.  She often agrees that she will stay seated, but pretty much does not do so.  I finally realized that the only way I was going to get ready myself, would be for her to be napping.

There is such an conflict of wants and needs that converge on this simple process.  I want her to stay awake during the day and sleep at night.  I want her to be sleeping even during the day so that I am not dealing with the popping up, the constant needs, the hallucinations, not knowing what will come next.  I should keep her up in the daytime, but when she moves into her need-for-sleep mode, she ends up hanging her head and sleeping in her chair, if not in her bed. There is a sense of relief when she is sleeping during the daytime hours, but a dread for the horribly frustrating nights that come when she can’t sleep then.

I suppose I could sleep during the day while she is sleeping.  I don’t want to shift days and nights for both of us.  I want to be tired enough at bed time that I can go to bed and sleep, if she will allow it.  When she is asleep, I have the freedom to do things that nurture my own well-being both for my own sake and so that I don’t lose the capacity to care for her.  These posts have been long and detailed lately because she is sleeping enough during the day that I am free to write.  These posts have been long and detailed these last days since we are almost entirely homebound now and the task is frustrating enough that I need the outlet of writing these posts as therapy.

Then there is the question, how is Mary Ann dealing with this new place in our experience.  She is stuck with the frustration of not having the mobility and mental acuity she has had, and she is stuck with Grumpy Caregiver who gets frustrated with things she cannot control.  She vacillates between days when she is exhausted and just wants to sleep, and nights when she can’t sleep, wants to be up while the person on whom she depends is scolding her and insisting she stay in bed.  She needs food but often not what is in front of her.  She hates the feeling of needing to be fed but often needs to be fed.  She wants to do things for herself but is constantly being asked to sit down, being reminded that she can’t do them.

I wish I were better at this caregiving task.  On the positive side, I think that most of the time I act in ways that are caring and helpful and affirming of who she is.  I try to treat her with respect, recognizing that my words are not always respectful when I am frustrated with some difficult behavior that seems still to be under her control (probably most often a result of the disease more than her willfulness).  I work hard at keeping her neat, hair washed, dressed appropriately, the house in order, beds made, kitchen in order.  I work very hard at determining what she needs or wants and if it is possible, trying to provide whatever it is.  With that said, in fairness, my assessment is based on who I want to be, not necessarily who I am in her eyes.  In the area of this sort of self-awareness, my propensity to feel guilty when I have been unkind provides some internal metrics.  My self-centeredness drives me to do things that allow me to feel good about myself.  My batting average in that task is probably just that, painfully average.

Back to our day: When med time came after she had been sleeping for a couple of hours, I decided not to make yesterday’s mistake.  After I took her to the bathroom, she stayed up for us to head to Glory Day’s Pizza to bring a couple of slices home for her (lunch and supper).  Her mobility was very poor, and she still would not open her eyes, so the trip out to the car and back afterward was pretty difficult.

She insisted on eating the slice of pizza without help.  She only managed to eat the topping (cheese only) from a little more than half of the one piece.  Then she was done.  After refusing once, she finally agreed to a dish of ice cream.  She is about five pounds lighter on our scale than she was the last time she weighed herself before the trip and the hospital.  She has been eating so little it is no wonder.  When I took her to the bathroom after the pizza, as I was getting her clothes down so that she could sit on the stool, she stopped me, asking what I was doing.  She thought we were still in the dining room.

At about 4:45pm, she wanted to get her bed clothes on and get into bed. She got up again when a paid worker from Home Instead to stay for a few hours while I honored a commitment that was important to me.   She was still up when I returned and went to bed at about 9:30pm.  Let’s hope for some sleep 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.

 

September 12, 2009

Bad Day Follows Good Day!

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I am not sure I should be writing a post at the moment.  Maybe later in the day will be better.  At the moment she is napping, and I am able to be at the computer to write.  Last night’s post was almost euphoric after the great trip in the country.  I mentioned before closing that Mary Ann was restless.  She was up every few minutes until about 4am.  Then she insisted on getting up at 8:30am after three or four times up to use the commode between the 4am and 8:30am.

The needs began immediately.  As always, after a sleepless night the hallucinations have been almost constant, resulting it lots of time spent trying to pick up and throw away threads.  At one point as she was sitting at the table preparing to take meds and eat, she asked what the pink mesh was about.  She was convinced that she had it in her hands.

When she has had such a night and gets up early and stays up, there is oddly a great deal of lucidity intertwined with the hallucinations.  She is sometimes almost adversarial.  The restlessness has continued throughout the day up to the nap.  She has been popping up without warning almost constantly.  If I am out of sight for a moment, it is almost a certainty that she will get up.  That means even walking out of the room to get something for her won’t work.

I have asked in every way I know that she let me carry cups and glasses of liquid, since balance and fainting are issues.  Gratefully, it was water and not Pepsi in the cup when she went down, and, gratefully, she was not hurt.  Then there is the button by the toilet stool.  As always I asked that she push it before getting up to avoid falling in the bathroom.  I asked very slowly and carefully waiting to hear her agree to do so, out loud — which she did.  By the time I came back to check, she was half way across the bathroom with her slacks gathered around her ankles.

Last night and today provided a picture of how our lives are now being lived.  Mary Ann’s wants and needs at any given moment in the twenty-four hours of each day determine what I do and when I do it, no matter what my needs are or how I feel.  I have chosen this role, so whining about it is pretty futile.

What increases the level of frustration on a day like today is that there is no one with whom to be angry, no one to blame.  While I am not always shy about letting my feelings be clear, most of the time I do what needs to be done without complaint, and even try to be nurturing when I do it.  It is not Mary Ann’s fault that we are in this situation.  I am not a saint, but it is not my fault either.  Problems like this are not God’s idea of a good time.  God gets blamed for all sorts of things that were not part of the original plan, while often getting no credit for the wonder of life.  God doesn’t play games with folks.  Circumstances like ours happen to good people and bad people and people like us who have both good stuff and bad stuff in us.

I am grateful for yesterday, for a good day, some pleasure for both of us.  I am frustrated today, and struggling to keep it all in perspective.  Writing this post helps give some definition to the day that allows it to begin simply to be a challenging day, not a symbol of our entire life.  There is always tomorrow.

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

 

August 10, 2009

Some Days are Frustrating

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It seems so unfair to complain about frustrations with someone who is suffering from such a terrible cluster of diseases, Parkinson’s Disease, Parkinson’s Disease Dementia, and heart disease on top of all that.  My aches and pains and various annoyances are tiny by comparison to Mary Ann’s challenges.

Someone in the Lewy Body Dementia Spouses online group replied to me this way [I am paraphrasing]:  You may not have the disease, but, as the primary Caregiver, you suffer from it too.

Those of you who know Mary Ann love her and respect her very much.  Those who know her best know that she has a chip on her shoulder that refuses to allow her to let anyone push her around.  It is one of the things that drew me to her and one of the things that drives me crazy!

With this complex and maddening combination of symptoms that come and go and come again, sometimes in minutes, dealing with the ordinary daily activities can be utterly frustrating.

Mary Ann can move from concluding something completely untrue and impossible in her less lucid moments, seeing things that simply are not there, to being completely clear in her thinking, remembering events more accurately than can I. One result of the times of dementia and lucidity being interwoven together, is that I am not sure whether to take seriously what she is saying or not.  I am not sure if she is confused about something, unaware of what she is really saying or doing, or she is willfully exercising pushback, proving again that she can do what she chooses no matter what effect it has on me.

Last night was a restless night.  No amount of begging her to stay settled in bed could keep her from getting up.  Again, there were multiple trips to the commode, even when there appeared to be little or no actual need to use it.  There were changes in the covers, shifts from facing one direction to facing another, need for a snack.  Then this morning she decided to get up at 6:45am to eat and take pills.  Normally, she sleeps until 8:30am or 9:30am.  I was up with her most of the first half of the night.  There is no point in my trying to get to bed and to sleep during her restless times.

After pills and breakfast she wanted to watch television.  Once she is up, I have to be there with her, awake and accessible to her since she gets up and walks, subjecting herself to the likelihood of a fall.  Her schedule determines mine.  She reluctantly agreed to lie back down in bed.  Gratefully, she slept for almost three hours, allowing me to do the same to try to make up for a very sleepless night.

The frustrations continued with our at least daily battle over what to eat.  There were available to her, chicken salad that I had made, fresh sliced smoked turkey and provolone cheese, some lasagna from the freezer, some roast beef and vegetables from the freezer, eggs, bacon, fresh strawberries, blueberries, cantaloupe. seedless white grapes.  I spent at least forty-five minutes trying to get a response on what she would eat.  She came out to the kitchen in her search for something else different from what I had offered.  I asked about the lasagna, which she had liked very much.  She said it wasn’t as good the second time.  That one pushed me to the edge.  I asked again about the smoked turkey.  She said no.  Then, after almost an hour of this, she mentioned salami.  We had gotten that when we got the turkey at the store. It was hard for me to accept that it took that long to find our way to something she was willing to eat.

My assessment of her goal was that we go out to eat.  Since we can’t afford to eat out every day, that goal is frustrating to me.  We had gone out the last three days.  To waste all that food in the refrigerator because it just didn’t measure up to the wants of the moment is an intolerable thought to me.

The rest of the day was spent watching reruns of the most depressing and demoralizing accounts of the criminal behavior presented in vivid detail in a marathon of one of the incarnations of the Law and Order Series.  Since the house is small and I need to be very accessible to Mary Ann, it was hard to avoid at least seeing portions of some of them.

We did manage to get out for a while (a very hot day) to get some ice cream.  Then there was church tonight.  We had some freshly made food brought over to the house by a parishioner and friend later in the afternoon.

In writing this post, I have risked diminishing Mary Ann by speaking so candidly about my frustrations.  She has reason enough to be frustrated with me at least as much as I am with her at times.  She does not have the luxury of writing out those frustrations for others to read.

As unfair as it is, this is one of the ways I process my frustrations so that I can maintain my equilibrium as I serve her needs all day every day — and night.  My hope is that by putting my frustrations into words here, I can be a better husband and Caregiver to her for as many years as we have left together.

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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