Family


Remind me how much I loved weeds and bugs as a child.  I seem to remember writing something about that in an earlier post.  I just about had my fill of weeds and bugs on this trip to St. Francis of the Woods.

I have always loved the outdoors, but I have also always loved being comfortable.  Trudging through waste high, sometimes head high, weeds for a couple of hours, bugs surrounding me, checking me out at close range, stretched my idyllic view of the outdoors to the limit.

I remember walking the woods at my parents’ place in Northern Illinois, loving everything but the deer flies.  They kept me from idealizing the outdoors beyond reality.  Then there was the Poison Ivy.  The world of nature can be a hostile place.

This trip to St. Francis of the Woods was different from the last few times I have gone.  When possible, I usually go after the first frost and before the bugs have come out in the spring.  Cool and crisp air, dried weeds and clear skies have welcomed me the last few years.  This time it was warm, muggy and cloudy.

With that introduction, you might suspect that this trip was not a good experience.  It was.  First of all, while I am concerned for the environment and the well-being of all creatures, insects included, it seems to me that the person who invented the insect repellent Deet should be awarded the Medal of Honor.  I was not bitten by one mosquito, nor did I find one tick on my body, and while the bugs were everywhere, when they landed on me, they didn’t stay for long.

One benefit of coming at this time of the year was that there were flowers everywhere.  The sights were beautiful.  The flowers drew butterflies.  There were all sorts of butterflies of different sizes and colors.  Every once in a while one or two would land on me as I walked through the weeds.  There was one particular species that caught my eye.  It was probably a Fritillary, but I am way outside of my comfort zone in naming a butterfly other than a very few.  It was fairly large, and the brightest, almost, iridescent orange.  There might be as many as three flying around one another in a cluster.

There are now a couple of bee hives at the corner of one of the fields that I walk through.  I gave them a fairly wide berth.  Through the binoculars, I could see hundreds of bees flying in and out and all around the hives.  I am not particularly fearful of bees, but I didn’t want to have any unnecessary encounters by moving into their home territory.  I noticed as I walked through a nearby field, that the flowers were covered with bees.  St. Francis should have a great harvest of honey when the time comes.

The first evening’s trip through the woods provided no bird sightings at all.  The next day, there was more activity.  I was snorted at by some deer hiding in the woods as I walked by.  At one point a couple of does ran through the weeds in front of me from the woods on one side to the woods on the other.  There were a couple of groups of White Pelicans flying overhead, appearing to be headed the wrong direction for a fall migration.

It was hard to find a spot to put my three legged stool so that I could read a bit.  I didn’t want to be completely buried among the weeds.  I managed to find a spot with short enough weeds that I could sit, eat an apple and then read a very few pages.  The muggy, warm air and flying bugs around my sweaty brow made it uncomfortable enough to discourage me from staying long. I did catch sight of a flock of Common Nighthawks going by.  They are not often seen in the daytime except when passing through in the spring and fall.  Nighthawks are in a family of birds called Goatsuckers.  I just get a kick out of knowing that and saying the word “Goatsuckers.”  I need to check online some time to find out how that name was chosen for them.  I wonder if it had anything at all to do with goats?

I walked down to a newly discovered pond very close to the cottage I was staying in.  The pond was sort of ugly and messy looking, very small.  I saw a large turtle sunning itself when I came closer to the pond.  It slid into the water since I was too close for comfort.  I looked at the water through the binoculars to see if I could locate more turtles under the water.  Then I saw him.  I can’ t really know for sure how big he was, since he was just under the water at the edge of the pond nearest me.  The light refracting through the water can make something look bigger than it is.  It was a Snapping Turtle that appeared to be close to two feet long and a foot and a half wide.  He looked far too big to be living in such a small pond.  I watched him for a long time, and when he moved, I was glad he turned away and moved down farther into the pond.  I would not have been interested in him coming my way.

The most meaningful and valuable time on this retreat was the four and a half hours of catching up with a friend from the Oklahoma City area that I hadn’t seen in over thirteen years.  I have to say that John is as close a friend as I have ever had in my six and a half decades.  During the nine years in Oklahoma City, John and I spent many hours early in the morning at Ingrid’s German Deli talking about our faith and journey we were on living it out, John caring for Sherrie, dying of Cancer, and me dealing with the impact of Mary Ann’s Parkinson’s on our household.

When I went on ahead of the family to start serving the congregation in Bethany, Oklahoma, I lived for five months with John and Sherrie, and their children, Hope and Joel.  I cannot imagine more gracious hosts.  Their spirituality was a marvel to behold.  I have been around lots of folks who are committed to their faith, and sharing it with others.  John and Sherrie did it with such genuineness and humility that those around them never were made to feel inferior.

I had the privilege of ministering to and being ministered to by Sherrie as the Cancer entered her life and became the means through which she touched the lives of so many on her way to her death — and life with the Lord on the other side of death.  I had the additional privilege of conducting her funeral, attended by so many that the Sanctuary couldn’t hold them.

If that was not enough, I had the joy of performing the marriage of John and Peggy, as each was led to the other at precisely the right time to begin building a new life together.  It was refreshing to hear how their spirituality has grown and how their life together has unfolded in the years between then and now.

Not only did the retreat provide the refreshment that comes from engaging the natural world at close range, being fed by a meaningful friendship, but I probably accumulated almost twenty-four hours of uninterrupted sleep in those two nights.  This morning there was a gentle rain with soft rumbles of thunder on occasion in the background, providing the perfect setting for lying in bed, sort of semi-conscious, just savoring the moment.

All went well with Mary Ann while I was gone.  Daughter Lisa had some good quality time with her Mom, and Son Micah, Becky and Chloe were able to come over so that we could eat Pizza together tonight.

The time away provided the opportunity to think through how things are going for Mary Ann and me.  As always, there has come a renewed resolve to be more effective as a Caregiver.  Whether that resolve will result in any changes in what I do and how I do it remains to be seen.

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.

This one is a veritable Life Boat, not just a Life Preserver.  Thursday morning (day after tomorrow) I will get in the car and drive a little over five hours on the Interstate through the Flint Hills and on into Oklahoma to St. Francis of the Woods Spiritual Renewal Center.  I will stay over two nights and return Saturday afternoon.

What about Mary Ann???  Mary Ann will have a great time while I am gone.  She will have our Daughter, Lisa, all to herself for that entire time.  Hopefully. our Son, Micah, and family will be able to join the party at some point.  Lisa is flying in from Kentucky as a gift to both Mary Ann and me, so that we can have a break from one another.  Admittedly, 24/7 does wear on both of us. Our Son-in-Law, Denis, will be serving as both Dad and Mom to the girls for the time Lisa is gone.

I have described St. Francis of the Woods in earlier posts.  Lisa provided the opportunity to go some months ago.  While I am at St. Francis, I will walk for hours, read, meditate, all among beautiful wooded paths and open fields.  The Renewal Center includes a 500 acre working farm.  There are only three cottages in the part of the property on which I will be staying.  The cottages are not in sight of one another, so it is not unusual to see no one for hours.

Maybe my love of solitude is the result of being the youngest of five children by so many years that I was raised almost as an only child.  I spent much of my childhood outdoors by myself.  I loved it.  I don’t really remember ever feeling lonely when I was outdoors in a natural setting.

I will take with me a very small three-legged stool strapped to my backpack so that I can stop to sit and read.  I will read some Scripture, a book on Spiritual Formation, and a book titled Quantum Physics and Theology, written by a Theoretical Physicist who later in life became an Anglican Priest.  I will carry my binoculars and look for birds and other wildlife.  I will watch the sunset from a wonderful spot on a hill that provides a panorama to the west stretching for miles.

I will probably sleep for many hours.  At this point, it is quite an unusual experience to have uninterrupted sleep.  I have checked the weather forecast for Coyle, Oklahoma (the nearest town — very small).  The weather is predicted to be partly cloudy, in the low to mid 70’s during the day and the upper 50’s at night.  That would be hard to beat.

One treat that may or may not materialize is a visit with a very good friend who was a member of the congregation I served in the Oklahama City area.  As a physician attached to a University Hospital, his schedule might not allow us time to talk.  I ministered to him and his family as his wife battled terminal Cancer.  Actually, we ministered to one another as we dealt with the Parkinson’s at the same time.  We spent hours at Ingrid’s Deli early in the morning a couple of times a week processing our experiences.  We haven’t seen each other in over thirteen years.

Since there will be no computer access at St. Francis, there will be a few days break in the postings here.  The only electronics at the cottage will be the portable CD player I am taking along.  By the way, there is a fully equipped kitchen including a microwave and, gratefully, a coffee pot.  I will bring some of those frozen leftovers from the freezer.  Cereal, fruit and granola bars will fill out the meals.

As I have continued this series on a Caregiver’s Life Preservers, I am wondering what Mary Ann would consider to be her Life Preservers.  I am not sure our current capacity for communication will provide the answer to that wondering, but I may just ask anyway.

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.

There was a very tasty ice cream treat to be relished.  That always sets the tone for a good time.  The conversation was lively, interesting, silly, serious, and, in general, entertaining.  Eddie and Carol are neighbors and members of the church from which I retired a year ago.  We headed down the block some time before 7pm and returned home some time after 9pm.  Shortly after we got in the door, Mary Ann said, “That was fun!”

If you asked me when last I heard her say spontaneously that she had fun, I would have difficulty coming up with an answer.  I have to admit that I have been struggllng with the caregiving role lately.  I am sure Mary Ann has been struggling with the quality of my caregiving and my impatience with her.  Before we left the house this evening we were not in the best frame of mind.  This evening was a much needed tonic for both of us.

Most of the time it is pretty hard to tell whether Mary Ann has enjoyed an activity.  Words do not come easily to her.  Even before the Parkinson’s Disease diminished her capacity for both verbal and non-verbal expressions of feelings, she was not very demonstrative.  It often took some cajoling to coax out an assessment of whatever we had done for entertainment.

Her response this evening sparked my trying to think of things that she enjoys.  Having been married for nearing 44 years, I can usually determine whether or not she has enjoyed an activity.  I am not always sure my conclusion is correct, but I suspect that most of the time I can tell.

We visited our Son, Daughter-in-Law and Granddaughter yesterday afternoon and evening.  She enjoys visiting our children, their Spouses and the Grandchildren.  That is always a sure bet for a good time for Mary Ann.  By the way, that visit included both pizza and ice cream — can’t beat that!

This morning Mary Ann went to her Tuesday Morning Bible Study.  While because of the confidentiality agreement, she can’t report on the content of their time together, I can tell she enjoys it.  When we are scheduling a doctor’s appointment or whatever it is, she always makes sure that we keep Tuesday mornings clear.  She gets up, even if she is tired and longing to sleep in, so that we can get her ready in time to make it to the class.

Mary Ann enjoys the Volunteers’ time at our home with her.  Yes, part of that is because when they are at the house, I head out and am not hovering over her.  She also has developed wonderful friendships with those who have come to stay with her over the years.  The Volunteers don’t come so much to give me time away, but to spend time with Mary Ann.

I know Mary Ann enjoys time at the library.  She would have loved to run a little book store or work in a library.

She has wanted to get to a movie at various times.  Depending on the movie, of course, she likes to get to the movie theater.  Admittedly, it is seldom that we find something we really want to see.

Mary Ann, of course, likes going out for ice cream or going to a restaurant for a meal.  There are a few televission shows that are must see’s for her.  At the moment The Closer and NCIS are pretty much at the top of her list.

I will keep looking and listening for signs that indicate whether or not Mary Ann has enjoyed an activity.  Her circumstances make it pretty tough to enjoy life.  At least I can try to make sure that we keep in her days plenty of things she enjoys.

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.

Nine and a half hours each way, took me to the family reunion in Northern Illinois and back — one day driving, one day there, one day driving back.  There have been consequences to so much time driving.  I went by myself.  As the Reunion approached, Mary Ann’s increase in frequency and intensity of fainting spells made it seem pretty foolish to try to make a trip to Northern Illinois for the Reunion, then to Kentucky to spend time with the kids there, then back home to Kansas. 

Recognizing how much I wanted to see the family, Daughter Lisa and her family offered to come here and stay with Mary Ann while I drove to the Reunion.  They had a good time.  Son Micah and family came over to join them all at our house.  They had a mini-reunion of their own.  I missed out on it, but Mary Ann was the center of attention for the weekend — a wonderful treat for her.   

Actually she did very well.  Lisa reported that the nights went well.  The night I returned did not go so well.  When I said something about her behaving better at night for Lisa than for me, she simply observed that she knew me longer than Lisa.  She hasn’t lost her dry sense of humor. 

The time in Northern Illinios was well spent.  I arrived just in time for the Friday evening dinner celebrating two siblings and spouses’ fiftieth wedding anniversaries.  We noted that at this point the five siblings have logged 246 years of marriage between them (56, 50, 50, 4 7 and 43).  Add the years our parents were married (59) and the total grows to 305 years for six couples.  As one of the Sons-in-Law noted, that is a pretty good model for those who follow. 

In an album one sibling’s Daughter put together was a picture from our parent’s fiftieth wedding anniversary many years ago.  They were married in 1926.  I remember when looking at that picture of the whole family the first time I saw it in 1976.  Even though by then I was thirty-three years old (married with two children), it was the first time I realized that I was part of an extended family.  I am the youngest sibling by almost seven years.  I felt like an only child.  When I saw that picture, my whole perspective changed.  I became part of a family. 

We enjoyed our time together exchanging the same old family stories, laughing as if it was the first time we had heard them.   Saturday included another, less formal gathering and meal.  There was lots to be discovered about nieces and nephews, great nieces and nephews, great-grand nieces and nephews. 

Saturday also included time with one of Mary Ann’s Sisters-in-Law, renewing the connection with her family.   I would assess Mary Ann to be favorite Aunt Mary in that clan.  Two of her brothers are deceased and the third is estranged.  She has always felt close to her nieces and nephews. 

Later in the day, I got to spend time with one of Mary Ann’s lifelong friends and her husband.  Mary Ann is part of a foursome who became friends around the time they were in the Fifth Grade.  They have been fast friends since.  I, too, consider them (and spouses) to be friends.  However, when the four of them get-together, I head for the hills.  They immediately become four teen-aged girls, laughing uproariously. 

Everyone missed seeing Mary Ann, and I was disappointed for Mary Ann that she didn’t get to be there.  

When I returned Sunday evening, I was very tired, but basically fine.  As the day wore on yesterday (Monday), the consequence of all that driving emerged.  Apparently, some inflammation in my back was pushed over the edge by my return to the routine of assisting Mary Ann getting up and down. 

The pain is located right at the point that seems to serve as the fulcrum for my leveraging her up and down from a sitting position.  I do that many dozens of times in a day.  The level of pain reached a seven or eight on the ten point scale usually used by those assessing pain. 

The pain is problem enough.  What is more troublesome is the prospect of its not getting better, but rather getting worse, since Mary Ann’s need for my help does not diminish as my ability to help lessens. 

At the moment we are walking the line between being able to manage here and not being able to manage here.  Yesterday afternoon, without an appointment, I finally just stopped by the Chiropractor I go to when bone and joint pains come.  I prefer manipulation that targets the pain, to medications that impact the whole body systemically.  I am not averse to pain medications.  I just recognize their limitations and their side effects. 

Ice packs, Ibuprofen, and a second trip to the Chiropractor has brought the level of the pain down from its peak yesterday and this morning.   I have moved more slowly and carefully when helping Mary Ann  up and down, asking her to do more of the work in the process.  I have toyed with the idea of trying to call the church to see if I could get an older female teen or young adult who has pretty good upper body strength to work here at the house for a few hours each of the next couple of days at maybe $10 per hour, just to do the lifting part of the Caregiving task. 

My goal is to move away from the line we are now walking.  The other side of the that line appears to be far less workable than this side of the line.  In fact, it looks pretty frightening.   At the moment, we are in a precarious position, right on the line between doable and not doable.   

My impression is that the pain is lessening and healing is on its way.  Whether that impression will become a reality remains to be seen.  As always, we take one step at a time. 

I certainly celebrate a very comforting and positive relationship with my Brothers and Sisters and their Progeny.  The relationship with Mary Ann’s Sisters-in-Law and their families is also very meaningful.  The connection with Mary Ann’s “girlfriends” is one that is filled with love and laughter.  It is hard to feel down with so many good people who care and about whom we care.

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.

A few posts ago I promised to include responses from our Grandchildren to some questions I suggested.  Tonight I am keeping that promise. 

The first two below are Abigail and Ashlyn.  They are the children of our Daughter, Lisa, and her Husband. Denis.  That family moved here to spend the last two years before I retired near us so that they could help us.   Just the natural attrition over the years had begun to diminish the number Volunteers from our church available to be with Mary Ann while I was working far more than forty hours a week, including evening meetings.  A year ago, when I retired, that family moved back to their home some ten hours away.  The girls got to know Mary Ann well during that two years, since she was at their house or they were at our house two days a week.   Abigail is now 6 and will turn 7 in November.  Ashlyn will turn 5 in a few days. 

Chloe is our oldest Granddaughter.  She is the Daughter of our Son, Micah, and his Wife, Rebecca.  Chloe is 10 and will be 11 in November.  That family has lived about three hours away until moving only a little over an hour away a few years ago.  Chloe can remember Mary Ann from a time when she was much more communicative than she is now.  She has always been ready to help Mary Ann whenever there was something she could do. 

Her are the Grandchildren’s responses:

Abigail’s Notes: 

What do you like about Grandma? I like her clothes.  I think her socks look silly. 

What do you think about when Grandma stands up on her own or when she faints and Grandpa or one of your parents have to go over and hold her up?  I like bringing the wheelchair over.  I think it hurts when she hits her head.  She gets a bump on there. 

What would you like to say to Grandma?  I hope you feel better Grandma.  I wish Grandma could run and play with me.  We would go to the movies and go to the swimming pool and the park. 

If one of your friends had a Grandma that was sick like yours, what would you tell them to do to make her feel good?  Give her some medicine and do what she wants them to do.  Like get her some juice and get her wheelchair when she needs it.  Bring her food in bed.  Let her sleep in.  That’s all.

 Other comments: Grandpa, do you want some help with Grandma? 

 Ashlyn’s Notes: 

 What do you like about Grandma? She’s nice.  I love her.

 What do you think about when Grandma stands up on her own or when she faints and Grandpa or one of your parents have to go over and hold her up? I feel sad. 

 What would you like to say to Grandma? I love you Grandma.  I hope you feel better.

 If one of your friends had a Grandma that was sick like yours, what would you tell them to do to make her feel good? I would tell my friend—I’m sorry.  Tell your Grandma that you love her.

Chloe’s Comments:

grandpa,  what i like about grandma is that if she says that she is going to do something, she sticks to it and never gives up. whenever grandma fainted when i was little i would panic majorly, but now i understand her illness and now know to react in a calm manor. right now all i have to say is grandma to just keep going. if i had a friend that had a very sick relative like my grandma i would just tell them to keep there spirits high.

Needless to say, we are very proud Grandparents.   I think we and their parents would agree that while this hasn’t been easy on the girls, they have grown in understanding of the needs of others.  Hopefully, they will be better people when they grow up than they would have been if they had not had a Grandma who needed their attention and their help.  

If I live long enough to hear about it, I will be very interested in what they remember when they are young adults about these years, what they recognize to be the impact on who they have become. 

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.

When I asked ourt adult children to share some thoughts on their view of our situation and their role in it, I included some questions for their spouses in case they felt comfortable commenting. 
Our Son-in-Law, Denis (yes with one “n”) chose to comment.  Our Daughter and Denis have been married over ten years.  They are the parents of two of our Granddaughters, Abigail (6) and Ashlyn (soon to be 5).   Denis is the youngest of ten children and is great with children, having had very many nephews and nieces to deal with over the years.  His moral compass is strong and healthy.  He initiated the decision that resulted in their family (Lisa, Denis and the girls) moving here (from Kentucky to Kansas) to help us out for the last two years before I retired (which is now a full year ago). 
Here are his comments:
How do you see Mom and Dad’s situation impacting Lisa and Micah respectively?
Since the Parkinson’s has been around so long, I think Lisa has accepted the presence of the disease.  Obviously she would love nothing more than for the disease to just go away, but that is not likely to happen.  It is very hard for her to see her Mom in such condition when in the past she was so vibrant and quick witted.  She is mostly concerned about the impact on Pete and the difficulties of full time care giving.  Pete could be adversely affected physically when picking up MaryAnn after falls.  He could also be affected mentally from having to give constant care, 24hrs a day without much personal time.
What do you see as your role in the situation?
I feel I need to be as supportive as possible to Lisa…and MaryAnn and Pete.  Hopefully our time in Topeka was a good help in caring for MaryAnn.  I think it certainly was good for me, Lisa and the girls to have all the extra interaction with MaryAnn and Pete that being close by allowed.  Abigail and Ashlyn were able to create a closer bond to their grandparents and hopefully bring a little extra cheer to household too.  It has always been hard for me to communicate very well with MaryAnn given the disease.  I never did know her before it took over so much.  I like to think that our sense of humor would overlap a fair amount.  Both of you are most welcome to move to Louisville at some point if you are so inclined.  We could be of more tangible support that way.  I think my role is mostly to be a supportive son-in-law to Pete and MaryAnn.  Be there for support in times of critical need…mostly in sharing Lisa’s warmth, energy and time with you.
 
What would you tell others in your position?
Educate yourself about the symptoms of the disease and the side affects of the medications.  This will help in understanding the behaviors of the sufferer and their needs.  Be as helpful and supportive as you can in those times when a crisis comes up.  Also recognize the burdens of the caregivers and the impact it can have on them.
 
How do you see the situation impacting the Grandchildren?
Like me, Abigail and Ashlyn do not know Grandma Tremain any other way than with Parkinson’s.  Yet I can’t help but think that interaction between MaryAnn and the kids is very valuable to them both.  I really think the girls see MaryAnn as “Grandma Tremain”, not Grandma who has a bad disease.  I don’t think they differentiate her in that way.  Its wonderful to see them accept MaryAnn as she is.
As is obvious when reading the comments above, not only do we have remarkable children but they have married remarkable spouses.  Our Daughter-in-Law Rebecca has impeccable integrity and common sense.  She is not only a support to our Son Micah but a caring presence to Mary Ann and me, a joy to be around.  She, Micah and our oldest Granddaughter, Chloe, live a little over an hour away from us.  Both Rebecca and Denis also add something in very short supply in our family — height.   For that we are very grateful. 
When Chronic illness enters a household, everyone is affected, spouse, children, grandchildren, siblings, parents, friends, all those connected to the one with the disease.  In a sense, everyone has the disease.  What is needed is openness, honesty, and support for one another as each is impacted in some way.  We celebrate that to a person, those who are family and friend to us have stuck with us and done whatever they could to help us and one another negotiate the journey we are on. 
Stay tuned.  A post in the near future will contain the responses of our Grandchildren.  From the mouths of babes!
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.

I asked our two adult children to respond to some suggested questions to provide their perspective on our situation and to share their feelings about the journey they have been on with us.  Two evenings ago I posted our Son, Micah’s response. 

Tonight’s post includes the response of our daughter, Lisa.  Lisa just turned 40 years old on the Fourth of July.  I remember holding her as the first steps were taken on the moon.  I realized she would never know a time before what seemed to be an event that would change the world for all time.  As it turned out, the change was not so dramatic.  By now I thought there might be regular shuttles to one of the colonies on the moon. 

Lisa is married to Denis (yes, with one “n”).  Their two daughters are Abigail (turning 7 this November) and Ashlyn (turning 5 in August).  About three and a half years ago, Denis suggested to Lisa that they pull up stakes and move from ten hours away to the town in which we live so that they could help us out for the last two years before I could retire.  They did just that.  They have been back in Kentucky for about a year now.  Needless to say, we miss them very much. 

Here is what Lisa wrote:

I had a dream a few nights ago that my Dad was preaching back at our old church in Kansas City. Mom and I were sitting together and some sort of disruption happened outside the sanctuary; I can’t remember exactly what it was. Mom and I rushed to the scene and worked together to solve the crisis. What sticks with me about the dream is that it was Mom before Parkinsons. She and I were together taking care of things, moving quickly, taking charge, making decisions.

It’s been a long time since I have thought about the Mom that could have been. I’ll admit to feeling some envy when my friends talk about their moms who are babysitting grandkids or lunching & shopping together. I do wish we had been able to have those experiences. Even more than that, I wish that my daughters had the opportunity to know the real person inside. Her fun personality and sharp wit are mostly obscured for them, and even for my husband, who has known her 10 years now. That being said, I still have glimpses of her true self from time to time. One visit last fall, Mom & I enjoyed some cinnamon rolls for breakfast. She was pleasant but relatively quiet. After the meal, she needed a bathroom stop. When she reached for the toilet paper, we noticed that I had forgotten to wipe the sticky cinnamon roll from her fingers. We decided it gave a whole new meaning to the phrase “cinnamon buns.” I haven’t laughed that hard in a long time.

 We moved to live near Mom & Dad for 2 years and it was a great experience. It was tiring and sometimes heartbreaking, but also very fulfilling. Being able to help Mom & Dad on a daily basis was invaluable to me because I really felt we were making a significant positive impact in their lives. I liked being available day to day, and in case of emergencies, especially those middle of the night kinds of emergencies. When I could tell Dad was exhausted, I liked being able to come and take care of Mom overnight, so he could get a good night’s sleep; or stay for a few days so he could take a respite trip.

I am glad Dad has been able to retire and be a full-time caregiver. I had a hard time imagining how they would be able to make that work, mostly due to Dad’s need to transition from such a busy work life, to being at home all the time. Although this is nothing like the retirement years I would have wished for them, I think it’s the best it can be given the circumstances. Dad is the best caregiver and advocate for Mom that she could possibly have.

As I read this response from Lisa, I especially appreciated the flashback to Mary Ann’s wicked sense of humor.  I suppose for all of us, losing the person who was without a doubt the center of our household has been the hardest part.  Mary Ann has always been a force to be reckoned with — not in an overbearing way, just by virtue of her personality and her presence.   If it has ever been true about anyone, it is true about Mary Ann — they broke the mold after she was made. 

As I said in the post two evenings ago, we have two remarkable children. Lisa has been a friend to her Mom even through the teen years.  Lisa’s laugh is contagious and Mary Ann could always manage to say or so something that set it off.  She has been a great support to me with her wisdom and her counsel and her concern.

Micah is the sparkle in his Mother’s eyes.  As I mentioned two nights ago, she lights up when he is around.  Micah is the one who was at the hospital when I finally broke down after a week of sleepless nights.  He just held me as I sobbed.  When he was with us during conversations with the doctors, his questions were insightful and probing, getting from the doctors just the information we needed. 

Yes, we have ended up with far better children than we deserved.  By the way, that is my observation only.  Whenever she heard me say that, Mary Ann would claim full responsibility for how well they came out. 

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A while ago, I asked our Children, their Spouses and our Grandchildren if they would be willing to write something from their perspective on our situation.  What will come in this and other posts in the near future will be their responses to some questions I proposed.  Our Son, Micah will turn thirty-seven years old in a few weeks.  He is married to Rebecca.  Their daughter, more importantl, our Granddaughter, Chloe, is entering the Sixth Grade this fall.  Here are his responses.

How does it feel from your perspective to see your Mom and Dad’s situation?
I think it’s something that sneaks up on you. Since the changes have happened over such a long period, it’s only in the lowest dips of the rollercoaster when it seems most obvious how difficult things can be for you both. As I’ve read your blog and remembered with you the struggles of the past years, I realize how much has changed. But the passing of time seems to mask some of the changes and challenges, constantly (but subtly) shifting what “normal” is for you both. The hardest part for me is my fading memory of mother as an active, vibrant part of my life. A child’s view of their parents comes from that selfish “how does it affect me” perspective, so when I look back and try to remember the person who taught me how to throw, the person with whom I would cook – and joke! – I yearn to remember more of it, and mourn the loss of those disappearing memories. It’s selfish, to be sure, but I (like any child) want to continue to actively share my life, family, and experiences with both my parents, and I hate that the Parkinson’s and Dementia steals many of these opportunities away.

Stepping back a bit, when I see you both grow older, I worry for both your safety and your quality of life. Caregiving can’t be what either of you planned in your retirement dreams. I wish a wider world for both of you, knowing that your circumstances make for a very small world. I’m glad that you continually push the boundaries of travel and mobility, because they are luxuries you won’t always have. I hope you continue to push those boundaries even as they slowly constrict. You both choose to experience life – not just live it – in spite of your challanges. And while I hope for all these things, I worry about the consequences of living on the edge of safety and security. Having rushed out to Arizona when we thought mom was not going to make it, I can still say that I’m glad you both continue to be as active as you can. And I live in terror of the possibility of dad being unable to care for mom, and what the consequences would be for everyone – including mom. And I hope that there are enough people coming by the house often enough that if something bad ever happened, it wouldn’t be long before help was there (that’s kinda morbid, huh?).

How do you see your unique role in relating to it?
I work hard to treat mom as I always have, though I know it has become harder and harder to do so. The occasional caregiving is difficult for me since there is a palpable discomfort for mom and me when things like bathroom duty come up. I don’t know what it’s like for Lisa, but I know that mom apologizes any time I need to help her with personal issues. I don’t mind doing it at all, except for the emotional discomfort it causes. We soldier through it, and it’s a small price to pay for the quality time we get to spend together when I stay with her. So I guess I see my role as trying to treat her the same way I always have, in an effort to retain some normalcy in our relationship. Now that I write it out that way, it sounds like blantant denial. My intention is to maintain the lightheartedness we’ve always shared, in spite of the obviousness of her daily challenges. Asking her how she’s feeling, and cautiously assisting her and anticipating her needs feels like I’m giving more attention to the Parkinson’s than to her. While I know the two are inseparable, I guess there’s still a part of me that needs to treat mom like mom first, and like a Parkinson’s sufferer second. But I can also tell you that after re-reading this paragraph, it sure sounds like I have some issues to deal with 🙂
 

What would you tell other adult children whose parents are dealing with chronic illness?
Judging by my previous answer, I don’t know what I’m one to be giving any advice!

How do you see the situation impacting the Grandchildren?
I believe that the grandchildren are resilient and accepting – they don’t know grandma any other way than she has been. Chloe once drew a picture of the family, and it included grandma in a wheelchair. I was a bit taken back by it at first, but quickly realized that that was the norm for Chloe – it’s not good or bad, that’s just how grandma is to her. I wish all the girls could know her for her wry wit, her quilting, and her cooking. But I’m so glad that Lisa’s girls got the chance to be around her for the time they were in town with you both. They may not remember it well when they are older, but they still will have had the time.

After I read Micah’s response above, I responded to him that the way he relates to Mary Ann is exactly the way he should.  I see her eyes light up when he comes over to talk with her and kid with her.  He relates to Mary Ann, the sharp, engaging, smart-aleck Mom he has grown up with, not to the Parkinson’s.  It brings out the best in her. 
As any who read this blog today and in the days to come will see, we have remarkable Children, Children-in-law, and Grandchildren.  They turned out better than we deserve.  We are just very grateful we get to have them as our family. 

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