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. 

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 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. 

When Mary Ann was diagnosed with Parkinson’s twenty-two years ago, our Daughter Lisa was a Senior in high school and our Son Micah was in the Eighth Grade.  They were, of course, both living at home.  I had gone ahead to a new job in Oklahoma City, many hours away.  The family joined me there at the end of the school year.

Since the kids were at home, they knew pretty much from the beginning the name of the Disease with which their Mom had been diagnosed.  For those who are diagnosed after the children are out of the house and living elsewhere, the question is, when should they be told.

I am convinced that more information is better than less information.  Hiding the truth is unsettling to the children and unfair to them.  They are a part of the family.  They need to hear from Mom or Dad, whomever has the disease, what it is and what it means.  Adult children, even young adult children could easily feel betrayed if they found out from someone else through a slip of the tongue what they should have heard from their parents.

Mary Ann chose not to tell family and friends for the first five years after diagnosis.  She did not want to be treated differently on account of the Parkinson’s.  I would have preferred telling family and friends much sooner, but it was her call.  She had the right to decide who should know what about her diagnosis, and when they should know it.

My bias is toward laying out the basic information so that there is no guessing or wondering.  The disease seems to have more power when it is secret than it does when it is out in the open.  For people who care about you to move through the process of coming to accept it, they need to know about it.

When finally the news was out, we could begin to deal openly with the various challenges that came with it.   People were anxious to help to whatever degree they could. The Parkinson’s just became a part of the landscape of our lives.

Caregivers and spouses need to decide as each new dip in the roller coaster comes, how much to tell whom and when to tell them.  I have heard many say, “I didn’t want to worry the kids, so I didn’t tell them what was going on.”  The result of that approach is to increase the concern of the kids since they can’t count on hearing the truth about what is going on.  They wonder what they are not being told.  They worry about how things are really going.

It is not, of course, as easy as deciding to tell them everything all the time.  Since adult children have full lives with worries of their own, they can be overloaded with too much information, drawing them into every bump in the road in their parents’ struggle.

I guess the goal is to find the Golden Mean, the balance that allows them to be confident that they will hear when there is a significant change, but not be drawn into the day to day ups and downs.

The same is so with friends and family.  They are interested in how things are going, but they do not need to be invited to join you on your roller coaster ride.  They have one of their own.

One mistake I have made in the past as I have communicated changes in our situation, is to share a noticeable dip in the roller coaster we are on, but neglect to give a quick follow-up when things are going better.  Especially those with whom we share only occasionally and then only when there is a dramatic change can be left thinking we are at a low point in our struggle when in fact we have come out of it to a much better place.

Gratefully, at least for computer users, there are free websites that can be used to post updates.  That way people who are interested in finding out what is going on can check the site to see how things are going.  Those sites can be used to make sure that people have accurate information on your situation, rather than resorting to the “I heard that…” word of mouth that may confuse the facts.  A couple of sites that come to mind are http://www.caringbridge.org and http://www.carepages.com.

As for the kids, they need to be confident that they will hear about any major changes without being drawn into the day to day ups and downs.  That provides them with a sense of security that allows them to concentrate on their own lives.  We raised them to go out on their own and make lives for themselves.

Friends and family will vary in how much they want to know, but they cannot be a support when troubled times come if they don’t know about the trouble.  Let them know when the troubled times have relented so that they can celebrate with you.

The people in your life care how things are going.  They want to know, just remember that they have lives of their own.

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.

Her name is Kim.  Everyone should have the chance to know someone like Kim some time in their lives.  Kim is a vivacious mother of two school-aged boys.  The boys are both gifted, caring, thoughtful beyond their years, the sort any parents would be proud to call their own.  She is wife to a good man who cares deeply for her.  I suppose that description suggests that Kim has a picture perfect life.  Oddly, she would probably tell you that is precisely the life she has, picture perfect. 

Kim’s life took a dramatic turn only months ago.  An unexplained pain that turned out to be unrelated to the Cancer led to tests which led ultimately to a diagnosis of Breast Cancer.   As you might guess, that summary hardly contains all the dynamics of the journey from pain to diagnosis. 

Because of family history, Cancer in the lives of Kim’s Mother and Grandmother, Kim realized that she needed an aggressive treatment response to her diagnosis.  She has had the double Mastectomy and will have a hysterectomy.   The good news is that the surgery has gone well, and chemotherapy is not necessary since it would have minimal effect on the statistical risk of recurrence. 

The word Cancer has the power to bring the strongest to their knees.  At first mention of the word, thoughts move immediately to the worst possible outcome.  From the very first word of the diagnosis, Kim has not broken stride as she moved through each step into her and her family’s new perspective on life. 

In almost forty years of ministry, I have watched people travel the path of dealing with a life threatening diagnosis.  No matter how bravely the people receiving the diagnosis respond, those who love them are shaken to the core.  It is cliche to say it, but it is true.  It is often harder for those who love someone going through a devastating illness and the resulting pain, than it is for the person with the pain. 

There is a sense of helplessness for those who watch and care deeply for someone with a life threatening disease.  Those with the disease sometimes come to acceptance before those who love them.  It happened that way so often for those to whom I ministered over the years, that one of the first conversations we had when I visited was the one about just how much they would be called on to help others come to terms with what was happening to them 

Back to Kim.  Kim has a deep faith that provides her with a sense of security and the freedom to face what is happening each step along the way.  As a result, she can talk and reason and process each option without panic or pretense.  She has talked openly with the boys who share her faith.  Nothing is off the table in terms of talking about the facts of her situation and what each in the family is going through.  Kim, her husband and the boys have all through these past few months expanded their capacity to understand life in all its depth and breadth. 

While Kim appreciates fully what has happened in their lives, she is profoundly grateful for the good gifts this problem has given her and her family.  Of all things she feels privileged.  If I remember our conversation correctly, that is precisely the word she used — privileged.   

I can testify, that not all those who have gone through what Kim is going through (or some other problem like it) have felt privileged.  I have watched some become bitter, fall into despair, lash out at God and anyone else within reach, feel so sorry for themselves that the world shrinks to become solely about them and their struggles. 

Kim is not one of them.  In what could have destroyed her and her family she has found gifts of deep and lasting value.   Faith has revealed itself more powerfully, the quality of relationships grown.  She has become for others a bright beacon of reflected light — reflected because the brightness comes from the unconditional love of a God whom she knows well, revealed in the person of Jesus Christ.  While those who read this blog need not share the faith that is the source of strength for Kim and for me, it is nonetheless our understanding of truth.  We cannot describe our experience without  reference to that faith.  If Kim were to agree that her life is picture perfect, it would not be because there is no pain, no fear, no struggling, but because there is a beauty that has become more visible than ever, the beauty of life with meaning, life well-lived, relationships that are real and deep, and hope that cannot be snuffed out. 

Almost five years ago, I did the funeral for a man named Tom.  Tom had a pain in his leg.  Two years later he died of the Cancer that had spread beyond the reach of the treatments available.  While it was hard for his wife to hear him say it, not long before he died he said that the last two years had been the most meaningful time in his life.  He found gifts that opened him to life more fully than ever, life with his wife and children.  Tom touched hundreds of lives as he traveled those last two years.  Tom drew strength from the same faith.

I have written before in the post on this blog some of the gifts that have been given to us in these twenty-two years with Parkinson’s traveling with us.  I would not presume to speak for Mary Ann on this matter.  I have seen pe0ple cluster around and come to know her and respect her and love her as friend — people who came at first to help her, and were ultimately helped by being with her.  She has revealed to all who know her and know of her, great courage and strength and endurance as she has taken so many hits and gotten up again after each.

I have learned more about what it means to love than I suspect I ever would have without the struggles we have encountered.  I cannot know what life would have been without the struggles, but I am grateful for what I have been taught by them.  Our Children and their spouses have revealed to us great strength of character, wisdom, love drawn out by the struggles they have helped us through.  Mary Ann and I have the joy of seeing three Granddaughters reveal a deep love and concern and caring that has been given the chance to be expressed in age appropriate ways. 

Kim would not have chosen the Cancer.   Tom would not have chosen to leave so soon.  Neither Mary Ann nor I would have chosen the Parkinson’s, but all of us have been given gifts of a value too great to be measured.  We have been privileged to find a quality, a meaning in life that cannot be learned from a book or a lecture or a DVD or a blog. 

Problems sometimes give good gifts!  For those of you who are midstream in the struggles, look for the gifts, open them, play with them.  They are more valuable than can be measured.

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 Mary Ann was diagnosed with Parkinson’s Disease, our daughter was a Senior in High School and our Son was in the Eighth Grade at a school in which that was the last year.  I had gone on ahead in February to begin a new job in a city about a six hour drive away.  Mary Ann and the kids stayed at home to finish the school year while I lived in the new city without them.

It was a phone call.  “The doctor says that I have Parkinson’s Disease.”  In that moment  our lives ended as they had been and a new life began.  It has been a time of discovery for Lisa and Micah.  All of us needed to incorporate this new reality into our lives in different ways, as bits and pieces of understanding of its impact revealed themselves to each of us.  Our experiences have been completely different.  I could no more describe the feelings that Lisa and Micah have had than I could Mary Ann’s feelings.  They alone know the journey they have been on.  I know only what I have seen and heard when they were still at home, and what I have seen and heard of them in the years from then until now.  They are thirty-six and thirty-nine now – both married and along with very well-chosen spouses, raising our granddaughters. 

For you whose family has come to know the presence of chronic illness, make no assumptions about how that presence is impacting anyone else in your family, especially the kids.  It is tempting to project our adult awareness of all the implications of the disease on to our children.   It is tempting to try to insulate them from what we know of the truth.  It is tempting to lean on them and use them for support that they are neither ready nor able to give.  It is tempting to loosen boundaries on their behavior to compensate for the pain their parent’s chronic illness brings into their lives.  It is tempting to allow the chronic illness to draw attention away from them and their needs as they grow. 

Let’s just admit the simple truth.  Parkinson’s joined our family.  We didn’t invite it in.  We had nothing to say about it.  It became part of the family.  Two of the choices we had were to pretend it hadn’t moved in, or make it the center of our world.  I suppose we did some of both, each of us in different ratios of pretense and dominance.  One thing we did (I hope this is the way the kids remember it) is to just deal with whatever came as it came.  One side note is that as her Mom’s illness progressed, Lisa’s career choice of nursing home administration emerged.  She has since chosen to move to a very fulfilling job of the full-time parenting of her two young children. 

The Parkinson’s did impact the kids lives.  Again, they alone know how it affected them.  We tried to be honest about what we knew.  We tried to be rational in making choices about how to live most effectively in light of the Parkinson’s presence in our household.  We wanted our children to see that rational behavior helps in the long run.  We certainly did not spend a lot of time wringing our hands and feeling sorry for ourselves as if our lives had been stolen from us. 

Our children have come to be exactly what any reasonable parent could hope for them to be.  They are self-sufficient but able to be vulnerable, to care about others.  They are intelligent and mature.  Their advice is trustworthy.  They are of impeccable character.  They make friends easily and are true to them.  Others are better off for knowing them and will admit it.  While I understand that Mary Ann and I are biased in our assessment of them, I would bet money, real money, that others who have no such bias and who know them would say the same.

How did the Parkinson’s affect who they have become?  I can’t know this, but I think it has added depth of understanding, wisdom, compassion and a concern for others to a degree that might have come at least more slowly otherwise.  Each of them has found a life’s partner who matches their integrity, compassion, wisdom and concern for others. 

Those of us who deal with chronic illness in our families can feel sorry for the burden it places on our children.  I happen to have worked with Youth for eighteen of my forty years at my job.  While I cannot claim to have conducted a properly constructed study of Youth trends, I can say that those I got to know well, those who had the most, who were given the most, who had the easiest road, also had the most trouble finding their way to happy, meaningful, and fulfilling lives. 

What some might conclude to be an obstacle to a healthy childhood and a joyful life, I understand to have brought health and the capacity to experience deep and lasting joy that cannot easily be snuffed out by problems.

I have concrete evidence of the strength of character that has been shaped in our children by Mary Ann’s Parkinson’s.  Two years before I was able to seriously consider retiring to be a full-time Care Partner for Mary Ann, our Son-in-Law said to our daughter, Lisa, “why don’t we move to your Mom and Dad’s town to help them out for a couple of years until your Dad can retire?”  They lived in a city ten hours from here.  They had a two year old and a four year old.  There were no job guarantees here.  They just did it.    I have no idea how we would have done it without them.

Our Son and Daughter-in-Law moved from three hours away to one hour away.  They have never said what role, if any, our situation played in that decision.  But here they are, close by and ready to do anything within their power to help us.  Micah has come and stayed the night with his Mom.  He has done things no Son should be asked to do for his Mother.  He has done them without hesitation or complaint. 

Our love for our children, our purpose as parents to free them to live full and meaningful lives, shaping their own destiny, makes it hard to accept choices they have made to accommodate our needs.  They have taught us that part of who they are, who they have chosen to be, what they want their children to see in them, is their willingness to choose compassion and concern — actions, not just words. 

What about the kids?  The Parkinson’s, a chronic illness, has brought to them more than it has taken from them.   I say that so boldly, not because they have said it to me, but because their lives testify to it. 

My heart aches for so many who have not had the experience we have had, whose children and/or stepchildren have brought them pain beyond description.  How do you manage to survive in spite of their unwillingness to help and for some their willigness to hurt you?  How have your children dealt with the presence of chronic illness in your family?  How have they been hurt; how have they grown?

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.  Comments are appreciated.