July 2009

Below is a link that may need to be cut and pasted into your browser to open.  If you are caring for a Loved One with dementia of any sort, I suspect you will find it both poignant and painful — at least I did.


One of those on the Lewy Body Dementia spouse Caregivers’ online group reported that her Loved One asked their adult daughter,  “I don’t know what’s wrong with me or what is going on, will I ever get better?”  She wondered what she could say to him. 

Another of the members of the group who is caring for his wife and has the gifts of perception and writing replied to that post.  I asked his permission to share his words in this post before I included them here.   This was his reply:

“[My wife] asked the same question several years ago, with the same answer and result…
…Their entire world around them is shattering, but somehow, they see themselves as a calm center in a whirlwind… that is why it is so hard for them to realize it is them that is having the problem and not the world around them…Think about it, what would be your reaction if things you saw, people told you  were not there…people tell you that you are doing things that you don’t remember…people and places from the past appear again..even though you “know” that they cannot be???, but there they are…you just want to get away from it all…people tell you what to do, when to do it and want you to be the same as before, but you can hardly see why…..Oh, I just feel so bad for our LO’s..and I am gradually learning even after +6 yrs of this that …oh hell, I’m just as lost as ever..maybe just foolin’ myself that I know anything about anything…”
Of all people, this Caregiver Spouse, knows very much about caring lovingly and gently in the face of whatever comes.  All of us in the group have great respect for his wisdom and insight.
One of the members of the group struggles with what the doctor suggests is more about control than it is a symptom of the disease.  Her Loved One shuts his eyes sometimes when being urged to move along and cooperate.   Is that a passive-aggressive way to exercise some control in the situation, or is it just an involuntary act triggered by some misfiring neurons due to the disease?
I cannot even imagine that there is a Caregiver out there who has not wondered if some action or inaction, some slowing down of movement, some lack of verbal response is the result of the disease process or a product of a strong will refusing to cooperate. 
Mary Ann lives in a world in which, for the most part, I have control of what she does and doesn’t do and when she does it.  The style of our relationship has always been and continues to be one in which I work very hard at determining what she wants.  I think it is fair to say that I also try to find some way to fulfill that want if it is physically possible to do so.  Now, lest I sound wonderfully accommodating, I often either use far too many words along with some attitude to tell her why it isn’t possible, or I do it begrudgingly and then grump about it.  So much for sainthood!
When I watched that short video that is referenced at the beginning of this post, when I read the online post quoted above, I was reminded of just how difficult it is to be in Mary Ann’s position or that of any of our Loved Ones who have to depend on a  Caregiver.  Mary Ann is a strong-willed, independent person.  Actually, they can be pretty annoying character traits to a spouse.  Since I have at least as many annoying traits, we have actually done very well together.  She has always had a bit of a chip on her shoulder, not about to be pushed around by anyone.  Now she has to be pushed around in a wheel chair by me.  
What must it be like for her to have someone watching her every minute, jumping up and running to accompany her to wherever it is she is intending to go, suffering the indignity of having someone else clean her bottom?  What is it like to have someone telling her that she cannot use the knives and hot stove, that she cannot go down to the basement to look for something?  I can imagine that she just wants to scream, back off and give me some space.  “I’ll tell you if I think I need you.”
Then there is the frustration of not being able to follow every question asked of her and formulate an answer based on what she wants or needs.  The book “Life in the Balance” by Dr. Thomas Graboys was an eye-opener for me as he wrote how hard for him it was to try to interact verbally.  His Parkinson’s and the Dementia were impacting his ability to process information, form thoughts, put them into words in his mind and then, finally, actually get the words out loudly enough to be heard and understood.  By the time he accomplished all that, the conversations would have moved on to the next subject.
For those of us who are Caregivers, especially full time Caregivers, it is often very difficult to differentiate between willful resistance to our attempts to get cooperation and the progression of the disease process in our Loved One.  Whichever it is, putting their shoes on for a moment can help us gain some perspective and understanding.  Maybe by doing so we can lower our frustration level just a bit  and find some more patience as we say for the twenty-first time, “It’s a sparrow.”

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.

This morning I had a chance to go up to favorite spot I like to visit when there is a Sunday morning Volunteer.  (By the way, those who worry that we might not be getting to church, we attend the evening service on Sundays.)  I relish the chance for a little time to do some meditative reading, have some quiet time, and soak in the scenery and the wildlife, especially the birds.  I walked along the edge of a marsh below the dam, as I often do when I head up to the lake.  There are some Red-Winged Blackbirds that send out alarms and do fly-overs every time I take that path.  I am not sure what they think I am going to do, but they are determined that whatever it is, I don’t do it.

Something I wrote in my post yesterday came to mind as I spent the time away this morning.  Yesterday, I listed some of the things that I am not doing, options I have given up on for the moment, as we are living the life we have at the moment.  As I thought about that, I began to wonder if in the course of letting go of those options, I am also cutting back too much on what Mary Ann and I try to do to add interest to our lives.

While I have posted often with attitude, attitude that left the impression we will tackle anything, the truth is, I am often reluctant to push the envelop of our apparent limitations.

The disincentives that come with going out of the house to do much of anything seem pretty powerful.  I am afraid that sometimes I give those disincentives more power than they deserve.  It is so much easier to just go with the flow and do as little as possible that challenges us than it is to do the work of getting out.  I have to admit to just plain laziness.

Sometimes Mary Ann doesn’t want to tackle going out and needs for me to be more assertive.  Sometimes Mary Ann seems oblivious to the all the challenges and wants to go and do something, but I am the one that thinks of all the reasons not to do it. Sometimes it is just a matter of being tired because we have had a rough night, as in the night before last.

I don’t want Mary Ann to miss out on activities we are still able to do that may no longer be possible for us to do in the not too distant future.  At the same time, we both have to accept that one of the consequences of the Parkinon’s presence in our lives is that I need to do more of the work for both of us when we go out and participate in activities.  We cannot void those consequences and live the life we might have had if the Parkinson’s had not joined us.

Just as I have to accept what I need to do for Mary Ann to have a decent quality of life, Mary Ann has to accept that I have limited stamina and, frankly, have a lazy streak in me.  Not only do we need to live the life we have, not the one we wish we had, but we have to accept the spouse we have, not the one we would like him/her to be.   Otherwise we will always be disappointed with one another.

I won’t presume to speak for Mary Ann, but I have the spouse I want.  I accept and embrace all that comes with our life together.  In spite of the presence of the Parkinson’s in our lives, I want Mary Ann to have the best quality of life she can have.  I need to be careful not to be too cautious so that we do have the most fulfilling life we can given our circumstances.  At the same time, we need to accept each other’s limitations and imperfections, and not spend our time upset about what we are missing.  Our time is too precious to waste on regrets.

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.

For those following Mary Ann’s battle with fainting, while I had hope that the higher dose of the medicine that raises her blood pressure to reduce the problem was working, it hasn’t done so well yet.  The fainting continued yesterday.  Today, there was very little fainting.   We will take this a day at a time, and hope that the medicine begins to improve the quality of life.

Speaking of life, there have been a number of interactions on the Lewy Body Dementia spouses online group about quality of life issues.  There are so many brave souls there who have been caring for spouses much more challenging than Mary Ann.

In a post on that group’s site, I mentioned that I had re-framed my life so that I now understand my job to be the care of Mary Ann.  I don’t mean that in a way that makes any less of our being husband and wife.  It is a way for me to think about the tasks I do that gives them meaning and purpose, rather than seeing those tasks as an interference with my life.

There were a number of responses from folks that seemed to struggle with that idea.  They also commit themselves to caring for their Loved One.  Some do better with that care by thinking about the life they hope to lead after their Loved One is gone.  That provides hope that gets them through the tough time.

There were some who observed that whatever our reasons for doing what we are doing in caring for those with a Lewy Body Dementia, we will finally in the end, lose.  This journey will end badly.  In that group we all give one another permission to share our frustrations openly without judgment.  We need a place to do that, especially those who are in the most difficult times in the progression of the disease.

With that said, no matter how devastating and hopeless the situation is, it is, finally, the life we have.  What will or will not be so at some unknown future time, while it can provide some sort of light at the end of the tunnel, is not yet the life we are living.  It may or may not come to be so, but it is not so now.  We are left to try to figure out how to do the best we can with what is so right now.

My intention is to use every resource at our disposal, to fill our lives with meaning and satisfaction.  I am not willing to let meaningful living wait until some future time that may or may not come.

Whether it is a good or bad approach to life, there are lots of things I might have liked to do that I have let go of as options.  They may never be options.  I can feel sad about that, mad about that, fight the unfairness of it all.   In fact I may need to give myself permission to have all those feelings.  Finally, for me, there is neither the time nor the energy to give now to things that may or may not come.  The life we have right now needs our full attention.

Most of the things I am not now doing, singing, traveling, going on spiritual formation retreats, going on bird watching outings, doing part time ministry, volunteering, attending music events, all offer lots of possibilities for entertaining, satisfying experiences.  They are not, however, in and of themselves, the means for bringing fulfillment into my life.  The are the context in which meaning can be found.  Meaning is what we do with the life we have, how we view it, what we take from the context.  Obviously some contexts are harder to live through, than others, some have more pain included, some take more effort to find the meaning, but the life we are living is the one we have.  If there will be meaning and purpose, it needs to be found in that life, not the one we wish we had.

In the sense that it is a certainty that sooner or later death will come, yes, the journey will end badly.  In that same sense, it is true for all of us.  Eventually, we will die, so will those we love.  Today I preached at the funeral of a friend who died at the age of 93, after living a life filled with obstacles to overcome, a life filled with wonderful, poignant, entertaining stories.  Life does end in death.  That is just the way it is.

No matter what our circumstances that end is still awaiting.  Either we accept it and live meaningfully in spite of it, or we allow the fear of death to overwhelm us and steal the joy from the moment we are in.

We happen to have a perspective on life that allows that there is something more than meets the eye.  We understand there to be a Someone with whom we are in relationship, a Someone who provides love and security not bound by finite limis.

With that perspective, we can concentrate on living the life we have as it comes day by day without despair if is doesn’t happen to be the life we would have chosen.

We would not have chosen the life we have, but it is our life.  Each day brings with it challenges, joys, sorrows, relationship struggles and satisfactions, and the opportunity for finding meaning in what we are doing.  Again, it may not be the life we would have chosen, but it is the one we have, the one we will live to the fullest.

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 has been almost no fainting today, but at what price? 

It appears that the increase in Midodrine, a medication that raises the baseline blood pressure, has moved Mary Ann back over the threshold to the ability to stand up and walk without fainting due to a sudden drop in her blood pressure. 

Earlier today, our Cardiologist had Mary Ann come in to have a Holter Monitor hooked up to a number of leads that had been put on her.   If I understand correctly, the monitor is a miniature EKG recorder (Electrocardiogram).  The pattern of Mary Ann’s heart activity is recorded for that twenty-four hours.  We have a log on which we are to record the time of and describe any symptoms, in her case any fainting episodes (Syncope).  The Cardiologist will be looking for any irregularities in her heart beat during the symptoms.  Mary Ann has had this test two other times in the last three years.  If I remember correctly what the Doctor said, there were no irregularities those two times. 

One of the results of the timing of the increase in the dosage of the medicine is that it is working well enough to all but remove the episodes that are to be monitored. 

Here is why the title of this post is “Living on the Edge.”  I asked the Tech today if he would check Mary Ann’s blood pressure since the increased dosage of the Midodrine might be raising it too high.   In fact, I asked if he would first take it while she was lying down.  He did so.  It measured 240/110.  He had a look on his face that was mild shock.  I asked him if he would take it with her sitting up.  He did so.  It measured 248/118.  I was a little surprised since I thought it would lower some.  Then I asked him to take it after she had been standing for a few moments.  He did so.  It measured 140/70. 

The Tech was pretty surprised by the rapid change.  He said that in his twenty year career as an EMT and Clinic Tech, he had never seen anything like it before.  We feel so special!! 

Apparently, Mary Ann’s blood pressure needs to be kept far too high to keep it from going far too low.  When I measured two days ago it was 165/85 when she was sitting down, but when she stood up for a few moments, she fainted and was out cold for many minutes. 

The high blood pressure has weakened her heart and diminished her kidney function significantly.  Gratefully we have much more kidney capacity than we need, so she is not yet in serious danger because of the diminished kidney functioning.  As the Nephrologist said, she is likely to die with that problem, not from it. 

I guess for some, living on the edge makes life exciting.  I am here to say that Mary Ann and I would gladly accept a less exciting life!

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.

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