November 12, 2009

Sleep! Sweet Sleep! Plus Physical Demands

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , |
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Whatever happens today, last night we both got a good quality, long night’s sleep.  Mary Ann is still sleeping.  It is a little after 9:30am.  Because of Veteran’s Day yesterday, Bath Aide Zandra did not come.  She has arranged to come later this morning, so Mary Ann will need to be up soon.

Later: Mary Ann made it up in time to get her meds taken before Zandra arrived. She has had another loose stool (sorry!) which has been happening for many days now.  It raises the question as to whether or not there might be some sort of bug causing some of her problems.  We will wait it out.  So far it is manageable.  i just want to be sure Mary Ann doesn’t get dehydrated.  Checking urine color (sorry again!) should provide evidence one way or the other on that.  We will not involve doctors and hospitals unless there is something clearly demanding that involvement.  If the weight loss continues, I will probably phone the GP’s office for a recommendation of a supplement.  Actually, I will also check with the LBD Spouse Caregivers online group.  They have far more experience with what works than any medical professional.  It seems clear that Mary Ann is just not getting enough calories in to maintain her weight.  Oh how I wish I could painlessly transfer about twenty pounds from me to her. I tried to get her to eat a some spectacularly sweet and tasty and moist cherry (homegrown and canned) and nut coffee cake that Maureen brought yesterday.  She just wouldn’t eat anything.  I, of course, had a huge piece.

After the intestinal activity, Mary Ann decided to lie down again.  She has seemed very tired since getting up this morning.

Gratefully, whatever strain lifting Mary Ann from the floor the other night seems to have been healing on its own.  The physical demands on Caregivers are often substantial and constant.  When I read the online posts of other caregiving spouses, I wonder how on earth they can do it.  Most of them are women, many of them my age or older.  Some of them have husbands who weigh two or three hundred pounds (one is a former heavy weight boxer).  I have no idea how they deal with the demands.  Many have a Hoyer lift to use when necessary.  We have one also, but have needed to use it only a couple of time in the years we have had it.

The physical demands of course include helping Mary Ann up from the floor when she falls.  Our system is not necessarily recommended by physical therapists, but has worked for us for many years.  When she has fallen, I work at sliding her (by pulling on her legs) into an open space where she can lie on her back with her feet toward me and her head away from me.  I put my feet together in front of hers so that they won’t slide, she reaches up and I take hold of her hands.  I rock back, using my weight as a counter balance so that my back is not involved in the process of lifting.

The risks in that approach are mostly to Mary Ann’s arms and shoulders.  Again, since she is not heavy and we have been doing it for so many years, her arms and shoulders seem strong enough to manage.  So far there have been no noticeable side effects to that process.

One of the movements that has created problems for me in the past, is that which is required to turn Mary Ann in bed and move her to the center of the bed so that she doesn’t risk falling off the side of the bed (been there!).  We have single, adjustable beds.  For many years she has been able to climb on all fours on to the bed and flop down one way or another.  She has come very close to flopping right off the edge of the bed on to the floor.  Now, most of the time she simply cannot negotiate that movement.  When she tries, she usually gets stuck on all fours on the bed or with one foot still on the floor, unable to move any farther in the process.

Now, most often she sits on the side of the bed, and if she wants to lie on her left side, facing the television, I cradle her and twist her in a sort of dramatic swinging motion until she is facing the appropriate direction.  Then I lean forward, slide my arms under her and pull her toward me to center her on the bed.  That is the motion that has caused back pain in the past.  Now, I squat down and let my body weight (lot’s more than her body weight) pull her to the center of the bed.

If she wants to lie on her right side, the side of choice for her, again, she sits on the side of the bed.  I let her head down to the pillow and reach with my right hand to lift her feet on to the bed.  Then I travel to the other side of the bed to pull her to the center.  Since the size of the bedroom does not allow much space between the two beds, I often can’t seem to get accomplished the motion using my body weight.  Most often, I slide my arms under and just pull her to the center with my arm muscles, a movement not unlike doing a curl.  Again, that keeps from involving my back in the process.

Now with that image in mind, imagine the nights she is up every few minutes.  One of those two actions of moving her to the center of the bed happens every time she gets up, even just to sit on the side of the bed.  When I watch her on the monitor, if she begins to move at all, I head in to see what she needs.  Sometimes she just needs to be turned from one side to the other, or the covers have gotten twisted out of place.

When we travel, the large beds pretty much preclude my reaching under her to move her.  I can do some manipulating to help position her, but most of the options are simply won’t work.  If I try to move her much, it puts my back at risk.  It won’t help her if I am debilitated.

At the moment, one of the activities that is the most risky for both of us, is the trip to the commode.  I pull her up to a sitting position on the side of the bed and pull the commode close enough so that it only takes a transfer with a few side steps to get her into position, pull down her Pj’s and disposable and get her seated on the commode.  That part is pretty straight forward.

The risky part comes when she is finished.  I pull her up and hold her so that she can use the TP I have handed her.  Most often, she just cannot balance well enough to stand on her own.  I hold her with one arm, feeling her weight against it, knowing that if I let go she would fall back down on to the commode and over the back of it into the wall (does that description ring of experience?).  While holding her with one arm, I have to reach down first to pull up the disposable (we call it a pad), which of course binds since I can only pull from one side, the other hand attached to the arm holding her up.  It is hard for her to remember and then to have the dexterity to move her knees apart enough to get the pad through and pulled up.

Then come the pajama bottoms next.  They have always gathered at her ankles.  Reaching down all the way to the floor with one hand while holding her with the other high enough to be above her center of gravity so that I can keep her from falling challenges my flexibility and strength.  When I think of it, I remove the PJ bottoms so that I can put them on her in a separate action while she is safely sitting on the side of the bed.

The commode trips come very often since one of the problems of a compromised Parasympathetic Autonomic Nervous System is the need to urinate frequently.  The last time Daughter Lisa stayed with Mary Ann over a couple of nights, she shared with me that she was pretty concerned about the risks associated with the night time commode trips.  Both of our children are very concerned about the precarious nature of our situation.  They recognize that it would not take much to mess up our system.  If I am not able to handle Mary Ann, either due to her physical condition or mine, a whole new set of challenges would emerge.  None of us wants even to think about it, although it is hard not to do so.

One other activity has become more challenging since the hospital.  There are more times when she can’t open her eyes, and/or is almost too weak to walk making the short trip from the door to the car pretty difficult.  If this continues, I will set up the aluminum ramps and roll her down the two steps to the door of the car in her transfer chair.  Oddly, steps are far less problem to handle than walking on a level floor to those with Parkinson’s.  Steps usually are her best thing.

While I need cardio-vascular conditioning exercises, I think I am getting plenty of upper body strengthening in this caregiving role.

It is still only mid-day, but this has gotten far too long — as have most of the recent posts.  She is still sleeping.  I hope to get her in the car and to the grocery store this afternoon.  We will see.

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

 

September 21, 2009

We Have Food!!!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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Maybe that is a little dramatic — three exclamation points — but we do now have a number of new items of food in the freezer.  While our Daughter, Lisa, stayed with Mary Ann for the three days I retreated to Oklahoma, she made lots of things that are within my cooking comfort zone and put them in the freezer.  She wrote the preparation directions on pieces of paper and put them with each item.  Gratefully, they are mostly the kind of directions that say, thaw, cook in oven for an hour at 350 degrees.  I can handle that!

Pete and Carla stopped by with a meal this noon.  They are very thoughtful folks.  I was sorry to miss seeing them since I was at the lake while Volunteer Jan spent time with Mary Ann. Jan and Mary Ann seem to enjoy each other’s company.  This afternoon Elaine came by, picked up Mary Ann and took her to the Quilt Show.  Mary Ann loved making quilts for a number of years.  She especially liked piecing the tops together.  She spent two years hand stitching the quilting on her first quilt, a queen sized sampler quilt.  After that, she took them to be machine quilted once she got the tops pieced. It has been hard for Mary Ann to accept the loss of the ability to make quilts.  After such a busy day, Mary Ann crashed late this afternoon, so the evening service at church was not an option for us.

This morning’s time at the lake provided a couple of interesting treats in observing wildlife.  The first is a repeat of an encounter I had a few weeks ago.  Again today there were two Ospreys sailing overhead.  One came right over the car, so I got a very good look at him through the binoculars.

I made my usual visit to the Delaware Marsh, which now has very little visible water in it.  The area that I walk has one large puddle left.  As I approached it from a distance, walking a on tall ridge alongside the marsh, the water in the puddle seemed to be almost boiling with activity.  When I focused the binoculars on the mud sided puddle, it was boiling, not from heat but from the movement of snakes, maybe a dozen of them. They were twisting and turning rapidly, in constant motion.

After watching a while, it became apparent what was going on.  The water had dried up in most of the area, leaving that large puddle as the last, very confined, place where the frogs and fish were trapped.  While I am not absolutely sure about the fish, I could see the frogs jumping out of the water, flying into the air, with snakes in speedy pursuit.

Some of the snakes were pretty large, at least two or three feet long — some probably longer.  The snakes began slithering off in the mud and marsh grass as I approached.  One large snake and one medium sized snake remained in the mud at the edge of the water even though I was not far away.  As far as I can tell, looking online, they were white bellied or yellow bellied water snakes.  They did not have the telltale triangular head of a venomous snake.  While I am not particularly fearful of snakes, I kept my distance.  The binoculars provided as good a look as I would get even if I tried moving closer.  I am sure they would have moved away quickly if I had climbed down the ridge into the marsh.  My visit to that puddle probably provided a stay of execution for some frogs and fish.  I doubt that the stay will be for long.

Uh-oh.  There seem to be signs of restlessness being revealed by the video monitor.  I hope Mary Ann sleeps well tonight since tomorrow includes two different Sonograms, heart and carotid artery.  We always hope for no change in the condition of both.  Blocked heart arteries, some weakened heart muscle and a dented and rough surface on a large lesion on one side of her carotid artery keep us aware of the harsh realities of her condition.

Each day is a gift!

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

 

September 16, 2009

Caregiver’s Life Preservers, Vol. 4

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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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.

 

August 5, 2009

Caregiver Walking the Line

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , |
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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.

 

July 28, 2009

Caregiver/Spouse’s Grandchildren Respond

Posted by PeterT under Family, Help from Others, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , |
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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.

 

July 21, 2009

Caregiver/Spouse’s Son-in-Law Responds

Posted by PeterT under Family, Help from Others, Meaningful Caregiving | Tags: , , , , , , , , , , , , , , , , |
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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.
 

July 18, 2009

Caregiver and Spouse’s Son Responds

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , , , |
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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. 
 

June 15, 2009

Problems Sometimes Give Good Gifts!

Posted by PeterT under Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , , |
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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.

 

March 24, 2009

Caregivers: What about the Kids?

Posted by PeterT under Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , |
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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.

 

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