October 17, 2010

I couldn’t fix her.

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , |
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That is a reality that Caregiver’s often simply refuse to accept.  I think one of the things that allowed me to survive and resulted in a better life for Mary Ann was that I didn’t waste much time on things I couldn’t fix.  My goal was to try as hard as possible to figure out what we could actually do that would make a difference for good in whatever new symptom or return of old one or change in the effect of a medicine or loss of ability was impacting her. 

When a Caregiver does not accept the reality that he/she cannot fix his Loved One, the frustration becomes almost unbearable.  The illusion that the Caregiver can fix his/her Loved One is often worst in folks who seek to get their world under control, folks who tend to take charge, just the sort of folks you want among your close and trusted friends, since they are not shy about saying what they think.  In a group, they are the ones that organize activities, the ones who actually get the work done.  The trouble with that view of the world is that it is an illusion.  None of us controls the world around us, really.  We might be able to keep hold of a small corner of it for a while, but sooner or later (usually sooner) something or someone messes up our orderly world. 

Another problem with the illusion of control is that Caregivers often become depressed themselves, feeling guilty that they are not doing enough.  If they were doing enough their Loved Ones would get better, they think, or more importantly, they feel.  There are frantic attempts to make things perfect for their Loved Ones so that they will be completely insulated from the consequences of the disease.  Sometimes Loved Ones, especially if they are in denial about their disease, feed into the expectations that their Caregivers should make their world work again.  I remember how often Mary Ann, when asked about meal preparation, would say without hesitation, “They won’t let me in the kitchen.”  I, her Caregiver, was “they.” 

The truth is, Caregivers don’t own responsibility for their Loved One’s sickness.  Caregivers cannot fix what they have no power to control.  Caregivers can be empathetic and caring and loving and sensitive to the needs of their Loved Ones.  Caregivers can be Advocates for their Loved Ones, especially with all those who are responsible for their medical care.  Caregivers can and should learn as much as possible about the disease so that they can be more effective as Advocates.  Caregivers cannot remove the consequences of the progression of the disease, or the debilitating side effects that come from the medications or treatments.  That is just the way it is.  Knowing that can eliminate a lot of wasted energy.  Knowing that can reduce some of the frustration, some of the feelings of failure, feelings of guilt that plague most Caregivers. 

In the moments of pain at what Mary Ann suffered, it helps to remember that I couldn’t fix her.  If I could have made her better, I would have.  I didn’t have the power to stop the ravages of the Parkinson’s Disease and Parkinson’s Disease Dementia.  She often refused to accept that there were consequences to the Disease, consequences that neither of us could remove.  While at times that caused problems in trying to keep her safe and secure from hurting herself, it was her way of coping with an impossible situation.  She needed to deny part of her reality to keep from crumbling under the weight of it. 

Her coping mechanisms worked.  She never crumbled, not even close.  Spending 24/7 with someone results in getting to know one another very intimately.  It would be virtually impossible to keep up some sort of false front.  While we went toe to toe sometimes as we confronted a difficulty of substantial proportions, she never faltered.  She moved through whatever it was, no matter how impossible, with a calm spirit, like a ship securely anchored in a violent storm.  The times that was not so happened in hospital stays.  It is why we both hated them so.  A sort of psychosis would emerge as the days went by.  In the last months, the flair ups of the Lewy Body Dementia took her to very strange places where the equilibrium was inaccessible. 

While I did not have the power to fix her, I did what I had the power to do.  She remained strong, and when the time came, she left here to find healing and wholeness.  This is one of those times I lament that tears do not easily come.  They lay just behind my eyes.  It is a sadness that I cherish.

 

September 10, 2010

Let’s Make a Deal.

Posted by PeterT under Daily Challenges, Life History, Meaningful Caregiving, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , |
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That, Thomas Merton suggests, is the model of love that has predominated in our culture.  I have needs, you have needs, let’s make a deal.  We put ourselves on the market until the deal is made.  Then, even once the deal is made, there is often still an eye out for a better deal. 

Mary Ann taught me what it means to love someone.  That is one of the gifts we received through the addition of Parkinson’s to our family circle.  Of course we would never have chosen the Parkinson’s as the textbook, but we were grateful for the learning.  The feelings that drew us together were intense and exciting and overwhelming, at least to me — I cannot speak for Mary Ann.  They are not what constitute love.  The feelings that first draw us to the one we love we are convinced are pure and selfless.  We would do anything for her/him.  Like it or not, those feelings are about us, me.  We love the feelings we have when we are first in love.  We are in love with love. 

The truth is, those feelings are the way God has wired us so that we will be drawn to one another.  They help create the setting in which love can grow.  Love is not a deal in which we get what we need or want.  Merton says: “But the plain truth is this: love is not a matter of getting what you want.  Quite the contrary.  The insistence on always having what you want, on always being satisfied on always being fulfilled, makes love impossible.  To love you have to climb out of the cradle, where everyting is “getting,” and grow up to the maturity of giving, without concern for getting anything special in return  Love is not a deal, it is a sacrifice. 

As feisty as Mary Ann was, as strong-willed, she understood how to give the kind of love that involves some self-sacrifice.  It took the challenges created by the Parkinson’s to teach me how to give love meaningfully.  It is very easy to fall into the illusion that a gesture at a birthday or anniversary or Valentine’s Day is what love is about, saying I love you every once in a while is enough.  We are expressing the feelings we have for the one we love.  Love certainly includes feelings, but the feelings are not the love.  They are part of what drives it.  They are a natural consequence of love lived.  It is the doing of love, the living of love, acts of love that nurture the feelings, not the other way around. 

In our toughest times, demanding her willingness to allow me into the most basic and personal dimensions of her daily living and my willingness to do whatever was needed, we grew the closest, the love grew the most.  We didn’t just talk about it, or make lovely and romantic gestures as if that was the substance of our love, we did it.  When I helped her off the bed into the wheelchair, there might be a lingering embrace as we moved in tandem.  We were by no means always sweet and tender with one another.  We were real people, ordinary people, flawed people, making the best of a bad situation.  I learned the most because I had the farthest to travel to learn it.  But I did learn how to love, really love.  Mary Ann and the Parkinson’s taught me.  I am so sorry she had to suffer through the onslaught of the Parkinson’s.  I am not sorry for the gift we received, a love far beyond anything we could have imagined 48 years ago when we first fell in love and over 44 years ago when we promised to love one another until death would part us. 

Merton again: “When people are truly in love, they experience far more than just a mutual need for each other’s company and consolation.  In their relation with each other they become different people:  they are more than their everyday selves, more alive, more understanding, more enduring, and seemingly more endowed.  They are made over into new beings.  They are transformed by the power of their love.”

It is that kind of love that God is.  God is the source, the Cross is the delivery system, our circumstances are simply the setting.

 

August 23, 2010

World’s Fattest Cat

Posted by PeterT under Daily Challenges, Life History, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , |
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Maybe not, but darn close.  One of Mary Ann’s challenges after the stroke was negotiating the utensils she ate with.  Getting food on to the fork or spoon and where is was supposed to go was not an easy thing.  How much we take for granted.  We don’t give a second thought to the matter of getting food into our mouth unless we are using chop sticks or trying to eat peas.  For Mary Ann, just eating a few bits of food could be a major challenge. 

To help with the problem, I got a couple of thick plastic plates from Munn’s Medical Supply.  The plates were called Inner Lip Plates (a trademarked name).  They were just that, plates with about a half inch high lip around the center part of the plate.  They provided an edge tall enough to push the food against it allowing the fork or spoon to get under it without pushing it off on to the table. 

After a year or two of using those plates, it dawned on me that we ought to be able to get plates that we could all use when we ate together with the Kids here.  We had on occasion purchased pieces of pottery from Jepson pottery that had an outlet about 45 minutes away.  His studio was only an hour or so away from us in the other direction. 

We had gone for an outing a couple of times and stopped at his Studio.  Actually, we discovered where it was located when we used the GPS on one of our ice cream runs to Emporia (over an hour away) and we drove right by Harveyville, Kansas on the way.  When we were at the studio, I saw some chili bowls that seemed a practical alternative when Mary Ann was eating soup or ice cream.  The sides seemed to be shaped in a way that might make it easier for her.  She picked out some colors that were very nice, she was very talented in the use of color. 

The Fat Cat actually was the fattest cat by far that I have ever seen in my life.  It owned the floor of the Jepson Studio.  It was friendly and not at all hesitant to engage anyone willing to scratch an ear or pet his gigantic back.  I think the answer was something like 27 pounds when I asked how much he weighed. 

We headed to the Jepson Studio again, this time with one of the plastic plates to use as a template.  He made a ceramic plate with the lip, in the colors Mary Ann had chosen.  It was just the ticket.  He made five more so that we could have six adults using the same plates, with no “special” plate for Mary Ann.  They are beautiful.  He made some high sided bowls that work even better than the chili bowls.  The plates and bowls were heavy enough that we did not need to use the piece of non-slip Dycem to keep her plate from sliding around. 

I have written about this in an earlier post.  I include it here as I review the various outings we took, adding quality to our days in spite of the limitations of the Parkinson’s. 

We enjoyed the trips out to Harveyville, but certainly liked best arriving at the final destination at Braum’s in Emporia where we had Pecan Caramel Fudge Sundaes.  Other times we picked up Friend and Thursday Volunteer Jeanne (once including Volunteer Coordinator/Friend Mary) to head out for a ride that took us to Harveyville and then through the Flint Hills to Alma.  A walk up ice cream shop had opened there after a while, so there was extra motivation to go that direction. 

One way or another, we were determined to get out of the house and so as much as we could while we could.  Mary Ann needed to eat plenty of calories, especially after she began losing weight last summer.  Whatever health issues might be associated with ice cream, they were trumped by the need for a little pleasure in a life that did not offer many. 

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

 

June 23, 2010

“The Day the Dam Broke”

Posted by PeterT under Daily Challenges, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , |
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It is the name of a movie and what happened at our (my) house last night.  I set the stage in a way that would allow it to happen.  I needed for it to happen.  It changes nothing.  It just needed to get out.

After finishing writing last night, I did a few chores and then got out the box of letters I wrote Mary Ann.  I put on the CD that had brought me to tears months ago when we first realized it was time to call in Hospice.  I read a few of the letters.  Actually, the letters did not tap my emotions.  They are pretty boring.  I ramble on about Greek tests and singing groups and learning recitativs for someone who couldn’t sing the solos at the last minute.  Each letter so far, and I am sure all of them, end with declarations of love in as many different ways as I could figure out to say them.  I have read eight of the letters so far.  Understand, for three years, except for summers when we could see each other, I wrote her a letter every night.  (No wonder I have gotten into this blogging every night business.)

Remember, I was nineteen or twenty years old and very much in love.  They sound like something from a bad romantic movie.  The only redeeming element is that I really meant what I was saying: “I don’t know how to tell you just how much I love you and miss you.  I can hardly believe it myself.  I love you.”  Then another: “Even if you didn’t love me — I love you enough for both of us.”  I will spare you any more for now.

It was not the letters. Certainly the music lowered my defenses and helped me let go of my control.  I just pulled down a picture of the two of us from a year or two or three ago.  It is the one that was cropped for the obituary.  I looked and I remembered the indignity of it all.  I remembered what she endured looking from the outside in rather than from inside the struggle.  I could not tolerate the thought that she is gone.  I spoke out loud because I couldn’t not speak.  In a moment of self-pity, I asked “Why did you give her to me to love and then take her away.”  I was angry — not out of control angry, just angry.  “It’s not fair that she should have had to suffer so — she did nothing to deserve it.”

Please understand, I realize that God doesn’t like death and sickness any more than we do.  I realize that God understands death from the inside out and the outside in.  God didn’t wish for Mary Ann to suffer, for me to be in pain with her.  What God did was hang in there with us through it all, never letting go of us.  Understand also that God’s relationship with us is strong enough and intimate enough to allow anger to be a part of it.  I needed to be angry at that moment.  Read the Psalms some time and see just how many are laments spewing anger at the unfairness of life.  Pastor Mike addressed this matter at the funeral.

Noisy tears flowed.  The dam broke.  Every time I looked at her face and remembered, the tears flowed.  In an earlier post, I mentioned that I used to count how many times I had cried in my adult life.  The first time was after I got the phone call that my Dad had died.  I was 42 years old.  Until last January, I had not yet run out of fingers on one hand to count the times.  I have stopped counting and will never do so again.

I guess there was some part of me that still thought it was a sign of weakness for a man to cry.  I knew before and I know still more certainly now that crying, actually letting the pain in far enough to feel it, is an act of courage that is demanded if wholeness and healing will come.  Running away from it or pretending it isn’t there or encrusting it in some sort protective casing is hardly the path to strength of character and the ability to endure whatever comes.

There was an interesting coincidence at our Spiritual Formation group this morning.  The lesson in our discussion booklet for this morning was entirely devoted to the need to let go, to die, before we can rise to new life.  The last of the four discussion questions printed at the end of the readings was, “What role does the reality of death and the deaths of those you love play in your life?”  Talk about timing.

Today was a busy Wednesday, as they often have been for some reason.  It started with the Spiritual Formation Group on the deck.  While that was going on Landscaper Sheila was doing her final maintenance of the landscaping she put in this spring.  She will return in the fall to do some clean up and prepare it for winter.  I am on my own for the rest of the summer.  Those plantings are in great jeopardy!

In the mid-morning, Dave came over to get a couple of death certificates and obtain the signatures needed on a variety of forms for the financial issues following a death.  Then Kristie came over to do the monthly house cleaning.  Now the house is not only empty but empty and clean.

I did some overdue posting in the computer check register while she cleaned.  It will take a while to get my bearings in that arena.  Everything seems to be on course.  I have configured the online emails from the Caregiving Spouses of those with Lewy Body Dementia so that I have to go to the web site to read them.  As a result, the hours I have spent checking emails have pretty much been eliminated.  I just can’t read those emails at the moment.  It takes me right back to something from which I need a break for now.

I had leftovers from the funeral dinner for lunch and dinner.  Next I will start on all the containers that Lisa put in the freezer when food was coming in faster than we could eat it. It should be many weeks before it is necessary for me to exercise my culinary skills.

I decided it would be best to get out of the house for a while, so I made a quick run to pick up a couple of things.  One is a zippered cover for a pillow.  No amount of soaking in Oxy Clean or spraying with Spray and Wash is able to get the stains out.  Mary Ann was taking Plavix and Aspirin to thin her blood because of her stroke.  Often her gums or nose would bleed a little during the night.  The pillow is certainly clean, and now it looks that way also.

The house is becoming very neat and orderly and boring.  I still hope to at least get my office, which is a complete shambles, cleaned up.  That happening would be right up there with the Miracle of the Loaves and Fishes.  Actually, I suppose my problem is that I have the twelve baskets of leftovers and nowhere to put them.

Here are the ideas that I have seen so far for the title of a new blog to replace this one: newlifeemerging.com; calltocontemplation.com; buildingnewlife.com; next chapter; life after retirement; thecontinuinglife.com; my journey continues; life’s journey continues; a new role begins; continuing life’s pathway; making new memories — remembering the old; progressive pathways; pathways of personal progression; day by day; heading home; homeward bound; faith journal; moving on; stepping stones (to healing).

By the way, whatever it is, it needs to be in the .com format and checked with a site like godaddy.com to see if it is available or already in use.

Well, this day has come to an end.  As I mentioned to Son Micah, the challenge is to manage the pause and stop button on the video running in my mind of Mary Ann’s most difficult days including the last one, so that there will be minimal flooding from the broken dam.  Today was better.

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

 

June 22, 2010

It’s Just Me and the Ants

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , |
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Lisa and the girls left about an hour ago.  What now?  There are plenty of things that need to be done.  That is not the issue.  There are thank you’s to be written. That will be very therapeutic for me.  The list of minor and major tasks is long.  At the moment I am doing a lot of easy, little things here at the house.

…It is now just me.  Schendel Pest Control Tom just found a huge nest outside the sun room and dispatched the ants.  There are still a few inside the house, but they are feasting on Tero, and if all goes well will be gone soon.

Sun Room contractor Jerry just called to begin work, hopefully, on putting the shade up on the deck.  I guess I am not going to be alone here today after all.  Tom and Jerry will have been over. Who knew?

I am experiencing what I have heard about from others hundreds of times.  It is hard concentrate.  It is hard to muster the stamina to do anything that takes any thought.   Getting out of the house to run errands sounds okay, but there are so many things that need to be done, running errands all day I suspect would get very frustrating.  I would be anxious to get back to the things that need to be done.

By the way, I am not (at least at the moment) whining about my situation.  I am just describing it.  There will, I am sure, be plenty of whining going on soon enough.

There was a large stack of cards in the mail again today, along with a packet from Thrivent (our church sponsored financial organization).  There was in that packet a CD of some songs that actually turned out to be helpful while I opened cards.  This is a time when simple truths, ones with which we get bored in good times or that slide into the back corner of our awareness, become very powerful.

Jerry needed help holding up the other end when he put up the shade on the deck.   That was a great distraction.  He is a talker too.  As soon as the sweat dries, I will begin running some errands.

…The errands included taking a death certificate to the bank.  All that needed to be done was get it into the records there.  I took back to her the tools that Occupational Therapist Karen had given Mary Ann and trained her to use, so that Karen could give them to other patients.  I stopped by the florist, Flowers by Bill, to thank him for doing such a wonderful job of arranging very fresh flowers that have lasted well.  He is the one who would provide much more than $10 worth of flowers when I came by to get them for Mary Ann.  I told him that I may be coming in on occasion to do the same, this time to enjoy myself and then remember.  I dropped glasses off at our eye doctor’s office for the Lion’s Club.  Looking at two of the four pairs was a frightening reminder of Mary Ann’s battle.  They were so scratched from falling on her face that the lenses were no longer usable.  We had had to replace them.

I guess I said it last night, but today it has been painfully clear that remembering her with so many abilities stolen from her is almost too much to bear.  When I think back to the challenges I had as a Caregiver, I can certainly remember the times I reached the limit of my ability to cope, but I remember with no feelings of distress. I don’t feel in any way sorry that I had to do the things that were required.  I would do it again without hesitation.  I have been trying to keep them out of my mind, the images of her sitting in that chair unable to do almost anything, trying to get up, falling, struggling to turn in bed, hating when I had to feed her.  My emotions are too raw to continue this train of thought.

The shade is now up on the back deck.  If the sun is out in the morning, the Spiritual Formation Group will get to try it out.  If rain comes, we can now sit inside the house in full view of the waterfall, listening to the rain on the speaker that brings in the outdoor sounds.  Since I am now alone here, there is no one to disturb.  Damn, I hate this!

Again, I am all right, given the circumstances.  It is very appropriate that I hate this and that my emotions are sometimes raw.  I would be in trouble if I didn’t recognize my feelings and allow them to see the light of day.  It is from that process that new life begins to emerge.  I also have moments of feeling the freedom that I have now that there are no longer the constant demands.  I am grateful that Mary Ann is whole again.  I would not want her back just so that I could feel better.  I just miss her.

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

 

June 22, 2010

Break In Next Door

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , |
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Someone came to the door yesterday afternoon asking if I knew where the next door neighbors had gone on their trip.  I didn’t know they were gone.  Then he explained what he had just found.  The back door was standing open and there were a dozen or so beer cans on the back patio.  The cans were unopened.

He explained that he had painted the cement patio on Friday and was checking to be sure that it was dry and to see if it needed a second coat.  The neighbors had been on a short trip to Texas.  Just days before their sump pump had stopped workings during a heavy rain storm.  Their basement was flooded.  For three days the cleaners were working, even one day while they were gone.

Today I found out that the thieves took the cash and jewelry.  They probably left in a hurry when the case of beer they decided to take apparently broke open on the patio as they were leaving.  The patio is no more than 25 feet from my bedroom window.  I heard nothing.  It is certainly unnerving.

It was death certificate day.  I picked them up at the funeral home.  We hardly need a piece of paper with a County Seal on it to tell us what has happened.  They will now be used to trigger a variety of transactions, most of which have no tangible impact other than keeping records straight on some computers somewhere.  There was not much available in the way of insurance since she was uninsurable due to the Parkinson’s Diagnosis twenty three years ago.  All the follow up tasks after a death at least have the side effect of keeping a person busy.

Today’s outing included taking Mary Ann’s clothing to the Rescue Mission thrift store. It needed to be done, but it was hard to do.  There was a sinking feeling as we helped unload them.  Other than a number of her well-worn favorites, the cookbooks went to the Friends of the Library to be sold in the annual book sale.  Mary Ann loved the library.  One of the professions that would have been satisfying to her was Librarian.  She loved old book stores, especially one in the Brookside area of Kansas City, Missouri.

On the way, I picked up from the repair shop the watch that my Mom had taken me out to buy near the end of my Senior Year in high school.   It is a Girard Perregaux for which she paid $85 in 1961.  The jeweler said that if a comparable could be found now it would be closer to$1500. It has a self-winding weight in it.  Still works. I don’t really care about the value.  It is not for sale.  It is for Son Micah to have.  I wear the gold watch my Dad received many decades ago when he retired.  It actually is of comparable value.  I guess old can be good sometimes.  That is good to hear.

Talking about “old,” I am now in contact with a classmate from the Second Grade, Miss Miller’s class.  That was a memorable year.  I got sick after eating a piece of peach pie.  Before it was over, my Dad plunked me down on the examination table at the doctor’s office and declared that I had appendicitis.  Dad had lost a 5 year old son to peritonitis on Christmas Eve, and almost lost another son when his appendix burst on the operating table.   He was not about to lose another son.  (The very oldest boy their first child had died shortly after birth.)  Sure enough, I ended up on the operating table having my inflamed appendix removed later that same day.

While in the hospital recuperating, it was discovered that I had Rheumatic Fever.  I missed the second half of the Second Grade year (four months).  Miss Miller spent the summer going over the school work I had missed so that I could go on to the next grade.  That diagnosis was a dominant part of my life until I graduated from high school.

On the way back from our errands, we made the promised stop at G’s for some frozen custard in memory of Grandma.  Not only were the treats as good as expected, one of my favorite young people from the congregation dished it up for us.  She is actually sort of annoying, she is a very good athlete, very smart, very pretty but not snooty about it, committed to helping others and making a difference for good, and she is a hopeless smart-aleck — all of that and sweet and caring too.  Talk about annoying.  She even admitted to reading this blog sometimes.  You know who you are!  Even after I became a Geezer I found myself enjoying the bits of contact I had with Youth in the congregation.  I spent the first 18 years of my ministry in service especially to Youth.

Someone just moved in two houses away.  She came over to introduce herself to a couple of us talking outside.  Soon there were four of us, two who had lost spouses two years ago.  As we were talking I soon realized that for the last many years, I would not have been able to stay and talk, but would have rushed into the house to check on Mary Ann.  It will be hard to get used to this new reality.

Today we stopped by church to get the list of gifts given to Faith in memory of Mary Ann.  I was surprised at how many gifts had come in.  I have started thinking about how what comes in should be used.  It would please Mary Ann very much to be able to provide that tangible evidence of appreciation of all the years of caring for her by so many Volunteers from Faith.

Early tomorrow is the time that Lisa and the girls leave on their way back home to Kentucky.  It is hard to imagine getting through these events without Lisa and Micah’s help and support.  Like it or not, tomorrow will be the first day by myself in the house.  It is a new reality — can’t go back.  Right now I am running on adrenalin. The crash has to come.  When it does, I will get through it.  The two who lost their spouses two years ago were emphatic about what is the hardest thing, the loneliness. No one can fix that, even by trying to keep the surviving spouse busy.  We just have to deal with it and survive it.

For now, the odiferous ants have arrived.  It is an annual invasion.  The Tero is out and they are gathering, eating it and, hopefully, taking it to the nest to kill more. Pest Controller Tom will be by tomorrow to do some more serious work on them.  Hopefully they will soon leave the premises. I am certainly not interested in their company, even if I do get lonely.

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

 

June 21, 2010

Current Defense — Staying Busy

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , |
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I am not sure that I have sat down for more than a few minutes at a time since Mary Ann died.  (It is still so hard to say that.)  I realize that it is a way to hold the pain at bay.  The pain is still fresh and raw, so working constantly takes my mind off it.

We have gotten mountains of things done.  We have made it through all the clothes.  Those are ready for disposition.  We have been through all the drawers in her dresser.  I have no explanation for this, but yesterday we missed two of the drawers.  We thought we were done, but we still had two more to go through today.  The contents were very difficult, especially the jewelry.  There were many cheap digital watches.  We kept getting new ones in hopes that we would find one she would wear and could read.  There were countless scarves.

When Son Micah came this afternoon, he mentioned the pantry.  I was able to shed about 60% of what was in there and give it to the Kids.   I found another stash of crafts downstairs.  Chloe will get that.  Micah will take the hangers (a huge bag).

Then came some rearranging of furniture.  My chest of drawers ended up in the closet, since there are not very many clothes left in there.  The table by her chair with the computer screen that constantly showed pictures of the Grandchildren is now downstairs and the computer moved to a corner in the living room.

The house is not dramatically changed, but enough so that things won’t completely revolve around the empty chair.  I can’t avoid the reality that she is gone.  I need to embrace that reality.  That realization will create wave after wave of feelings triggered by things I have yet to discover as well as some of which I am very much aware.

The medical equipment will remain in the garage for at least another week. Tonight’s threatening rain storm changed the plan of putting it all in the open bed on Micah’s truck.  Hopefully that will leave the garage by next weekend.  That is the current plan.

Daughter Lisa will stay and help some tomorrow, perhaps staying until Tuesday morning.  We have lots of things to take to various places.  The death certificates should be ready by tomorrow afternoon.  They need to be sent to various people to get wheels turning on changing accounts designations.  Plans need to be put into place to try to reduce household expenditures by the amount of her Social Security.  The practical matters keep a focus of attention and energy during these first days.

This morning was the first Sunday worship service I have attended sincer Mary Ann’s departure.  It was the first time that I have sat in the pew at the mid-morning service since I retired two years ago.  I wasn’t sure how it would feel.  It actually went very well, in comparison to how it might have gone.  I felt very much at home and surrounded with people who had become almost family over the last fourteen years.  There were lots of hugs and words of concern and support.  All shared the assurance that Mary Ann is secure in the presence of the Lord.

A number of folks have, of course, served as Volunteers at our home over the years.  They know the ins and outs of what we have been through.  A number of folks have been reading these posts and through them have come to have an intimate knowledge of our journey, especially the last few weeks.  It felt good to talk with so many people and experience how many there are supporting our family.

One development I wish had come before Mary Ann died.  A choice of her estranged Brother had hurt her deeply, separating him and his family from us.  I was able to make a connection on Facebook to fulfill my promise to Mary Ann that the message of her forgiveness be relayed to him.  The response has helped reconnect his Wife, Mary Ann’s Sister-in-Law, and his Son, Mary Ann’s Nephew, with me.  I feel a relief on her behalf that there has been some healing at least with the family.  The interactions seem to enhance the sense of peace she has won.

The day I will come into the house with no one else here is approaching very quickly.  I have not sat down since her death to keep the pain at a manageable level. I hope I can continue that defense mechanism until I get some more cleaning done — my office, the downstairs office area now holding all my outdated financial records. I doubt it will last long enough to get the storage area cleaned up.

The plans that are beginning to emerge will include contact with others, not just constant solitude. That the return to church this morning went all right is a good sign.  There is still plenty of serious grieving yet to do. I do not intend to run away from it.  It will be the key to my survival and ultimate good health.

I plan to collect and list the suggested addresses for a blog with a new theme as this new life begins.  Please continue to make suggestions as they come to mind.

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

 

June 20, 2010

Quilty Jacket Makes Heart Hurt

Posted by PeterT under Daily Challenges, Family, Help from Others, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , |
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I realize that Quilty is not a word, but in our house it is.  I suppose it should be referred to as a quilted jacket.  We called it the Quilty Jacket.  She wore it as often as the weather would allow in the last few years.  Then there are her Poo pants — as in Winnie, not poop.  They are pajama bottoms so worn, with numerous holes that one good tug would probably pull them apart in any number of places.

When I pulled the jacket out of the closet, I knew I could not part with it.  I can’t count how many times I helped her on with that jacket as we headed out the door.  The rest of the clothing is in plastic bags destined for the thrift store or the Rescue Mission.  It has been a very emotional day, at least on the inside.  Once, I sighed loudly while standing in an almost empty closet and from the bedroom came, “Are you okay?”  This had to be hard on Daughter Lisa too.  I would not have wanted to do it without her.

The challenge was not just the emotional part of it but the challenge of deciding what to do with what.  As others who have been in my position will confirm, decisions are very difficult to make.  The simplest task can seem overwhelming.

There were dresser drawers to clean out.  We finally found her underwear!  The funeral home asked for undergarments with the dress we were to bring over for them as they prepared her.  In her sock and underclothes drawer, we finally found a pair that she had never worn nor would she have done so.  I vaguely remembered getting them out of that drawer and putting them away when she switched to disposables a couple of years ago.  She had a huge number of socks in the drawer, resulting in the need for room.  Her socks were a signature item.  There were varied colors and themes, holiday socks, seasonal socks, polka-dots, animals.  We found the underwear in a plastic bag hanging from a hanger buried in between other hanging clothing.

I knew it would be and it is very hard to look in that closet.  I have spread out the few things I have on both sides to create the illusion that it is full.  It is not working. Actually, I decided to get rid of all things in the closet that no longer fit or are too badly worn to wear any longer.  Getting rid of my clothes was easy.  All I had to do was look at the neck size on the shirts to determine that I could no longer wear them.  Who knew that a neck could grow in later years.  It is an odd genetic quirk, having nothing to do with eating habits and the lack of exercise.  The waists on pairs of pants had shrunk.  Closets shrink clothes.  It is a known fact.  It is sort of like Radon, only not dangerous to people — unless, of course, you try too hard to button one of the shirts and strangle yourself.

I suspect that Monday some time will be the first encounter with the house all to myself, the beginning of whatever will come in life next.  The Kids are doing exactly what is needed and when.  They cannot do for me what I need to do to make it through this.  I cannot do for them what they need to do to get through this.  We can love and support one another, doing what is in our power to do.

I will get out the quilty jacket and remember and, I suspect, do some crying.  Tears do not come easily to me, but it will be important to allow that release when the need comes.  I have decided to get the box of letters Mary Ann saved from forty-eight years ago.  I have not looked at them since I wrote them.  I am sure I will be embarrassed by them.  I was so much in love with her that, if I remember correctly, I even wrote sappy poetry on occasion.  I am surprised she didn’t run away screaming after reading them.

I made an observation to Lisa today contrasting the time of caring for Mary Ann, especially the last months, with the time we are in now.  Oddly, it seems harder to think now about what we went through than it was to go through it.  Even when we were in the thick of the worst of it, I just had to do stuff.  Doing things gave me the feeling that I could make a difference of some sort.  Even if what I did seemed to have little effect, at least I had something I could do.  Now, I have the images of what we went through.  They seem more horrifying when thinking about them than they seemed when I was doing them.  When I was doing stuff, it was certainly hard, sometimes very messy, but I was just doing whatever needed to be done.

Grieving is hard work, harder than caregiving.  There is nothing more I can do for her.  I can only be sad for myself that she is not here.  I certainly do not need to be sad for her now that she is free from the illness.  I can hurt for what she went through, but I cannot change it.  My job now is to figure out what I can do.  I can live the life that I am being given.  I can make plans and do things that will honor her memory, care for my family, and become the most fulfilled and healthy person I can be with God’s help and the resources available to me.  I have absolutely no idea what those plans will emerge and where they will take me.  Whatever they are, they will have to take into account a household income that was diminished by about 40% when I retired, and another 20% now.  With a little creativity and a willingness to live simply, the plans will emerge.

I continue to welcome suggestions for a new blog address that will reflect what my life is about as the next months and years unfold.

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

 

June 18, 2010

A Box of Ashes and It’s Over

Posted by PeterT under Daily Challenges, Family, Help from Others, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , |
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What Mary Ann left behind in terms of physical matter is nothing without her.  Today”s Committal service was another simple reminder that she is not here any longer in terms of having a living physical presence.  It seems as if from the very moment she left, my gut already found acceptance that her departure is a fact.  We were privileged and pained to share those last moments with her when finally release came. That was convincing enough.

There is nothing that can be said that can communicate the sadness I feel.  My sadness is no more or less than anyone else’s who feels sadness.  Comparing one person’s to another is of no value.  My sadness is mine.  Lisa’s is hers.  Micah’s is his.  Denis, Becky, the girls’ feelings are theirs.  All I can say is there is a depth to this sadness that is beyond anything I would wish on anyone.  Those of you who have lost someone you love are likely to have a sense of the nature of that sadness.

Again, I will be all right.  In fact, I am all right in that I am experiencing exactly what is needed at this moment to allow survival.  If I tried to stuff the feelings, it would hurt rather than help.  I have a right to these feelings.  How can there be love if there is no possibility of sadness or pain on account of it.

Niece Diana and Al left this afternoon to return to Northern Illinois, where she, my Sister Gayle, and Joy, one of Mary Ann’s three best friends, will plan a gathering for a bit of worship, some remembering and some food, probably some time in July.

Shortly thereafter, Son Micah and Becky along with Granddaughter Chloe returned to their home in the Kansas City area.  Unfortunately, the Jeep they were driving all but broke down with noises threatening to call the trip to a halt at any moment.  Transmission issues are suspected.  Micah was planning to come back tomorrow with the truck to remove the larger pieces of equipment we used to battle the consequences of the Parkinson’s.  Add to that the problem created by water from the last storm invading their basement.  Becky had made a quick trip back to do some cleanup, but time and hot weather has given the mold a chance to really make its presence known.  Adding insult to injury is not even adequate to describe what they are going through.

Sunday afternoon, Son-in-Law Denis will leave for a work-related trip.  The Kids are consciously being measured in the process of leaving me here by myself.  I have a list of things for Denis and Lisa to do in the next day or two.  Assuming transportation issues work themselves out, Micah will be back also for a while.  It will help to get things in order here.  Lisa and Becky have been going through the clothes.  They pulled out Mary Ann’s favorite T-shirts to make throws out of them for the girls.  We will get Mary Ann’s clothes to appropriate places where others can benefit from them.

When I talk about things like that, the words sound very matter-of-fact.  Behind them are all the emotions you might guess would be felt as her things leave the house. I recognize that I can’t keep her.  That is settled.  Dipping my toe into the cold water of being without her a little bit at a time would only multiply the pain and extend it endlessly.

What I want to do now is remember.  Watching the online Tribute Video prepared by the funeral home (penwellgabeltopeka.com) is a very moving experience for me.  When I see Mary Ann sitting on the fender of the 1958 Chevy Impala, she takes my breath away.  I remember hardly being able to believe that she was going out with me.  I see the smile in those pictures that was rarely seen in her last years.  I want to remember the laughter and silliness, the arguments, the great times and the times staying married was very hard work. Forty-four years of marriage does not happen by accident.  Storybook romances are for storybooks and movies and popular songs.  I was crazy in love with her, but we irritated the hell out of each other at times.  The promises we made to one another in front of that Altar were absolutely serious.  They meant something.  Keeping our promises to one another emerged from our love and gave it nourishment so that it could grow.

As soon as the Kids have done what they need to do to help themselves and me take some steps forward in the transition, I will have time to do some grieving that I need to do by myself.

Last night did not include the sleep I had hoped it would since the very unpleasant esophageal spasms decided to spend the night and morning with me.  That problem emerges periodically and without warning or explanation as to why it comes at any particular moment in time.  After that was done, the day went well, given it is the day that we laid to rest the remains of my beloved wife.

After the committal, Son Micah treated us to a meal at Olive Garden.  John and Cynthia brought over a hot pot roast, potatoes and carrots along with side dishes and dessert for supper.  What a treat that was.  We are really getting spoiled in that regard.  Legendary cookie maker Lori left on our front steps two large containers of chocolate chip cookies, one batch without nuts for the kids.  Linda came by with a box of ice cream bars for the little ones (and the big ones) along with bags of homemade very good tasting chocolate chip cookies (we checked) in containers ready for the freezer.

Even receiving gifts of great food and wonderful desserts, have I told you yet how much I don’t like this?

I have been thinking more about whether or not to continue writing posts.  I don’t know yet for sure what I will do, but I think the need to write, if only to maintain my own equilibrium, will continue.  I have ceased to be a caregiver.  Other than reflecting on the years with Mary Ann, which I will continue to do for a time, I am thinking of starting a blog with a new address, still on WordPress if possible.  I am looking for a new address or url. Since I am starting a new life pretty much from scratch, any suggestions for a name to replace “thecaregivercalling.com would be welcomed.

 

June 17, 2010

A Day to Remember

Posted by PeterT under Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , |
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Mary Ann would have liked it had she been sitting with me.  The music was powerful, to her liking.  The sermon was centered on our hope and the certain promise that is the only thing that frees us to face the struggles, lament the losses, and come out alive and well.

It would have pleased Mary Ann to have Niece Diana and husband Al sitting with us. Diana, who simply does not fly no matter what, flew here to honor her Aunt Mary Ann.  Diana was the only one of our two families who was invited to stand up with us at our wedding.  They have always had a special relationship.

Our blood relatives were expanded by our adopted brothers and sisters from Kansas City, three remarkable people who had special roles with the Volunteers (by now totaling at least 70-80 over the years), members of the Spiritual Formation Group that has been a source of strength for the last 8-9 years.

Lot’s of our family and close friends who could not make such a long trip from Northern Illinois on such short notice will have an opportunity in the near future when a date is set to gather there for an event to celebrate and remember Mary Ann. It will include a short worship segment to help clarify just what has happened here and the hope that sustains us.  There will also be food to sustain us.

Have I told you yet that I really don’t like this.  I just thought I would mention it, in case you were unaware of it.

I suppose there were a couple of hundred people who attended the funeral today. What a testimony to the lives that Mary Ann has touched.  As Lutherans are wont to do, they sang loudly, filling that room with the declaration that in the face of death life has won again.  There were instrumentalists, one whose Father is thirty-two years into Parkinson’s, another who lost a Mother and a Sister to forms of Alzheimer’s. The full organ lifted our spirits.  If there were 200 people there, there were pretty close to 200 hugs that helped me and the Kids.

The vocalists included Carol, who has sung for decades and directed the choir here for many years before I arrived.  Her “Now the Green Blade Rises” burrowed into me as I began to feel the significance of the central message of the service.  Kristen’s “Consecration” took the breath away from every one of us in that room. It was done to honor all those who ministered to Mary Ann as Volunteers. I knew Mary Ann would have been especially pleased when Kristen sang “Laudatus Dominum” by Mozart.  It was certainly not possible for me to keep my composure when she sang.  I needed that release.  It was so meaningful that Kristen took time to fly in from Boston to sing. There is no one at any level whose voice is more beautiful than hers.

The readings and the words of Pastor Jim and Pastor Mike drew us to the One in whom we trust, the only One who has the power to make a difference at a time like this.  They celebrated the faith of Mary Ann who has a joyful and secure future that we would not presume to describe but to which we look forward as we journey on after death has done its worst.

Last night was a fairly restful one other than the early declarations of a wayward blackberry that decided 5:45am would be a good time to start the day.  It only took one roll back and forth under the tires of the van to solve that problem.  (Only kidding, Denis.)

I was, of course, very restless this morning, pacing back and forth.  I connected with PT’s Coffee to be sure all was well for a delivery for the dinner after the service.  I had made clear that I was not asking for a favor but would pay for that treat.  When the Kids went to pay for it, Co-owner and friend Jeff would take no payment.  A number of folks confirmed that the coffee was great.

The waterfall stopped again this afternoon, but it was only a GFI outlet.  We don’t know why it popped, but we hope it doesn’t do it again.  Brad, who built the pondless waterfall, came by almost immediately to determine the problem.

Tomorrow brings even more finality to this leg of life’s journey.  There will be a very short committal service at the grave side late in the morning.  It is called an Inurnment since there will be ashes (cremains) in an urn to be buried.  Again, since Mary Ann has already gone on her way, it is simply the period at the end of the sentence.  I don’t really know how that will feel.  Today’s service was very moving especially with the powerful music. Tomorrow’s includes a few short readings and spoken words only.

The Kids have chosen not all to leave at the same time so that I will be eased into a full encounter with the empty house.  I have lots of grieving to do.  I will need time alone to do some of it.  Just as I did during the years with Mary Ann, I plan to experience fully this leg of the journey.  I am convinced that embracing whatever is going on is the best way to get through it and on to what comes next.  If I try to short-circuit the process, avoid the pain at all cost, I will be left to carry the baggage of unfinished business.  If I do that, it will most certainly catch up at some time.  I do not want to wallow in it, nor do I want to waste the pain. I want to feel it and learn from it. That will be a lasting gift to me from Mary Ann and a way for me to honor who she has been during her time here with me.  Doing the work will allow me to get on with the life I am being given unencumbered by regrets and denial.

By the way, have I told you yet that I really don’t like this.  I just thought I would mention it, in case you didn’t remember.

It is time to sleep.

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

 

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