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 16, 2010

It wasn’t her and I’m glad.

Posted by PeterT under Family, Help from Others, Meaningful Caregiving, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , |
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I had my own little package of Kleenexes in my pocket; there were plenty around the room.  We didn’t need them.  They had done a nice job of fixing her up, but her face did not really look like her.  I was pleased.  We had all been there when she left, so the private viewing at the funeral home only confirmed that she was already gone.

We are not done with the tears — by no means is that part of this over.  The tears will come tomorrow when we gather to confront the impact of her loss and at the same time celebrate what in our Spiritual Tradition (Christian of the Lutheran variety) we believe to be a victory.  We understand death to be a real and painful loss for us and a profound victory over death.  The Parkinson’s and Parkinson’s Dementia have done their worst and lost the war.  We still have to work through all the grief that comes with such a loss, just not complicated by a sense of defeat and concern for the one who has died. My mantra has been, “She is fine. We are not.”

This afternoon, there was a time when all the rest of the family was away from the house when I walked in.  As far as I know, except for two or three times when I stopped by to pick something up while she was at her Tuesday Morning Bible Study, that is the first time in the last two years I have walked into the house without Mary Ann being here.  Actually, in the last eight or ten years, I don’t remember that happening for more than a moment to pick up something at the house while she was with someone else in another place. It struck me pretty powerfully.  It was not long before some of the family returned, but it was long enough to determine that I don’t like it.  Have I mentioned before that I don’t like this?

There is nothing anyone else can do about it.  The last thing I want is for people to try to insulate me from the reality of what is going on.  I need to experience it and get used to it.  Any who read this who happen to have lost someone and returned home to live in an empty house understand full well that we have to learn how to accept and come to terms with that new reality.

Tonight we spent over two hours greeting people who came by the funeral home to show their support for our family.  It was pretty much hugs all around.  There were many words of comfort.  There were many who offered to help in any way they could, inviting me to call or come by, threatening to pester me with their care.  They actually meant it.  I know these people.  They meant it.   For a while, I will need to hang back and get my bearings, but it is nice to know that to the degree I am willing to be assertive, I will not need to stay home alone unless I want to.  I like solitude, but I will need to find a balance between solitude and community to remain healthy.

I now know why when talking with people who have lost a spouse sometimes they get a catch in their throat when they talk about the last moments of their Loved One’s life if they were there — even if the death came years earlier.  Images of those last moments elicit great pangs of pain.  I doubt that the capacity to feel those pangs will leave very soon if ever.  I cherish those moments only to confirm for me that it is good that she let go, that she is no longer enduring the indignity of those last hours.  It frees me not to fight the acceptance, somehow wishing her back here.

We are all very tired now. It is time to try to get some rest.  I slept better last night — a very good thing.  Tomorrow will be a day to begin the healing in earnest.

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 16, 2010

Shedding Signs of Parkinson’s Presence

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , |
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I just couldn’t stop and go to bed.  I needed, I NEEDED, to empty the bedroom of everything I could find that reminded me of what we have been through with the Parkinson’s .  Gratefully, the Hospice folks had taken all the medicine bottles and the items they brought that were of no further use to us now that Mary Ann is free of the damned disease.  It did its worst, and she still won.  She has let go of it so that it has no power over her any longer.  She has a life that is as free as a butterfly, a favorite image of hers, especially in the early years.

I am not about to let the Parkinson’s Disease and the Parkinson’s Disease Dementia (a Dementia with Lewy Bodies) remain the dominant feature of our lives any more.  Pretending it never happened would be silly and deny who we became as we faced it down and refused to let it steal from us meaning and joy and fulfillment.  With that said, I don’t have to allow it to come along any longer on my journey, just as she no longer has its company in her new life.

For both of us, we now are living life after Parkinson’s.  I stripped the bed and put on fresh bedding.  At this point, I don’t even remember all the things I threw away — nothing that needed to be kept any longer.  Finally, I went to bed.  It was a fitful sleep, up a couple of times, now for no good reason.  This morning beginning at about 4:30am, my mind started working.  Every time I thought of something that I needed to do, I got up headed down the hall to my office, wrote it down and came back to bed.  I did that four or five times between then and a little before 7am.

Today has included lots of tasks.  Throughout the day, I have been reading comments on this blog and on Facebook that have provided comfort and the recognition that we are not going through this alone.  We have welcomed more food and enjoyed eating part or most of much of it, while freezing for later what we cannot consume now.  There are some really fine cooks in our circle of support.  I was able to get a much needed freely given haircut from friend and former parishioner Doug this afternoon.  Marikay’s Volunteering with Mary Ann was doing her hair there at their shop.

Son Micah wrote the obituary for us this morning so that we could take it with us to meet with Pat the Funeral Director working with us.  As I mentioned in last night’s post we were treated more like friends than clients as we went through all the necessary steps.  Having made the arrangements in advance seven years ago, it was a relatively painless process.  It still took a couple of hours to go through all the paperwork that is required.  The web site with Mary Ann’s obituary is http://www.penwellgabeltopeka.com.  Enter Mary Ann Tremain in the search box and then when her name comes up, click on her name to see the obituary.  I think the link we provided on Facebook will take you right to it in one step. Having done the pre-need plan at the cemetery, that visit was only a few minutes.

We stopped at church for a while.  The Staff there was a sort of family for the over twelve years I served there.  They listened as I shared the daily struggles.  They provided a wonderful, nurturing community.  We dropped off what has turned out to be an elegantly done, indescribably beautiful book mark that will serve as a thank you to those who have volunteered in any way to help Mary Ann over the years.

The main reason for stopping at the church was to talk about the music with Young, the Director of Worship and the Organist.  She led us to the balcony and sat down at the console to play some of what she will use as processional and recessional music as well as a hymn prelude and accompaniment.  I have absolutely no defense mechanisms capable of deflecting the power of a full organ playing music that simply soars heavenward.  It is not sweet and gentle or somber and sad.  It is energizing and thrilling and victorious.  I simply melted.  Each time she stopped and asked if that was all right, I could only nod, yes.  I could not talk.  I am in real trouble as far as trying to keep my composure on Thursday is concerned.

Later in the afternoon, I was by myself with some time to fill between the cemetery trip and the haircut.  I stopped at Lowe’s to look for some much needed deck chairs and a hose caddy.  I wandered into Barnes and Noble just to spend time before going for the haircut.  I got scared, especially when I walked around Barnes and Noble.  Everything that has given me purpose for my lifetime up to now has ended.  I have completed a career, I am done living with and caring for Mary Ann.  She is even what I have written about, her care the content of the blog.  I got scared about what I will do when the funeral and memorial up north are over, the house is in order and the thank you cards written.  Will I be wandering about aimlessly, a pathetic old man with no where to go and nothing to do.  It just scared me for a moment.

With that said, I will be fine.  Very many other people who lose a spouse after retiring have exactly the same problem.  “What do I do now?”  Gratefully, there will be time to think about that later.  Right now, there is a lot that will be going on in the next couple of weeks.

When I returned home after the haircut, Son Micah had orchestrated the removal of some of the bigger items in the house because of the Parkinson’s. I had shared with him earlier my need to rid the place of all the signs that it was ever present.  They took up the protective mesh from the ceramic tile floor in the bathroom.  We put it down after Mary Ann did some real damage in a fall.  They took up the matting for the same purpose in the garage.  The rolling shower chair, the wheel chair in the car, the support handles around the toilet stools were all removed to the garage for the moment.

Yes, part of it is that I need time to forget the horrible sight of Mary Ann suffering so much at the end.  I need not to remain immersed in remembering and focusing on the caregiving tasks of the last decade.  I need to remember Mary Ann, the person, “a force to be reckoned with” someone said, and a wonderful, exciting life’s partner.  Yes, we have been shaped by responding to the challenge; we have grown.  At the same time, we are far more than the disease.  I want to remember the “more.”

Now that she is gone, I have nothing to write about.  While I try to decide whether to just stop writing, I will describe and reflect on what is going on during these first  transitional days.  I will write a post or two on the beginnings and development of our life together.  There is a huge hole filled with pain right now.  I need to remember, reconstruct the memory of that life, lift the fog of the Parkinson’s so that the wonder of it will reappear.  I expect what I write to be boring and self-serving, but that is just the way it is.  I started writing these posts each night to find the perspective I needed to survive, to make some sense out of something that makes no sense.  I hoped they would help anyone in similar circumstances who happened upon the blog.  I have been blown away by how many have become a part of our journey in the past couple of years and especially the past few weeks.

As little as I could predict about what we would encounter day by day as we fought the Parkinson’s and the Dementia, I know even less now about what will come next.  Mary Ann is experiencing a spectacular new beginning beyond our knowing.  I am also experiencing a new beginning.  As cliche as it is to say it, today actually is the first day in the rest of my life. So far I am not liking it very well, but given time, that will change.

Plans are now final.  The Mary Ann’s funeral will be at 11:30am on Thursday at the church with a visitation at the funeral home tomorrow evening from 6pm to 8pm.  She will lie in state there from 2pm on tomorrow.  We will have private family time with her at noon. She will lie in state at church an hour before the funeral.  There will be a meal afterward at church to which we hope as many as can attend will come.  On Friday we will have a very short inurnment service with mostly family at the graveside.

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 2, 2010

Almost No Food in Four Days!

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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She ate one six ounce container of Yogurt for breakfast.  That was the biggest breakfast in four days.  Then she didn’t even eat the ice cream pie for supper.

I made the mistake of taking her blood pressure when she was lying in the bed this morning.  I thought it would be up some since I restarted the Midodrine yesterday to see if we can reduce the fainting spells.  Her BP measured 280/130.  That is frighteningly high.  Here is the kicker: twenty minutes later, while sitting at the table I measured it again. It was 95/75.  In the mid-afternoon, while she was lying down, I took it again.  It was 245/115.

Since we have few options, I plan to continue the Midodrine at some level.  She has still been fainting, in fact there is a new twist.  After being out for a while, twice shen stiffen like a board in a mild seizure-like event.  She wouldn’t bend — in the middle or at the need.  She was stretched out full length, locked in that position.  It happened once when trying to get her back into bed.  It happened a second time while on the toilet stool, dealing with a messy BM.  The good news is neither did I become frustrated or get upset.  I just laughed.  I waited until the stiffness seemed to soften a bit and just picked her up and repositioned her.

I am tired of being upset about what is happening.  It is time to just deal with it.  I am grateful that our Daughter, Lisa, and Granddaughters, Abigail (7) and Ashlyn (5) arrived late in the afternoon.  It has been good to see the girls and have Lisa to talk with.  Just as Son Micah got to experience the challenge of bathroom duties on Monday, Lisa got to experience that challenge today.  Mary Ann responded a bit a couple of times to Lisa.  Whether she is able to respond or not, it is clearly meaningful for Mary Ann to have them here.

I did get to talk with someone on the Staff at the Senior Diagnostics Center at a local hosptial today.  The person was a bit abrupt and on hearing that Mary Ann had been diagnosed with Lewy Body Dementia two or three years ago, she responded that LBD folks go quickly.   While I do not wish to ignore the harsh reality of our situation, it was no fun to have it tossed in my face in such a matter of fact way.  I explained the situation, adding that her vitals are still pretty good.  She did not dismiss us out of hand, but seemed genuine in saying that she would check with the doctor and call us back tomorrow.

I have very low expectations of any meaningful option emerging when she calls back.  There are some hints that the Midodrine raising her BP is allowing a little more mobility — at least for a few moments before fainting.

It was good to have an extra set of hands and arms when the heavy lifing came.  Lisa was a CNA for some years while in high school.  She ended up Administrator of a large multilayers facility for the older population.  She has been parenting full time since the girls were born.

Tomorrow evening, Son Micah will join us as we look at the rapid developments these last few days.

There is more that I could say, but I am struggling to keep my eyes open.  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.

 

June 1, 2010

Last Ditch Effort

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , , , , |
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Her vital signs are still good.  It is too soon to give up and simply wait.   Her lungs are clear, her blood pressure is within her normal wide range, heart beat is steady and normal for her, oxygen saturation percentage is good.

She managed to swallow most of her morning pills with a little juice.  She was in bed the rest of the day.  Every two hours I got her to take meds I couldn’t get her to take yesterday.  Tonight, she indicated again that she would eat some ice cream pie.  She ate a small piece.

Then came the dreaded bathroom battle with some messy BM.  The difficulty is at a 10 each time now.  I will do it as long as physically possible.  I can only hope that my muscles will respond by strengthening to match the task. I got her back in bed and shortly thereafter gave her the nighttime pills, which she did manage to swallow, with difficulty.

The last ditch effort is this.  I mentioned it in last night’s post.  I am giving her less Seroquel in hopes she will be able to sleep less during the day and be more alert.  I have begun the Midodrine again to raise her blood pressure to a level that months ago seemed to control the fainting.  I recognize that these changes not likely to make much difference at this point, but the options are simply slipping away.

I managed to get hold of the office of the Psychiatrist that was recommended as one capable of handling this complex a combination of problems.  I was informed that he does not take outpatients.  There is a Physician’s Assistant that works with him who does.  An appointment with her would be at least a month out.  At this point a month is an eternity.  We are focusing on hours and days in determining what to do. The only access to that doctor would come through the inpatient Senior Diagnostics program at the hospital.  I may call and go through the process that determines eligibility for admittance. We are running out of options.

The Hospice Nurse is going to check with the Pharmacist to see how many of the meds might be available in liquid or some other form that would be easier to take.  She is also going to have the Pharmacist see if there are any meds that can be eliminated since they are for long term issues.  For instance, the cholesterol medicine, which is a fairly low dose seems superfluous at this point.

Volunteer Tamara stayed with Mary Ann for a while this afternoon.  I was able to get out and run a couple of errands.  One resulted in the added frustration of replacing a broken wireless network adapter on the computer we have in the living room so that Mary Ann can see pictures of the Grandchildren.  Of course, I can’t get the new adapter to work properly.  The stress of trying to phone someone and spend an hour or two trying to follow directions is just not something I can deal with at the moment.  At this point, little frustrations become huge quickly.  My lack of computer skills is impressive.  I will leave that problem for another time.

Volunteer Tamara asked if the Hospice Nurse had checked Mary Ann for pressure sores.  Now that she is lying in bed all day long every day, that is likely to become a problem soon.  Daughter Lisa has suggested that I turn Mary Ann when she is in bed for a long period of time.  I realized that the Hospice Nurse probably should have picked up on that concern checked for problem areas and offered a hospital bed again.  I will phone and ask about that since I need to ask the Hospice Aide to bring more wipes and chux.  At the Nurse’s suggestion, I am using chux to catch what has almost constantly been coming from Mary Ann’s mouth these last three days.

Since Mary Ann has been sleeping all night long the last few nights, I am not sleep deprived.  I still feel as tired as when the nights were difficult.  I have little doubt that has do to with the mental and emotional drain of accommodating the recent changes and their implications along with the frustrating search for adequate medical support.

One piece of good news is that Daughter Lisa and Granddaughters Abigail and Ashlyn will be arriving tomorrow afternoon.  They plan to stay for a few days.

We have been in uncharted territory for most of the time the Parkinson’s has been around, and certainly since the dementia has joined the fray.  The distance to the end of this uncharted journey seems to be diminishing at a frighteningly rapid pace.  I will continue to search for options, at least while those vital signs stay strong.

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.

 

May 30, 2010

Losing Ground?

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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I am just not sure how to assess the day, but I am sure I don’t like it.  The signs pointed to the hallucinations firing up last night.  She was restless at first.  The hallucinations fired up between 3am and 4:30am.  Then she slept for a while.

She did try to get up early, but when I took her to the bathroom, she fainted.  I had to put her back into bed and she slept for a while.  There has been a pattern that has played itself out all day.  When she is lying down, she has often been talking apparently about or to the hallucinations.  I described that before. She often has her eyes open when she lying there talking.

When she became alert enough to sit up, usually wanting to go to the bathroom, after a short time her eyes would slam shut and it would cease to be possible to communicate with her.  She simply could/would not respond.  I had to put her back into bed since there was really no other option.

She did manage to get up for breakfast, but then and most of the rest of the time I tried to talk with her, she could not speak intelligibly.  Once this evening when the words she used were recognizable, they did not match what she wanted.  She said she needed to cook a meal, when it became clear that she intended to say a drink of water.

[WARNING — GROSS CONTENT] I was barely able to get food into her mouth for the little bit she ate. At breakfast, she did get her pills down with much difficulty.  I fed her a few spoons of yogurt before she just didn’t take any more.  I found out shortly thereafter that the last bites had not been swallowed.  As she sat in her chair for a while, I had to get napkin after napkin to deal with what had not gone down, along with lots of clear fluid.  Sorry to include such unpleasant stuff, but it I have passed the will to be delicate and I am too tired to try to think of some cute euphemistic way of saying it.  This matter of not swallowing food and uncontrolled saliva production is a new and unsettling issue for me.

The difficulty in dealing with the once or twice a day intestinal activity really is pretty close to being unmanageable by myself.  To hold up her weight with one arm, as she is pulling away from me while I am cleaning with the other is just barely doable.  That has been continuing for many days now with no sign of improvement.

All of this is becoming a very old story to those of you who read these posts regularly.  What seems different to me is that we appear to be losing ground at a pretty rapid rate by comparison to past declines.  It seems that every few days something worsens.  The changes seem too rapid to me to be a normal part of the disease process.  In my mind the evidence still points to medication issues for the rapidity of the decline.  The trouble is that there seems to be no clear and definitive approach to medicating those with a form of Lewy Body Dementia that produces consistent results.  The same med can produce opposite results in different patients.

I may simply be in denial and the rapid changes may just be a function of the disease.  As our Parkinson’s Speicalist once said, after 23 years of the disease and the meds, there is no telling what problems are caused by side effects of meds and which the progression of the disease.

Volunteer Elaine came over to spend time with Mary Ann this morning while I went to the lake to sit and read and ponder and look for birds.  Today, it was hard to leave, and I couldn’t let go of concern for Mary Ann lying in bed talking to the hallucinations.  Mary Ann ended up sleeping (or just lying there) the entire time I was gone. I just don’t like how much more difficult this is getting and how fast it is moving.  It is not so much life threatening as it is that our system here at the house is being threatened.

One bonus this morning was that Elaine surprised us with a Quiche she made for us while at the house.  Not only that, but Volunteer Tamara had asked yesterday if she could bring food to us again.  When I answered her question about what Mary Ann liked, what popped into my mind was, Quiche.  This morning while Elaine was making her Quiche for us, Tamara brought two more.  Mary Ann ate a piece of one, although the same thing happened that had happened with the yogurt earlier in the day.  I ended up eating a couple of pieces of one and one piece of another by the time the day was over.  They all appear to have home made crusts.  They are wonderful.  One will end up in the freezer in pieces to be heated in the microwave later, but I suspect two of them will be long gone before that happens.

I am hoping for a better day tomorrow since our Son, Daughter-in-Law and Granddaughter are coming over for a while for Memorial Day. The menu will be Quiche — and Glory Days pizza for those who are not into Quiche.

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.

 

May 29, 2010

They’re Back!

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , |
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Here we go again!  Last night included a number of times up, suggesting that we were cresting the hill on the way back to hallucinations.  During the night, they were not as intense as I expect them to be the next couple of nights (hopefully only a couple) before there is any realistic hope of a break from them.

This morning she started trying to get up very early.  I managed to get her back in bed a number of times until about 7am.  I gave up on that strategy and got her up.

The truth is, I am more frustrated with my reaction to the hallucinations than I am the hallucinations themselves.  I want to become able to take them in stride and respond without getting grumpy.  I apologized for being so grumpy and explained to her that I was frustrated from trying to deal with them for so long and feeling helpless to do anything about them, especially with no medical help from a competent doctor at the moment.  I was a little surprised that she responded in a way that suggested what I said had found a path through the hallucinations to Mary Ann herself.  She seemed to understand what I was saying, recognizing especially the issue of trying to deal with this with no doctor in the picture yet. In fact she managed to describe of whom she was thinking well enough to determine that she was suggesting a local Neurologist whom we have used in the past (when she had a stroke), a doctor we like.  He is not likely to have the specialized knowledge that we need, but it is worth a try.

At the moment, I have not received return calls from two contacts made last week.  I am disappointed, since in one case a nurse from a dementia clinic was supposed to phone with answers to my questions about Lewy Body Dementia.  In the other case, I left a message on an answering machine. The only option from which I have the information I need that would allow us to proceed is the one I find the most distasteful.  It would involve a few days in the hospital.  The hospital has always thrown Mary Ann for a loop.  In each case there was pretty much a psychotic break from which we never really regained the lost ground.

Today, after our conversation, Mary Ann managed to stay seated long enough for me to get a shower.  I gave her the morning pills and got her breakfast.  It was not too long thereafter that she ended up back in bed.  She said she wanted to go to the bathroom, but she fainted to such an extent that I could not get her on the toilet stool.  I put her back in bed and she has been there ever since.  That was around 9:30am.  It is now almost 4pm.

Volunteer Tamara, came at 10am to give me a chance to nap if we had had a difficult night.  The timing was perfect since this was the first bad night in the last five.  When Tamara was with Mary Ann last Monday evening in a regular Volunteer slot, it was obvious to her that I had not slept much either in the prior 8 days of Mary Ann’s intense hallucinating.  She suggested the option of adding a nap time option on Saturday and one other day next week.

Volunteer Coordinator Mary and I are talking about adding a Saturday time slot regularly just for that possibility.  There is no way to be sure when bad nights will come, but having the time to nap or just get away for a while is helpful.  This morning I was able to nap for a couple of hours and also leave the house to do a couple of errands before Tamara was due to leave at 1pm.

While, since Mary Ann has slept so long, I would have been able to nap today, I would not have been able to get out to do the errands.  I could not have known in advance that she would sleep most of the day.

What lies ahead is still unknown.  Of course, that is always true, but there are not even clear expectations.  The pattern from before the increase in dosage of Seroquel was that Mary Ann would hallucinate for two days and three nights, then sleep for two days, then have a transition day during which the most lucid moments came. Then the hallucinating would begin again.  Since this disease is so erratic in its presentation, using the word “pattern” is pretty silly.  It does what it will do when it chooses — and that is that.

…It is about 9:30pm now.  She slept through until about 6:30pm.  She had indidcated that she wanted something to eat, but by the time we got to the table, she was no longer able to speak intelligibly.  I couldn’t figure out what she wanted or if she still wanted anything.  I just held her for a while.  At that point, she couldn’t sit up straight — almost fell off the chair.  I did manage to get her to take some spoonfuls of applesauce.  Finally, she just could not respond in any way.  It was tough to get her from the dining room chair to the transfer chair.

I managed to get her to the bed, but by then it was apparent that there had been some intestinal activity.  She was almost completely limp, but I needed to get her to the toilet stool, cleaned and changed and back into bed.  If last Saturday’s struggle with that task was a 10, this one was a 9.9.  It all got done and she ended up back in bed.  I was physically as exhausted as I was last Saturday.  I was not as emotionally exhausted.  For whatever reason, I kept my cool during this one.  I just did what needed to be done.  I hope some progress has actually been made in dealing with that problem.  Admittedly, I was much more rested today than I was last Saturday.

I settled on the deck for some devotional reading.  It was a beautiful evening, warm, but with a pleasant breeze.  After a short time there, I saw on the video monitor that Mary Ann was moving.  I went in to check.  She was able to speak more clearly.  She wanted to eat something. This time it was some vanilla ice cream with hot fudge and pecans.  After eating, she watched Dr. House for a half hour or so, and has now taken her bedtime pills and gone back to bed.

Today while she was lying in bed, on occasion she would be there with eyes open, talking to people only she could see.  While we were sitting next to one another in front of the television before she finally went to bed, she was doing the same, this time with her eyes closed.

Sleeping all day and having moved into the hallucination cycle leads me to expect a more difficult night tonight than last night.  She appears to be restless at the moment.

…This time it was another trip for #2.  This time it was at least a 9.95 compared to last Saturday’s 10.  She was sort of dead weight thrughout, but including enough involuntary twisting and moving her weight against what I was trying to do as I sought to hold her up, that I almost could not get the task done.  If nothing in this short and chubby body gets broken, pulled or herniated, I am going to be a force to be reckoned with physically.  This is like going to the gym multiple times a day.

I had better close, otherwise I may be writing all night and have nothing left to write about tomorrow — unlikely!

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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