Relationship Issues


It seems odd that a simple day of getting up, doing stuff and going to bed could be so great.  We both had an appropriate number of hours of sleep.  We got up and a reasonable hour.  Mary Ann seemed to be connected to the realities of the day.

Not too long after breakfast, Hospice Aide Sonya came to do Mary Ann’s shower and hair.  It was almost comical to hear Sonya describe it.  Mary Ann had a couple of monumental deposits to make during Sonya’s time with her.  Sonya described in great detail the nature of the deposits.  Her description reminded me of the latest round of Subway commercials.  I will leave the rest to your imagination.  I was grateful on a couple of counts.  One, Sonya got to share the joy of waste management duty, sparing me the task.  Two, it was a much needed basic bodily function that will help Mary Ann function better and feel better.

After that, we watched television together for a while.  I made trips to the computer to read emails.  I also got started on a couple of loads of wash.  Mary Ann ate a pretty substantial lunch, then we headed out in the car.  The local Asparagus is coming on, so we headed to Meier’s market to pick up a few pounds.  I practically live on it when the locally grown crop is available.

After that we headed to Flowers by Bill.  Daughter-in-law Becky made a deal with me, trading the benefit of my cell phone on their account for me getting Mary Ann fresh flowers periodically.  This is the second time I have done it, and both times I have been surprised at the spectacular bouquets I have received.  I have gone in each time and told them what I am doing.  I have asked for whatever they can give me for ten dollars.  Each time they have come out with an arm load of beautiful flowers.  This time there are daisy mums of many different colors (20 open blossoms), carnations (9 open blossoms), alstermaria or peruvian lilies (3 stems each with multiple blossoms on each stem), and a huge yellow rose.  The bouquet has filled the living room with color.

We made an obligatory stop at Dairy Queen, since it is still buy one Blizzard and get the second one for 25 cents week.  I guess today could be designated Flower Day.  Shortly after we got back home, Volunteer Maureen drove up.  She delivered birthday presents for Mary Ann and me.  One is a vining geranium in a hanging basket, providing color just outside our kitchen window (where I now spend an inordinate amount of time each day).  The other is a Gerber Daisy sporting lots of large yellow blossoms.  Maureen remembered that yellow flowers are a favorite of Mary Ann.  That now sits on the deck just outside a glass panel in full view of Mary Ann from her chair.

At supper time I actually made a sort of normal meal – a rarity.  I browned cut up ring sausage in olive oil with lots of onions.  Then a ton of the fresh Asparagus went into a pan to be steamed.  At the market there were some small white potatoes that the owner had kept back for the family last fall.  They had some left and offered them for sale.  I steamed them with salt, dried onions and parsley, drained the water off and covered them with butter (margarine).  I was surprised at how much of the garden flavor they had retained.  Mary Ann apparently approved since she cleaned her plate of every speck of food I put there.  That almost never happens.

After finishing the couple of loads of wash and cleaning the pots and pans from supper, I decided that if there is some sort of certification as a domestic engineer to be had, I am now qualified.

I plan to spend a little time tonight with a newly obtained book on St. Patrick’s Breastplate.  Each chapter is a reflection on one of the phrases in the prayer.  YouTube will provide sung versions of the prayer to give it fuller expression.

I will accept today as the gift of a kind of normal day that most would find boring, to be taken for granted.  To me it is a refreshing encounter with something to be cherished, never to be taken for granted but instead savored.

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.

One night and day like this are about all I am up to.  Last night the hallucinations fired up.  When I say that we got less than half a night’s sleep, I mean that if the night were to be sliced down the middle, lengthwise, there was sleep that totaled less than half the available time.  In other words, there was about twenty minutes out of every hour that may have included some sleep, at least for me.  As I write that, I suspect that I am exaggerating some.  I doubt there there was twenty minutes in any hour that was not spent trying to explain away hallucinations and convince her to lie down and go to sleep.

Once after I had pointed to her quilt on the wall and the family pictures on two other walls in the bedroom.  She stared me in the face and said in a very belligerent tone: “All right, now just take me home!”   At one point she was crying uncontrollably during a dream.  Almost immediately after I hit the publish button on last night’s post, she got up and then fell down in the corner of the bedroom. When I got there she was talking utter gibberish in a loud voice like the sounds she makes sometimes when she is starting to faint.  They are awful sounds.  They may have been some sort of wailing that was part of a dream that was going on when she fell.  I was afraid she had had a stroke, but when I got her up, she seemed to have awakened from whatever form of dream she was having.  She was still not at all lucid.

After having clear and healthy looking urine all day, up until the time she went to bed, she started showing some blood in her urine. I phoned Hospice, grateful to have someone to call.  The Hospice Nurse said she would bring over a kit to gather urine so that she could be tested for a urinary tract infection [UTI].  We agreed that it would be okay to wait until morning to bring it over.

After an entire night of getting up and down again and again, trying to get her to settle, she got up very early.  I had set the alarm early so that I could get a shower in before the nurse came.  Mary Ann was up before the alarm went off.  She was in hallucination streaming mode.  I simply cannot endure that for very long.  She hops up immediately after sitting down, needing to go somewhere, not always sure where.  She was in fainting mode, so each time she insisted on getting up and walking somewhere, she ended up on the floor.  I was with her each time, so I had to let her down to the floor, sometimes dead weight, so that she would not hurt herself.  Then I got the transfer chair beside her, pulled her up on to her feet and back into the chair.  As soon as I moved her back to her spot, she would pop up and the procedure would start again.  I could not begin to count how many times that happened.

I did manage to get her fed, no small task since she was hallucinating and paying attention or talking to whatever or whomever she was seeing.  I am utterly helpless to do anything about problems created by people or objects that have no corporeal presence.  They just don’t exist outside of Mary Ann’s plaque laden brain cells.  Whether or not they are real, they are so to Mary Ann.  They elicit the full range of feeling and frustration and fear that they would if they actually were real.

I had to sit two or three feet away from her every minute, or she would get up and move someplace where she could be hurt.  I could not so much as get in a fifteen minute shower.  The Hospice Nurse had to be late, since a client had died and she had been up with them all night.  I followed Mary Ann around, picking her up again and again for two or three hours, until just minutes before Nurse Emily arrived when Mary Ann simply crashed and had to go back to bed.

Nurse Emily dropped off the urine gathering kit for me to use later, but she was also willing to stay for fifteen minutes extra so that I could take a shower.  During that time Volunteer Edie came to stay with Mary Ann.  As always Edie brought lunch. This time it was a favorite of both Mary Ann and me, a Greek style meatball and veggie soup.  Mary Ann slept about three hours, beginning before Nurse Emily and Volunteer Edie arrived and ending just after Edie left.

We ate lunch, and afterward, Mary Ann started the same pattern as the one that had almost driven me crazy (short drive) before her nap.  A number of times when she popped up in the afternoon, she was irritated that I didn’t get her into the car to go to the Evening Service at Church.  The service is at 6pm (ten minutes away from our house) and she started popping up around 2:30pm.

The afternoon pop-ups included four or five of them beginning a trek to the bathroom, where the fainting and intestinal production ending up in the wrong place happened a number of times.

We did manage to get to the Evening Service, but I was wasted and worn out, and Mary Ann was not able to participate much in the service. There is enough structure to the service, that we could at least make it through the service.  Church and supper did not change the pattern.  We ate supper, Mary Ann sticking her spoon in the Pepsi and her napkin in the soup, often seeming to try to eat the napkin with the spoon.  Sleepless nights wreak havoc on her dementia.

I won’t deny that I had been hoping all afternoon and evening that she would go to sleep again.  She did not.  Now finally she is in bed.  She has been continuing to pop up and down, sometimes thinking it is morning.  I have had to talk her out of getting up and dressed.  I don’t know that I have another night like the last one in me.  I guess I don’t have a choice.

What I have written may make no sense, I am so wasted that my eyes keep shutting.  I need to get to bed. (Too tired to edit. It goes out errors and all.)  [I am adding this sentence to indicate that I have now edited this post, and Mary Ann and I did get some sleep last night.]

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The short string of good days ended, beginning last night.  The remote control sitting two feet from her was a candy bar.  That and some other comments hinted at what was coming.  Last night she was up at least once an hour throughout the night.  She got up early this morning.

As I sat next to her in the living room she spoke with a very rational and clear voice asking about some things.  She asked if the blond young man who had come by was Daughter Lisa’s boy friend.  There was no blond young man, and Lisa, husband Denis and the girls in Kentucky are absolutely secure.  No amount of talking by me or Lisa has managed to remove that from her repertoire of hallucination/dreams/delusions.

She wanted to be sure to get the Tom Mix Western back to the library.  We haven’t been to the library and certainly have never taken out a Tom Mix book.  He was a western hero in the movies from before Mary Ann and I were born.

She wanted to make a list of things to send to the kids, all she could think of was a blue tennis shoe for a baby she concluded they had left here.  She looked outside that decided that there had been an avalanch.  I asked if she was referring to the waterfall.  She said it was under the waterfall.  She was struck by the orange-green tree in bloom in the back yard.  We do have a Tulip Poplar that has orange and green blossoms early in the summer.  There were barely any leaves on the tree yet.  Where she was looking when she said that was not where that tree is located.

She decided that the eyelets on my hiking boots (which I wear every day now that I am retired) were jingle bells.  She tried to make them jingle but they would not work.  She told me in that matter of fact voice that her oldest Brother’s widow had changed her last name, having married someone whose name was new to me.  I am confirming that such a thing has not happened.

We talked for a while about the fact that I knew the things she had said not to be true outside of her thinking and dreaming.  She said there was no reason that I would lie to her about it, espeicially about our Daughter.  She said she just felt that people were keeping things from her.  I explained that all the folks I read about online shared that their spouses suffering from the disease that she had talked the same way about things.

I recognize that telling her it is the disease is not going to convince her that the dreams/hallucinations/delusions are not real.  I just want to be consistently telling her the truth as I understand it since sometimes she is lucid and seems to understand that they are not real.

She was not up for long this morning before wanting to lie down.  She slept for over five hours.  I knew that I should insist on her getting up periodically to go to the bathroom, but she seemed unable, certainly unwilling to get up at the two hour intervals at which I gave her a pill.  There was bedding to be washed and pj bottoms to be washed.

She finally got up to eat a late lunch around 4pm.  We were invited to head to Neighbors Carol and Eddie’s house for ice cream and goodies.  I thought we could try.  Mary Ann wanted to do it.  She was having trouble with hallucinations as well as trouble sitting up without fainting.  I asked her again, and she insisted that she was all right. I called to say we would be coming over in about an hour.

Immediately after doing so, she moved to her spot in front of the television and her head went down on the little table with the pillow.  After a bit the deadly combination of fainting and intestinal activity began.  I was able to get to the phone to cancel just before it began in earnest.  Gratefully, it did not last as long as it had that last and most difficult Saturday evening.  As always, it was very demanding physically.  It has to be hard on her, but she remembers very little of it.

She is in bed, but seems to be in the sort of mode that is likely to result in lots of night time activity.  That remains to be seen.

I spent the time she was napping in deck therapy and more sunflower seedling removal.  I reread the article from Weavings that I read yesterday.  I also got the latest newsletter from a nearby Spiritual Formation retreat center called Shantivanam.  The newsletter has a short series of segments for meditation.  The birds were fairly active again.  By the way, the crazy Robin returned this morning to challenge his reflection in the lower window on the deck.  They had quite a battle.  I am not sure who won, but he finally left after a half hour or so.

A few minutes ago, Mary Ann needed a commode trip and asked if the people were settled down and in bed.  I just couldn’t bring myself to follow the general wisdom and just say yes.  I told her that while I could go along with the hallucinations, I wanted her to know that I would always tell her the truth whether she wanted to hear it or not.  I told her that there are no other people here.  It is just the two of us, and we are in this together.  Whether it is the best way to respond or not, it is the one I have chosen.

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Recently in the online Lewy Body Dementia Spouse Caregivers group, a short discussion began about differences in the way husband Caregivers and wife Caregivers deal with their role.  I have copied an article from the AARP website on the matter.  While all of us have common challenges irrelevant of gender, there are some different cultural patterns that seem to come into play for males and females.  The task is equally difficult.  I have to say that I identify with much of what is written below.  At the end I will include an update on a fairly uneventful day at our place.

The New Face of Caregiving: Male Caregivers

By: Cathie Gandel | Source: AARP Bulletin Today | – January 23, 2009// <![CDATA[
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Photo by Blasius Erlinger/Getty ImagesPhoto by Blasius Erlinger/Getty Images

When his wife, Chris, was diagnosed with breast cancer on their 19th wedding anniversary, Dave Balch suddenly found himself with two full-time jobs: running his home-based software business and taking care of her. “I don’t know how I managed everything,” says the 60-year-old from Twin Peaks, Calif., whose wife continues to fight recurrences of the disease six years later. “But you do what you have to do.”

Each year, more Americans are finding themselves in a similar situation—and challenging preconceived ideas about men and caregiving.

“People think that male caregiving means that the guy calls home from the job and asks his wife how his mom is doing,” says Donna Wagner, professor of gerontology at Towson University in Towson, Md. “That’s not true at all.”

A 1997 survey conducted by AARP and the National Alliance for Caregiving, a research and advocacy coalition, found that 27 percent of caregivers were men. By the 2004 update, that figure was almost 40 percent, with more male caregivers (60 percent) working full time than women caregivers (41 percent). Among the reasons for the increase: smaller families, longer life spans, more women working outside the home and greater geographic separation of family members.

While male caretakers face many of the same challenges as their female counterparts—including depression, stress, exhaustion and reduced personal time—they approach their caretaking role differently, say some experts.

“Men approach caregiving as a form of work, a series of tasks that needs to be accomplished,” says Edward H. Thompson, coeditor of Men as Caregivers and director of gerontology studies at Holy Cross College in Worcester, Mass. “I don’t mean that to sound harsh. It’s just the way they look at things.”

Because they are used to delegating, they are more comfortable seeking outside help when they need it, says Richard Russell, associate professor of social work at the State University of New York’s College at Brockport.

Donald Vaughan, a 51-year-old freelance writer in Raleigh, N.C., has an aide come in three times a week to bathe and shave his father. “It’s worth every penny I pay,” he says.

But despite feeling isolated, men tend not to seek help for themselves, at least not from traditional support groups. Instead, some forge their own connections. In Rochester, N.Y., some fellow caregivers meet once a week for breakfast. “The men talk about sports, politics and grandchildren,” Russell says. “They don’t mention caregiving. It’s as if they have made a pact that this is their time to be just regular guys.”

Men also try not to bring their caregiving situation into the workplace. They not only have been socialized to keep things close to the vest, they also perceive a stigma associated with taking time off for caregiving responsibilities—and sometimes a lack of understanding from employers.

John Young experienced that feeling firsthand. The 55-year-old nursed his late wife through Lewy body dementia, a disease that combines the mental deterioration of Alzheimer’s disease with the physical disability of Parkinson’s disease. When his wife became ill, Young was teaching in a police academy in a Houston suburb. At first she was able to stay on her own while he worked, but one day she called with an emergency and he had to rush home. “When I returned, my boss called me in and asked, ‘How much longer does she have?’ ” Young says. “I knew it was time to go.”

Even those who work at home have trouble juggling responsibilities. “Taking care of my dad has had such a dramatic impact on my life,” Vaughan says. “One part of my brain is always on my father. And my time is nickel-and-dimed throughout the day. It’s hard to get a long period when I can do my work.” He interrupts his writing intermittently to make sure his father drinks enough fluids and walks up and down the hallway for exercise.

“The worst part is the exhaustion,” says Gary Noble, 64, who cares for his wife, who has multiple sclerosis. He also works as a bus driver in Livermore, Calif., and often has split shifts. He may come home at 8:30 p.m. Before he goes to bed at 9:30, he has to cook, clean up and tend to his wife’s needs. He needs to be up again at 3 a.m. “I’d appreciate just a few hours off sometimes,” he says.

John Carlson, 57, of Woodbury, Minn., takes care of his 88-year-old father, who is in the early stages of Parkinson’s. “The most difficult part is having time away from home,” he says. “Dad covets my time, as most of his days are spent alone.”

While any relationship may suffer in the caregiving equation, the issues are particularly difficult for those caring for a spouse, says Donna Wagner. Richard Anderson, president of the Well Spouse Association, a nonprofit organization that provides peer support to those caring for a partner with chronic illness or disability, agrees. He took care of his late wife, who had an autoimmune disease, for 29 of their 31 years of marriage.

“Spousal caregivers are different because of the intimacy of the relationship,” he says. “It’s hard to have sexual feelings toward your partner if you have to deal with incontinence and other personal issues.”

Despite the difficulties these men face, there is some good news. “My wife and I spend a lot more time together,” says Ray Heron, 57, of Charlottesville, Va., who has been caring for his wife, who has MS, for 10 years.

The caregiving relationship has brought Chris and Dave Balch closer, too. “This can really put your love for each other to the test,” Chris says. “In our case, it made it stronger.”

Tips for Male Caregivers
“There is no manual on this,” says Vaughan, the freelance writer in Raleigh, N.C., who cares for his father. “You learn day by day.” But here are seven tips passed on by men on the front lines of caregiving.
1. If someone asks what they can do to help, have a list in the back of your mind and tell that person.
2. Have something to look forward to—whether it’s a big trip or just a rental movie to watch at home. Remind yourself that you will get through this.
3. Acknowledge your emotions. You’re human, not a robot.
4. Set up a group e-mail to keep family and friends in the loop.
5. If you’re a spousal caregiver, don’t put off shared pleasures. If you and your wife always dreamed of going to the Caribbean and the trip is still feasible, do it now.
6. Remember that most of the little issues don’t count. Discuss them and find what works for both you and your patient.

7. Learn as much as you can about your patient’s disease, even though it might be scary.


As I mentioned earlier, today was a fairly uneventful day.  The night went reasonably well.  We both slept later than usual.  Hospice Aide Sonya came to get Mary Ann showered and dressed.  We ate here at the house, then headed out for a short ride in mid-afternoon.  Mary Ann napped when we got back.
I used the nap time for deck therapy.  Today I received the new issue of Weavings, a Spirituality Journal that I find very helpful.  That and the setting combined to provide a refreshing respite.  The respite time included some forays into the forest of sunflower seedlings in and around the waterfall – a consequence of spreading seed over the snow to keep the winter birds healthy and well fed. I pulled up mounds of them.
As I sat on the deck, the annual visit by a pair of Mallard ducks brought them through for a quick bath and a drink in the waterfall.    They and the rest of the birds seemed to be pretty relaxed about my presence on the deck.
Mary Ann had a reasonable quantity of food for supper (a hamburger, sweet potato fries plus a big bowl of strawberries and ice cream).  Mary Ann has gone to bed and so far seems settled.  We will see how the night goes.

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.

Yes!!!  There has been an especially thought provoking thread of conversation in the last couple of days in our online group of Caregiving Spouses of those who have a form of Lewy Body Dementia.  What is shared there is just for the membership.  I will only comment in a general way what issues have been raised.

The group is a place where members can vent freely without fear of judgment.  We can whine, scream, cry; we can reveal what is going through our minds even if it is not very nice; we can complain; we can talk candidly about things that would gross others out; we can be matter of fact about matters that would frighten those who have not been in our shoes.

We all have a common enemy — the disease that is stealing from us our Loved Ones and at the same time the life we might have had were the disease to have passed by without stopping at our place.  The recent thread has ruffled feathers as members have disagreed on how to talk about what we do, the lives we have now that Lewy is part of the family.

Some talk about the unfairness of it and the pain and the waste of the life they wish they had and the ultimate defeat that comes at the hands of the disease.  Some write when they are depressed by their powerlessness, when they are grieving the loss of the person they love while that person’s body still needs care, while that person’s physical presence may be threatening, or simply vacant of recognition. Some feel like victims of things beyond their control.  Some cannot tolerate the thought of seeing the situation we are in as a privilege.

Some talk about the privilege of caring for their Loved Ones.  Some see the care being given as a choice made by the Caregiver.  They could have run out on their Loved Ones, but they have chosen to stay.  Some find satisfaction in what they are doing.  Some see their caregiving as their current job, providing them with meaning and purpose.  Some refuse to allow themselves to be victims.  Some make the best of the situation seeing positives that come out of it.

There is a continuum of feelings and perceptions that has the above attitudes at opposing ends.  For lots of complex reasons that have to do with people’s family of origin and life’s experience and world view, most of us gravitate to a certain place on that continuum as our home base.  With that said, at one time or another any of us can be at either end or anywhere between.

What is helpful is to have a place to go where there is permission to admit to being anywhere along that continuum — no apology needed, no justification, just understanding and acceptance.

I will admit that my home base lies in the place where there is acceptance of our lot being no better or worse than any other lot, just different.  I don’t feel victimized.  It feels very right to be enjoying a healthy relationship, fulfilling promises made.  I feel very privileged to be able to actually make a difference in the quality of life of someone else with actions, not just words and occasional gestures.  While I would not choose this disease for Mary Ann, I am grateful for the growth in our relationship, the strength of character it has brought to the surface in our Children and Grandchildren, the wonderful friendships of so many good people surrounding us with help and support, what it has taught me about real love, not the stuff in the movies, the depth of faith that has grown from knowledge to experience of the Presence of God and God’s unconditional love and acceptance moment by moment every day.  I wouldn’t trade my life for anyone else’s.

At the same time, I can scream in frustration and feel overwhelmed at any point on any day of the week.  When my Lewy Body Dementia Caregiving brothers and sisters vent I am with them.  When they suffer, I am with them.  When they celebrate victories, even little ones, I celebrate with them.  They reveal courage as courage really looks when lived in the throes of real life, not as portrayed in the movies.  It is courage that can be messy and ugly and smelly and scary and enduring and bold and beautiful.

Privileged or overwhelmed?  Yup.

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.

“Do you remember anything about last night’s bathroom ordeal?”  She answered, “I remember you saying there’s poop everywhere.”  I asked the question because Mary Ann so often has little or no memory of times that have included lots of fainting.  In fact, Mary Ann seems to remember very little of the difficult times.  What a blessing! I, however, do remember.

The night did not go well for the first few hours after the bathroom debacle.  Mary Ann was up every few minutes, sitting on the side of the bed, not sure why.  As a result, both of us were exhausted this morning.  Mary Ann was especially confused about most everything.  The fainting continued.  When she ended up in bed after breakfast, I decided to lie down also.

Both before and after our naps, the fainting was constant.  Every time she stood up, she fainted.  That meant that I needed to be within a few feet of her all the time.  It is interesting that even though she fainted every time she popped up, what would seem like a natural deterrent did not work.  Since she has no awareness of the fainting, it does not work its way into her consciousness when she feels the need to stand up.  Most of the times she stood up and started to try to get around the front of the chair, seemingly headed somewhere, she could not tell me why she stood up and where she was going.

As the day wore on, the fainting began to subside.  I suggested that we attend the Evening Service at church tonight.  While, as usual, there was no verbal response, a little while after I asked about church, she stood up.  When I asked where she was headed, she answered that she was going to get her shoes.  That was her way of answering my question about church.  It is hard to explain just how frustrating it is to have no verbal clues to help discover her thoughts or intentions.  I have to wait for some physical movement to determine what she has decided.  What is more frustrating is to ask, get one answer, and then seconds later discover by her movements that she is actually doing the opposite of what she said.  She said, “no,” she is not interested in doing whatever.  Then she immediately gets up to do what she just said “no” to.  It is just the nature of the misfiring that goes on due to the Parkinson’s Disease Dementia, but it is nonetheless frustrating.

We did go to church.  She did very well.  It was sort of odd to realize that those who saw us, had no idea what we had just gone through with the fainting and bathroom nightmare.  It would have served no purpose to do anything other than just say, we are doing okay.  One commented on this blog.  She may have been aware of what we had gone through last night.  It does help to know that there are some who track how we are doing.  Caring enough to read about our days is a precious gift to us.

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.

He looks at his reflection in a window panel at deck level and attacks, again and again and again.  It is a wonder he hasn’t knocked himself out.  Coincidentally, just last week the Kansas Birders discussed this problem in a thread titled “Crazy Cardinal.”  An explanation on the Audubon site said that Cardinals and Robins are almost the always the culprits when this happens.  There is so much testosterone flowing at this time of the year that they will even fight with themselves for territorial dominance.

When I watched this strange behavior going on, I couldn’t help but remember the quotation by Pogo, which ended up the title of a book,  Pogo: We Have Met the Enemy and He Is Us.

If I have read this correctly, there is a paragraph quoted in the forward to
The Pogo Papers, Copyright 1952-3, that comes from “Quimby’s Law (passed by the Town of Quimby after the Trouble with Harold Porch in 1897) on which the quote was based.  Whether or not I am correct, the paragraph includes an expansion of those words.

“There is no need to sally forth, for it remains true that those things which make us human are, curiously enough, always close at hand. Resolve then, that on this very ground, with small flags waving and tinny blast on tiny trumpets, we shall meet the enemy, and not only may he be ours, he may be us.”

Watching that Robin expending so much energy fighting against his own reflection struck a chord with me about some of the battles I fight, battles that I suspect other Caregivers fight.  I have little doubt that this painful truth lies in the experience of most of us, Caregivers or otherwise.

It seems to me that sometimes I expend more energy and experience more frustration dealing with my reactions to problems than the problems themselves.  The problems themselves are just facts of our circumstances.  I have no control over them.  They just are what they are.  They have no sentience.  They aren’t seeking to make me miserable.  They are just the harsh realities of living with any other human being, let alone one with Parkinson’s Disease and Parkinson’s Disease Dementia.  Some of those realities are just stuff that comes with daily living.

We have been impacted by Parkinson’s for over 23 years now.  That is just a fact of our lives.  Everyone has something to deal with, most often lots more than one something.  It is a waste of time to try to determine whose trouble is worse.  The issue is not who has more or who has less to deal with, the issue is, what will I do in the face of my problems.  I have a finite amount of time and stamina.  I can’t afford to waste a whole lot of it battling my own reflection.

Let me try to make sense of that.  When something happens, Mary Ann falls, I can pull the transfer chair over, pull her up, see if she hurt herself when she fell and then get on with whatever is next.  That takes some time and physical effort but nothing of major consequence.

Other alternatives for responding include the response just described plus wondering what possessed her to get up in the first place when she knows she is vulnerable to falling; is she just trying to make it difficult for me; why is she so stubborn, how many times do I have to do this; what if she hurts herself badly, that will mean hospital or rehab or nursing home; she will hate it there and so will I, will I have to spend my days at the nursing home doing all the things the staff doesn’t have time to do, should I have changed the dosage on a medication to help reduce the falls, is there something that I should have done to anticipate the fall and stop it from happening, if she would just stay in her chair, I could get something else done, Volunteers would be more willing to stay– the more she falls the less likely they are to keep coming to be with her.

I don’t go through all that every time she falls, but when anything happens, there can be all sorts of reactions that use up precious energy that would be better used just doing what needs to be done.  Too much time gets wasted fighting against imagined enemies that are created in my own mind.

Mary Ann slept well last night, and we both ended up sleeping late this morning — much needed.  Hospice Aide Sonya came and helped Mary Ann with the morning prep tasks.  There was some fainting later that resulted in a nap, but it was a fairly short nap.  We ate out at McFarland’s.  She allowed me to help her after a while.  We had some of Maureen’s spaghetti and Kroger’s brussel sprouts from the freezer.  Next came the promised trip to Baskin & Robbins.

Mary Ann is in bed now, but I am not sure yet how well she is sleeping.  There seems to be some restless movement.  Hopefully, we will both rest well enough to enjoy the beautiful day predicted for tomorrow.

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Even at our age and in a wheel chair, Mary Ann is pretty.  Looking at those pictures of Mary Ann from the time before we started dating and pictures of her in our dating years and early marriage, I was reminded just how pretty she has been all her life.  No wonder I fell in love with her.  I am not so shallow as to have only looked at the surface.  Her personality has always been intriguing, exciting, unpredictable, entertaining and complex.  There has never been any pretense about who she is.

One of the things that jumped out in the pictures from earlier years was her bright smile.  That is one of the things that Parkinson’s steals from those whose lives it impacts.  Facial expressiveness diminishes.  Those pictures were poignant reminders of just how expressive and beautiful that face has been.  They also confirm and reinforce the image that still comes through when I see her.  It is a good thing when people grow old together.  These old bodies still contain young people.  When we grow old together, we can see past the old bodies to the young people living inside.

Mary Ann revealed that she was excited to have the chance to reconnect with her family.  It meant so much to her.  She has felt very disconnected after losing her Dad two weeks after we were married and two brothers, both when they reached the age of 51.  Her Mother has also been gone for many years.

The old pictures and conversation gave our two children a chance to discover more fully the family with which they have had little contact.  Their Cousin Diana and her Daughter Rachel provided through their presence and their stories about family a window into the other half of the gene pool from which our Children have emerged.

Mary Ann soaked it all in and responded as she could.  The night before last had been a tough one with multiple times up.  She crashed during lunch.  She could not hold her head up any longer as I tried to help her eat.  Finally, she gave in and decided to lie down.  After a long nap, she was able to interact and enjoy Diana, Rachel and our Children as they talked about and asked questions about the past.

Last night, Mary Ann went to bed and was asleep as soon as her head hit the pillow.  This morning, she was in exactly the position she was in when she fell asleep last night.  She had not moved a muscle, nor had she gotten up during the night to use the commode.

Our Daughter, Lisa, along with Husband, Denis, and the girls, Abigail and Ashlyn left for home early this morning.  Diana and Rachel were able to spend the day with us.  It was a good day, a little less intense and more relaxing.  We just spent the day getting to know each other better.

I had thought about giving them a quick tour of the area.  Mary Ann reminded me of the Tulip Festival at some spectacularly beautiful gardens at the edge of a lake on the other side of town.  The flowers provided clusters of vibrant colors, one after another, some more formal and symmetrical, others very natural with an asymmetry that was pleasing to the eye.  The weather was perfect, sunny, cool and clear.  The lake was sparkling and serene at the same time,  The gardens are filled with ponds and streams and waterfalls.

We moved on to travel west into the Flint Hills.  It would have been a crime to come this far and not see those rolling hills, prairie as it was hundreds of years ago.  Some areas were green with fresh grass growing.  During April comes the burn.  All the random seeds brought in by wind and wildlife germinate during the growing season and threaten to overpower the natural prairie grasses. In past centuries, buffalo fed on the grass until there was nothing left above ground. Roots extending fifteen to eighteen feet would assure that the native grasses returned the next spring.

On account of the decimated buffalo population, burning the foreign growth returns the hills to their pristine past.  Through the ashes soon burst the Big Bluestem, Little Bluestem and Indian Grass.  There is nothing like the contrast of that bright green emerging through the black ash cover.

The tour of the Flint Hills was a treat for me, and seemed to be so for Diana and Rachel.  We found our way to a little town called Paxico.  There is no grocery or gas station there, at least that I have found.  The buildings contain lots of old things for sale, ranging from flea market fare to expensive antiques. It is not a contrived and artificial imitation of an old town just for tourist consumption.  It is the real deal.  There is an outlet there for the pottery made by the Potter who turned the dishes and bowl that Mary Ann uses.  We have other pieces, bowls and cups and pitchers.  The name is Jepson Pottery.  His studio is in Harveyville, Kansas.

Mary Ann was ready for ice cream when we left Paxico.  We had leftover Grasshopper and Mud pies from Baskin and Robbins for supper.  Mary Ann is in bed and, after a snack and some Tums, she seems to be sleeping.  Tomorrow is likely to be a recoup day.  Hopefully, she will have another restful night tonight.

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Then comes: Assign a home, Containerize, and Equalize.  You now have the secret formula for making SPACE in which to live without succumbing to the clutter.  Easier said than done!!!

As Mary Ann and I looked at the symbols of our life as individuals and together, the sorting and purging has had implications beyond the things themselves.  While Mary Ann has been better at letting go of things than have I, I have inferred from a couple of reactions that she struggles with so much of her life being out of her control.  She has to get me to do for her much of which she has always done for herself.  She has an independent streak a mile wide.  It has to frustrate her to no end to have to depend on someone else, someone who gets grumpy and complains far too often.

To have things thrust in front of her with the question, “keep or give away,” can’t have been very easy, especially with an impaired Executive Function (reasoning things out rationally) due to the Parkinson’s Disease Dementia.  We wore her out.  She went to bed early.  We made a point of keeping anything about which there was any hesitance on Mary Ann’s part. She retained the veto power.

As the memories of past times are triggered, there are questions that lurk behind them: Is that all there is?  Is it enough?  Are there more memories to be made?  Does letting go of the symbol diminish or dishonor the past experience symbolized by it?  What on earth is this and when and where did we get it?

Actually, we have only done the relatively easy items.  For me, there will be boxes of ministry related items and memorabilia that have to be dealt with.  What does a person do with forty years of sermons?  Why do I suspect there are a number of smart aleck comments wandering around the minds of readers?

I have mixed feelings about the sorting, purging and organizing that is going on.  The benefit seems to me to be gaining space in which to live, both physically and mentally.  The clutter occupies a lot of space in my world.  On the other side of it, there is a bit of fear that having that job done will remove a goal that helps define my purpose.  I need to clean the basement.  That is a job for retirement.  Once it is done, what will fill its spot in my sense of purpose, my intentions?

Anyway, the task goes on.  While we were in the garage working on that task, a couple of medium-sized, maybe Labrador mix, stray dogs wandered by to visit.  They had no collars.  They were friendly, and appeared to be well-fed and in good health.  They were great with the kids.  We called animal control, but they dogs had wandered away by the time the truck arrived.  After he left, they returned and spent an hour or hour and a half, hanging around, playing with a tennis ball the kids were throwing, lying on the deck as the family sat out there.  I phoned animal control again, but this time no one showed up.  Finally, they wandered off.  I hope they are caught and find a good home.

Well, again, I am too tired to write any more tonight.  It is time to get some sleep.  Hopefully both Mary Ann and I will sleep well.

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This morning, Mary Ann asked Daughter Lisa how things were going in her marriage.  It was just the opportunity needed for Lisa to tell her in a natural and gentle way the truth that all is well.  The general wisdom is to go along with delusions/hallucinations when interacting with someone suffering from dementia.  We are using the truth in love approach. 

Maybe Lewy Body Dementia [LBD] is different enough from other expressions of dementia to warrant an approach different from the general wisdom.  Parkinson’s Disease Dementia [PDD]  is a dementia with Lewy bodies, and presents itself in a way that is almost identical to LBD.  Those who suffer from LBD or PDD live in the margin of reality.  There are forays into a world with little, sometimes no relationship with reality.  Those with LBD/PDD can return to lucidity in a moment or a day or seldom. 

It seems that since there is movement between reality and hallucination/dream/delusional perceptions, surrounding the person with the truth can help the person move back to the reality side of the margin between the two.  Mary Ann may move back to the hallucination/dream/delusional view of reality, but having the truth surrounding her seems to help. 

Just a few moments ago, when she was moving in bed, I went in to see what I could do to help.  She asked if the party was over.   In her mind, a large group of people had come in the door at the same time for a party celebrating the new sun room and remodeled deck.  It was Good Friday.  I went with it enough to ask if they liked it.  She said they did.  I asked her to include a request for donations to pay for it the next time there was such a gathering.  She laughed.  I described the truth to her.   There was no party, Lisa, Denis and I had just watched the NCAA basketball tournament final — a great game!

She seemed to accept that description of reality.  It just seems to me to be better to speak the truth in love to hallucinations/dreams/delusions.  It makes sense to me that the more truth in those of us around Mary Ann, the more secure she will feel, even though the truth runs counter to what she is convinced she has seen or heard.  It would be too hard to try to keep track of anything other than the truth. 

Mary Ann slept well last night.  She has napped some during the day.  In general, she seems to do better with hanging on to reality when she is well rested. 

Her nap time gave us a chance to continue a task that started yesterday when Daughter Lisa and Son Micah were here together.  We began going through boxes.  What a frightening task — overwhelming.  There are so many boxes of things, so many decisions to be made about what to keep and what to give away and what to throw away.

Daughter Lisa is now a professional in the area of organizing.  She has always been the most organized person I know.  Now she gets paid to do it.  Gratefully, she is not pushy about it.  I had to open the door to this task.  We carted boxes from the basement storage area to the garage and began going through them.  We brought Mary Ann out into the garage to look at the contents of some of the boxes.  She said her childhood was there when she looking into a large box of dolls, mostly disintegrated after being stored for so many decades. 

There are some complex dynamics to what we are doing, given the time in our life and Mary Ann’s circumstances.  There is an element of sending our things on their way to our Children and Grandchildren, since we are late in life and Mary Ann is so vulnerable.  Since Mary Ann lives as if death is not a part of her reality and my health is still good, we are not ready to let go of things that have a sentimental attachment.  Actually, Mary Ann is not very sentimental, so it is easier for her to pitch things. 

It is a good thing that our space is very limited in this little townhome, so we are forced to let go of things we might try to keep if we had more room.  Somehow the combination of the need to move out a full cabinet due to the addition of the sun room, Mary Ann’s decline in these last few months, my retirement, and just the weight of what we have accumulated has pushed me over the edge of procrastination and into the throes of purging. 

At the moment, we are making some progress.  The task is huge.  I am hoping now that we have started, to keep momentum going even after Lisa and her family have headed back home.  It is much harder to get motivated on my own, and to make enough progress when Mary Ann is awake and in need of my help. 

Tomorrow we plan to continue the task.  I hope it is a productive day.

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