Help from Others


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.]

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.

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.

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This Face book business adds a whole new dimension to life.  I don’t think I have ever been wished a happy birthday by so many.

The morning began bright and early with cards from the Spiritual Formation Group members and a cherry and apple kuchen.  Before the group meeting was over, my Sister Gayle called and sang happy birthday to me.  There were more cards in the mail, in addition to a few yesterday.  We had no special plans, except, of course, some ice cream from Baskin and Robbins late this afternoon — but then every day is an ice cream day.

The last three days have been pretty active ones.  On Monday, after Bath Aide Zandra came, Mary Ann’s friend Jeanne came, brought lunch and then spent the afternoon.  Mary Ann had some time out outside in the beautiful weather.  During that time, I ran errands, including a trip to see Dr. Tim about manipulating my back to help with the consequences of Saturday night’s challenges with Mary Ann’s fainting.  Volunteer Patrice came to spend the evening with Mary Ann. I combined a few errands with some time sitting in what had been a favorite spot for quiet time.  The area has changed and it seemed to have become everyone’s favorite place to drive through.

On Tuesday, Mary Ann did well in Bible Study.  We picked up pizza slices for Mary Ann to eat for lunch, then went to see Doug and Marikay for haircuts.   It had been so long that he needed to use hedge trimmers to cut my hair!  We always enjoy the conversation with those two.  We share a love of the outdoors and wildlife.   Following the haircuts we went right to the grocery store.  I marvel at how much we buy just to feed the two of us.

Volunteer Shari came for the evening.  After a couple of little errands, I spent time again parked in the beautiful spot nearby.  For some reason there was very little traffic that evening.  It was a beautiful night and a wonderful experience.  A CD of choral music titled “Shakespeare in Song” by the Phoenix Bach Choir provided stimulating and exciting choral music, lifting my spirit.

This morning toward the end of our group time, Bath Aide Zandra came.  Mary Ann was still in bed and asleep when Zandra arrived.  Later in the morning, Hospice Nurse Emily came for her weekly visit.  Then Volunteer Cynthia came for two and a half hours, followed by Volunteer Rebecca who stayed another two and a half hours.

During Cynthia’s time with Mary Ann, she did the ironing!!! God is good!  So is Cynthia!  Also during that time Sheila, who does landscaping for folks in the area came by to do her every two week clean up.  She did some clean up on the waterfall to tide us over until Brad comes by for the official spring refreshing of the plantings.

During Rebecca’s time with Mary Ann, I got a major errand run, all the useful remnants of the clean up taken to Good Will.  Then came supper, followed by ice cream, followed by Mary Ann going to bed.   Doug and Marikay stopped by to deliver some salmon they had smoked for us and to see the new sun room.

Both of our Kids, Lisa and Micah made their Happy Birthday calls.  All in all, it has been a pretty good three days for both of us.  Last night when I sat down to write a post, I fell asleep at the computer.  I decided I needed to get to bed.

Now that I mention it, my head has been bobbing as I have been sitting here writing this. Thanks to all who sent cards or Face Book greetings.  It made the day a very special one.

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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.

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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.

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

This morning, 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.

I have very seldom seen Mary Ann cry.  This Easter morning as we sat together with Daughter Lisa and her family in the pew during the Easter worship service Mary Ann’s tears flowed. At first, I just thought her nose was running when she indicated that she wanted a Kleenex.  Her nose has been running for the better part of two decades.  It wasn’t until later in the service when handing her a Kleenex that I noticed tears on the inside of one of the lenses of her glasses.

She went through many Kleenexes as the service went on.  After church at one point when we were alone together, I asked what she was thinking about in the service.  She answered, “Nothing good.”  Then later when we were at home, I asked if she had been thinking about the chance that this might be her last Easter.  I thought maybe the music and language of the day in message and prayers and music and hymn texts had allowed the reality of her situation to finally sink in.

She said no.  She said she was thinking about Daughter Lisa.  She had managed to tap into the delusion/dream that Son-in-Law, Denis, was divorcing Lisa.  I explained again that what she was thinking must have come from a dream, since Lisa and Denis were solid and secure.  She seemed to accept my explanation.  Later in the day, she seemed to be drifting back into that delusion, but she caught herself and moved back into reality.

I talked with Lisa and Denis about it tonight.  Lisa will see if there is some way to ease into a conversation that might reassure her Mom of the strength of their marriage.

Our Son Micah and his family came early today so that he could fire up his smoker.  It took all day, but we had the best Brisket and Pulled Pork that I have ever had.  We have prided ourselves in liking only the best of the BBQ places.  We lived in Kansas City for fifteen years.  KC has some of the best BBQ in the country (in my humble opinion). This was better than anything we have had at any of the best BBQ places around.

It was a great day  The weather was outstanding, the family was together, we got to church, and we had a great meal.  I was too tired to write last night, and this is all I can handle tonight.  It is off to bed in hopes of a decent night’s sleep!

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It felt good to be with other people in worship at the Good Friday service at noon.  The events remembered this week are at the core of what my ministry was about those forty years.  The events remembered this week are what provide access to a relationship that shapes my world day by day.  The events remembered this week heal my sometimes wounded spirit, wounded more by my own thoughts and actions than those of anyone else.

I was bummed yesterday afternoon when dressed and ready to attend the Maundy Thursday service Mary Ann’s circumstances did not cooperate.  That worship service has always been one of the most powerful in the year.  The words and, more importantly, the actions of that liturgy reveal the healing of wounds and the consequences of that healing.  The traditional liturgy as I have done in my years in the ministry includes an action that provides a painful look into the mirror, followed by words that create the freedom to begin again and write a new story for our lives.  There is a time in the service when one action, the foot washing, demonstrates that new story as one of service to others.  There is a meal called Holy Communion or the Lord’s Supper.  There the joy of community with one another and our God is celebrated.  We become family in the best sense of that word.

It was hard not to be there and draw on the words and music and actions that speak so powerfully to my spirit.  I was grateful that circumstances here at the house allowed the possibility of a corporate worship experience today.  While we have been able to get out of the house for one thing or another, most of the time it has been in accord with Mary Ann’s readiness.  Other than her Tuesday morning group and most of the doctor appointments, we have not often been able to get to something with a specific scheduled time.  Admittedly, that has been one of the challenges for me, since I have tended to be a planner.  I no longer have a shred of control over what we do and when.  The Parkinson’s and Parkinson’s Disease Dementia are currently running Mary Ann’s and my schedule.

I was too tired to stay up and write a post for the blog last night.  The night before had been one of those nights filled with needs, up many times, and then up very early in the morning.  Mary Ann had a couple of long naps during the day.  There were some hallucinations/delusions beginning a bit.  After she had been in bed for a while last night, she asked if the Thursday people had gone yet.

Today was another fairly busy day.  The electricians came and put up the ceiling fan and outside light.  They did so during a pretty noisy thunderstorm.  Then Hospice Aide Sonya came to give Mary Ann her shower etc.  We managed a quick lunch for Mary Ann before the noon service.

Then in the mid-afternoon, Mary and Arlene came over to check out the project and visit for a while.  They were followed by Hospice Chaplain Ed.  Admittedly, Chaplain Ed does more to provide me with conversation, than to do any sort of pastoral counseling for Mary Ann or for me.  I enjoy the visits.  In that way, I guess the conversation is therapeutic.

Now that the ceiling fan is in and the waterfall is fully lighted, I am getting even more pleasure from it.  It is hard to describe how calming and refreshing the setting is becoming.  More samples arrived today, so Mary Ann is having more input into the color scheme.  She seems to be enjoying the project more and more now that it is almost fully complete.

Our Daughter, Lisa, and her family from Louisville, Kentucky, have arrived at our Son, Micah, and his family’s home in the Kansas City area.  They will come here tomorrow afternoon to stay for five or six days.  We will have a lively place for a while!

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First came Volunteer Maureen with a decorated basket fill with candy and dozens of home made cookies, along with some spaghetti for the freezer.  If that is not enough, after spending a couple of hours with Mary Ann, she left and returned with three containers of fresh strawberries with the greeting, Happy Easter.  We certainly are treated very well!!

Next came Edie, Paul and Shari for our Spiritual Formation Group.  For the first time in months, we were able to sit outside and enjoy the newly remodeled deck filled with the constant sound of water spilling over the rocks of the waterfall.  That and the birds accompanied the sound of the garbage truck and weed eaters.  What a rich environment for exploring mechanisms for allowing the awareness of the presence of God to wind through our days.  That two hours weekly has a profound grounding effect that helps sustain me during the unsettling times as well as filling with meaning the ordinary moments.

Shortly before the Group meeting ended, Bath Aide Zandra came to give Mary Ann her shower, wash her hair and get her dressed.  Apparently all went well.  We held off on morning pills until after Zandra was done.  That way we avoided the fainting spells that seem to be triggered when the meds first kick in.  There was some fainting later in the day, but it was very manageable.

When all those folks had left, a call came from Hospice Social Worker Kristin for her monthly visit.  She came over and, as usual, she asked lots of questions about how both of us were faring in our situation.  With all vagaries of Mary Ann’s cluster of medical problems, we seem to be healthy and secure — a credit to the support we get from so many folks.  During her visit, Volunteer Coordinator Mary phoned that she and Arlene would like to come by on Friday for a visit.  I could report that to Kristin as an example of the many folks who care for us and brighten our days.

Next came the Sister-in-Law of Jerry, our Remodel Contractor.  She is a gifted painter, who on very short notice was able to prep the ceiling for the electrician who, hopefully, will come soon to install the ceiling fan.  Actually, she was here while Hospice Social Worker Kristin was doing her task with us.

After Painter Diane left, Stacey came to talk with us about blinds and colors to paint the interior of the upstairs.  She brought wonderful ideas and helped us talk through some things.  Mary Ann was fully involved in the discussion, especially the discussion about colors of paint.  Mary Ann has an exceptional eye for colors.

After Stacey left, procrastinator that I am, we went out to eat using a promotional $25 gift certificate that I have had since before Christmas.  Today was the last day it could be used before expiring.  We ate a $34 and change worth of meals, that ended up only $4.61 (I realize the math doesn’t work, but the way the tax was applied also made a difference).  Yes, I gave a tip based on the charge before the discount.  The meal was at a good restaurant here called the Brick Oven.  Mary Ann allowed me to reach across and help her get the food to her mouth after she had struggled for a while.

After, of course, a stop at Baskin & Robbins, we got home to meet with Contractor Jerry who was there finishing up a couple of little things.  The main reason for the visit was to pick up the check for the work they did on the sun room and the deck.  There goes that inheritance, Kids!

Speaking of the Kids, Daughter Lisa called.  We got to talk with five year old Granddaughter, Ashlyn, who told us they were going to try to come a day early, which is only a couple of days from now.  They will arrive either late on Friday or early on Saturday if they stay with our Son and family in the Kansas City area before arriving at our house.  Needless to say that news lifted Mary Ann’s spirit as well as mine.

The day concluded with some deck sitting time after Mary Ann headed to bed.  Deck Therapy is one of the most effective tools for helping me keep perspective and fold into the day the support of the One who gives me breath.  I guess the day began and ended with the birds and the waterfall each providing their uniquely healing sounds.

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The birdfeeders are back up.  Will they return?  Other than the last time we had a snowfall (birds are fowl weather friends — sorry, bad pun), there have been few birds.  There has been too much activity with the construction.  Now that it is done and the bird feeders are back up, will the birds find their way back?

They will need time.  Birds can be very fickle.  If there is not food available when they want it, they will just find their way somewhere else that is better stocked.

Since the weather is so warm and the deck is finished, we are going to try having the Wednesday morning Spiritual Formation group outside.  We begin at 7:30am.  It is likely to be pretty chilly then, but it should warm up quickly.  There will, of course, be lots of hot coffee to warm our insides.

The workers completed most of the last tasks in the remodel job.  The cork floor is now laid in the sun room.  The screens are in, so we could keep the door open for most of the evening tonight.  The sound of the waterfall is loud and clear when the new sliding glass door is open. Everything looks better than I had even imagined. I spend as much time standing on the deck this evening as I could while still keeping an eye on Mary ann.

Mary Ann had a difficult first half of the night last night and slept in until about 11:30am.  During that time, CPA Twila came by with very good news on our taxes.  Retiring and not being able to work part time has the beneficial side effect of pretty much eliminating any tax liability.

Mary Ann ate breakfast at lunchtime.  She decided that she wanted scrambled eggs, bacon and toast.  I managed to get that accomplished, even adding some shredded cheese to melt on top of the eggs.  Volunteer Tamara had brought us a dozen farm eggs last evening, the ones with the deep yellow yolks.  They are wonderful.

After a hearty lunch, Hospice Nurse Emily stopped by.  Mary Ann’s blood pressure was high as usual, 172/108.  There was a little fainting.  in the morning. The daily task I thought had come to a conclusion continued today.  Mary Ann has been eating pretty well lately, and the intestinal activity reflects that.

Mary Ann wanted Chinese (Sesame Chicken) from the Chinese food counter at the grocery store.  After eating a healthy portion of the rice and the chicken (and Crab Rangoon), she ate about 60% of the two scoop treat from Baskin & Robbins that she had declined when I brought it home last night (too close to bed time).

She folded shortly after supper and headed to bed.  I need to get to bed also, since preparation for the morning group begins early.

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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